U.S. Department of Health and Human Services

   ~~~
 _______ __   .
 Health Resources and Services Administration
                 S>EPA
MOUNT SINAI
SCHOOL OF
MEDICINE
             Pro ce edings\ From
Region II
  ASTHMA  SUMMIT
          NEW JERSEY ₯ NEW YORK ₯ PUERTO RICO ₯ U.S. VIRGIN ISLANDS
              May 31 -June 1, 2000
      Funded in part by HRSA, EPA, and RWJ Foundation

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                         REGION n ASTHMA SUMMIT
    Sponsored by Health Resources and Services Administration, Environmental
         Protection Agency-Region II, and Mount Sinai School of Medicine
                                May 31 - June 1, 2000


                                TABLE OF CONTENTS
PREFACES
Claude Earl Fox, MD, MPH, Administrator, HRSA                                     p. 5
Jeanne Fox, JD, Regional Administrator, EPA-Region n                                  p. 6

FACULTY                                                                   p.  7

EXECUTIVE SUMMARY                                                      p. 11

WELCOME AND OPENING REMARKS
Ron Moss, MSW, CSW, Director, New York HRSA Field Office                          p. 16
Arthur H. Rubenstein, MBBCh, Dean and CEO, Mount Sinai School of Medicine              p. 16
Neal L. Cohen, MD, MPH, Commissioner., New York City Department of Health             p. 17
Alison E. Greene, JD, Regional Director, DHHS-Region n                               p. 18
Jeanne Fox, JD, Regional Administrator, EPA-Region n                                  p. 20

OVERVIEW OF HRSA'S ASTHMA STRATEGY: KEYNOTE ADDRESS
Claude Earl Fox, MD, MPH, Administrator, HRSA                                     p. 22

STATE HEALTH COMMISSIONERS PANEL
A Discussion of States9 Issues & Needs in their Asthma Plan Development
Moderator:  Alison E. Greene, JD, Regional Director, DHHS-Region n
Christine Grant, JD, MBS, Health Commissioner, New Jersey                             p. 28
Kenneth C.  Spitalny, MD, MPH, Assistant Commissioner, Health Initiatives, New York        p. 31
Mavis L. Matthew, MD, MPH, Assistant Commissioner of Health, U.S. Virgin Islands         p. 32
Carmen Feliciano de Medecio, MD, MPH, Secretary, Department of Health,
Commonwealth of Puerto Rico                                                     p. 36

EPIDEMIOLOGY AND SURVEILLANCE ON ASTHMA IN REGION II
Jeanne Moorman, MS, Centers for Disease Control and Prevention                         p. 44

HEALTH DISPARITIES PANEL
Asthma's Impact on Underserved and Minorities
Moderator:  Sam S. Shekar, MD, MPH, Associate Administrator, Bureau of Health
Professions, HRSA
Miriam Merced, Director, Community Health Promotion Program, Robert Wood Johnson       p. 47
University Hospital

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 Jean G. Ford, MD, Director, Harlem Lung Center, Harlem Hospital Center                   p. 50
 Dale S. Garee, Parent & Program Manager, Comprehensive School Program,
 Department of Education, U.S. Virgin Islands                                            p. 52
 Mahmood I. Siddique, DO, Director of Asthma Program, Eric B. Chandler Clinic               p. 54

 CONFERENCE OBJECTIVES AND CHARGE
 Margaret Teng Lee, MD, Director, Office of Data & Analysis, Northeast Cluster              p. 58

 WORKSHOP A: PUBLIC & COMMUNITY OUTREACH & EDUCATION
 Moderator. Roberta Holder-Mosley, CNM, Regional Clinical Coordinator, New York
 HRSA Field Office
•Kevin Thomas McNally, MBA, Program Manager, Child & Adolescent Health Program,
 New Jersey Department of Health & Senior Services                                     p. 61
 Philip J. Landrigan, MD, MSc, DIH, Director, Division of Environmental and Occupational
 Medicine, Mount Sinai School of Medicine,  East Harlem Community Health Committee          p. 62

 WORKSHOP B: CLOSING THE GAP BETWEEN SCIENCE & PRACTICE
 Moderator: James Patrick Kiley, PhD, Director, Division of Lung Diseases, NHLBI, NIH
 Leonard Bielory, MD, Director, Division of Allergy & Immunology, UMDNJ                  p. 63
 Carlos Camargo, MD, DrPH, Director, MARC Coordinating Center, Department of
 Emergency Medicine, Massachusetts General Hospital                                    p. 65
 Jonathan N. Tobin, PhD, President & CEO, Clinical Directors Network, and
 Shawanda M. Patterson, MHA, Clinical Research Manager, Clinical Directors
 Network-Region 2                                                                   p. 65

 WORKSHOP C: ENVIRONMENTAL INTERVENTIONS/PARTNERSHIPS
 Moderator: Rachel Chaput, MPH, Asthma Project Coordinator, EPA-Region II
 Louise Cohen, MPH, Director, NYC Childhood Asthma Initiative                            p. 69
 George Friedman Jiminez, MD, Director, Occupational & Environmental Medical Clinic          p. 71
 David L. Rosenstreich, MD, Director, Division of Allergy and Immunology, Principal
 Investigator, NHLBI Inner City Asthma Study, Albert Einstein College of Medicine   _        p. 72

 WORKSHOP D: COALITION/NETWORK BUILDING
 Moderator: Richard J. Bonforte, MD, FAAP, VP & Clinical Director, Jersey City
 Medical Center
 Andrew Goodman, MD, MPH, Associate Commissioner, Community Health Works,
New York City Department of Health                                                   p. 75
 William Clark, PhD, RRT, New Jersey Pediatric Asthma Coalition, UMDNJ/SHRP
Respiratory Care Program                                                            p. 76
 Sara Thier, MPH, Program Associate, Asthma Initiative, Robert Wood Johnson Foundation       p. 78
 George D. Falus, PhD, The HispanoAmerican Consortium on Asthma, HispanoAmerican
Biomedical Association                                                               p. 80

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WORKSHOP E: MANAGED CARE ASTHMA INITIATIVES
Moderators: Nilsa Gutierrez, MD, MPH, HCFA-Region II, and Susan Conrath, MPH, EPA
Foster Gesten, MD, MPH, Medical Director, Office of Managed Care, New York State
Department of Health                                                               p. 84
Michael Cropp, MD, Medical Director, IHA-Buffalo                                     p. 85
Jose Rodriguez Santana, MD, Program Pediatric Pulmonar Centro Cardiovascular,
University of Puerto Rico                                                            p. 87
Leslie Lotano-Saba, RPh, MS, Director, Pharmacy Services, Asthma Disease Management
Program, Horizon-Mercy                                                            p. 88

DAY TWO, WELCOME AND OPENING REMARKS
Gilberto Cardona, MD, MPH, Regional Health Administrator, Region n                      p. 93

PUBLIC HEALTH PROGRAMS PANEL
Moderator: Monica Sweeney, MD, MPH, Medical Director, Bedford Stuyvesant
Family Health Center
Patrick L. Kinney, ScD, Associate Professor, School of Public Health, Columbia University     p. 94
Meyer Kattan, MD, FRCP, Professor of Pediatrics, Mount Sinai School of Medicine           p. 96
David Evans, PhD, Associate Professor, College of Physicians and Surgeons,
Columbia University                                                                p. 101

STATE REPORTS ON DRAFT STATE ASTHMA ACTION PLANS
Moderator: Elisabeth Luder, MD, Associate Professor, Mount Sinai School of Medicine
New Jersey: Kevin Thomas McNally, MBA                                            p.105
New York: Judith LeComb and Chris Kus, MD, MPH                                   p.107
Puerto Rico: Naydamar Perez de Otero, MD, MPH                                     p.109
U.S.Virgin Islands: Audria Thomas, MD, Mavis Matthew, MD, MPH                       p.l 10

CREDITS                                                                        p-112
                            We would like to acknowledge support from the
                                  Robert Wood Johnson Foundation.

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PREFACE
Asthma has reached epidemic proportions in the United States — creating a health care crisis that costs the
nation more than $11 billion each year, over two times the annual HRSA budget. Women are more affected than
men. African-Americans are more affected than whites. Over the past 15 years, the number of Americans with
asthma has doubled to 15 million people. Today, 5 million children and young adults under age 18 surfer from
what has become the most common chronic childhood disease in this country.

Minority children and children from low-income families are especially vulnerable. The rate of asthma deaths
among African American children is four times higher than white children. And hospitalization and death rates
for Hispanic children in New York City here in Region n are three times higher than the national average. These
statistics paint a disturbing picture. How dp you effectively mount an effective public health campaign against a
disease whose causes are multi-factorial, resulting from the complex interplay between environmental exposures,
genetics, and other host factors as well as the barriers to accessing quality and comprehensive health care
services? The answer has to be better research and surveillance and more effective patient management and
education strategies. We may not have a cure for asthma right now, but there is a wealth of good information on
how to treat it. The task is getting this mformation to the people and communities where the need is greatest.

A key role of the Health Resources and Services Administration (HRSA) in the Secretary's DHHS Plan to
Combat Asthma is assuring access to health care. NIH focus is about research, CDC focus is about prevention,
and HRSA focus is access.                                                   ;

The Proceedings from the Region n Asthma Summit, which we are pleased to share with you, indicate specific
action steps from the participants as well as recommendations from the State Health Officers from New Jersey,
New York, Puerto Rico, and U.S. Virgin Islands. The action steps are designed to enhance federal and state
partnerships, implement effective long-term action plans, and to combat the complex problem of asthma. The
state-specific plans served as basis for ongoing technical assistance by the EPA, HCFA and other federal
agencies, which will be coordinated by the HRSA New York Field Office.

HRSA would like to acknowledge Mount Sinai School of Medicine and Environmental Protection Agency (EPA) as
co-sponsors for their crucial role and contribution in putting together this Region n Asthma Summit This is an
example of collaboration between HRSA and EPA and suggests that we need to be doing more together. We also
want to thank Robert Wood Johnson Foundation for their support. The HRSA staffs of Region JJ should be
commended for stepping forward to put on this meeting to address the issue of asthma. Finally, we would like to
acknowledge Ron Moss and Margaret Teng Lee for their hard work and commitment to this activity.

Claude Earl Fox, MD, MPH
Administrator, HRSA                                                        ;

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PREFACE
Dear Asthma Conference Participant:

We hope you find these proceedings useful in your work. We are proud to have been a co-sponsor of the Region 2
Asthma Summit held in New York City on May 31 and June 1,2000. Addressing the asthma epidemic in concert
with our sister agencies and other partners has been a priority of this administration.

In  recognition of the growing  body of scientific information demonstrating that  America's children suffer
disproportionately from environmental health and safety risks, President Clinton issued Executive Order 13045 on
, April 21,1997, directing each Federal Agency to make it a high priority to identify, assess, and address those risks. In
issuing this order, the President also created the Task Force on Environmental Health Risks and Safety Risks to
Children, co-chaired by Donna Shalala, Secretary of the Department of Health and Human Services (DHHS), and
Carol M. Browner, Administrator of the Environmental Protection Agency (EPA). The Task Force was charged
with recommending strategies for protecting children's environmental health and safety. A priority issue was asthma.

In April 1998, the Task Force identified four priority areas for immediate attention: childhood asthma, unintentional
injuries, developmental disorders, and childhood cancer. The Task Force created and charged the Asthma Priority
Area Workgroup, co-chaired by EPA and DHHS, with reviewing current Federal efforts to address the many facets
of the issue and, most importantly, to make appropriate recommendations for action by the Federal government This
asthma summit is a direct result of that work.

We recognize that only by working together can we attack and reduce the asthma epidemic facing our communities.
I want to personally thank each and every one of you for your participation and concern. We are proud to be your
partners in the endeavor to protect our largest asset, our Region's children.

Sincerely,

Jeanne Fox
Regional Administrator, EPA-Region n

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                    FACULTY LIST FOR REGION H ASTHMA SUMMIT
 Leonard Bieloiy, MD
 UMDNJ
 90 Bergens Street, DOC 4700
 Newark, NJ 07103
 973/972-2762

 Richard J. Bonforte, MD, FAAP
 VP & Clinical Director
 The Children's Medical Center of Hudson County
 Jersey City Medical Center
 50 Baldwin Avenue
 Jersey City, NJ 07304
 201/915-2456; FAX: 201/915-2459

 Carlos Camargo, MD, DrPH
 Director, MARC Coordinating Center
 Department of Emergency Medicine
 General Hospital, Clinics Bldg.397
 55 Fruit Street
 Boston, MA 02114
 617/726-5276; FAX: 617/724-4050

 Gil Cardona MD, MPH
 Regional Health Administrator, PHS-Region n
 26 Federal Plaza
 New York, NY 10278
 212/264-2566

 Rachel Chaput, MPH
 Asthma Project Coordinator
 EPA-Region H
 290 Broadway, 26A Floor
New York, NY 10007-1866
 212/637-4001

William Clark, PhD, RRT
 Chairman, New Jersey Pediatric Asthma Coalition
UMDNJ/ SHRP Respiratory Care Program
 65 Bergen Street
Newark, NJ 07107
 973/972-5503

Louise Cohen, MPH
Director, New York City Childhood Asthma Initiative
NYC Department of Health
 125 Worth Street, Rm. 619
New York, NY 10013
212/788-4703; FAX: 212/442-9539
Susan Conrath, MPH
Epidemiologist, US Environmental Protection Agency
1200 Pennsylvania Avenue, N.W.
Mail code 6609J, Washington, D.C. 20460
202/564-9389                   ;

David Evans, PhD
Associate Professor,              ;
Columbia University School of Public Health
60 Haven Avenue Rm.B-1
New York, NY 10032             ',
212/305-4012                   i
FAX: 212/305-2692              ;

George D. Falus, PhD
Executive Vice-President          ;
Hispano American Biomedical Association Inc. Massachusetts
130 W 42nd Street, Suite 608
New York, NY 10036             ;
212/997-9624
FAX: 212/997-9615

Carmen Feliciano De Melecio, MD, MPH
Secretary of Health, Commonwealth of Puerto Rico
Department of Health, Call Box 70184
San Juan, Puerto Rico 00936-8184
787/274-7602                   ;

Jean Ford, MD
Director, Harlem Lung Center
Harlem Hospital Center
506 Lenox Avenue Martin Luther King Bldg, Rm 12-106
New York, NY 10037
212/939-1459; FAX: 212/939-1456  :

Jeanne Fox                      ;
Regional Director
Environmental Protection Agency-Region II
290 Broadway, 26th Floor
New York, NY 10007-1866
212/637-5025                   :

Claude Earl Fox, MD, MPH
Administrator, HRSA
Park lawn Building, Rm 14-05
5600 Fishers Lane
Rockville, Maryland 20857
301/443-2216

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Dr. Neal L. Cohen
Commissioner
New York City Department of Health
125 Worth Street, Room 331
New York, NY 10013
212/788-5261

DaleGaree
Program Manager, Comprehensive School Health Program
Department of Education
44-46 Kongens Gade
St. Thomas, US Virgin Islands 00802
340/774-0100x3048
FAX: 340/774-8168
George Friedman Jiminez, MD
Director, Bellevue Occupational &
Environmental Medical Clinic
Bellevue-NYU Medical Center, Rm.CD349
462 First Avenue
New York, NY 10016

Meyer Kattan, MD, FRCP
Professor of Pediatrics
Mount Sinai School of Medicine
One Gustave Levy Place
New York, NY 10029
212/241-7788
FAX: 212/876-3255
Foster Gesten, MD
Medical Director, Office of Managed Care
New York State Department of Health
Corning Tower, Rm.2001
Albany, NY 12237-0094
518/486-6865
Andrew Goodman, MD, MPH
Associate Commissioner
Community Health Works
New York City Department of Health
125 Worth Street, Box 34C
New York, NY 10013
212/341-9815; FAX: 212/788-4920

Christine Grant, JD, MBA
Commissioner, State of New Jersey
Department of Health and Senior Services
PO Box 354
Trenton, NJ 08625-0364
609/292-7834
Alison Greene, JD
Regional Director
DHHS-Region II
26 Federal Plaza, Room 3835
New York, NY 10278
212/264-2560
Jim Kieley, PhD
Director, Division of Lung Diseases
National Heart, Lung and Blood Institute
National Institute of Health
Rockledge H, Suite 10018
6701 Rockledge Drive; Bethesda, MD 20892
301/435-0233

Pat Kinney, ScD
Associate Professor
School of Public Health, Columbia University
60 Haven Avenue, Rm.B-1
New York, NY 10032
212/305-4012
FAX: 212/305-4012

Phil Landrigan, MD
Chairman, Department of Community &
Preventive Medicine
Mount Sinai School of Medicine
One Gustave Levy Place, Box 1043
New York, NY 10029
212/241-7835

Leslie Lotano-Saba, RPh, MS
Director, Pharmacy Services
Asthma disease Management Program
Horizon Mercy Health Plan
275 Philips Blvd.
Trenton, New Jersey 08618
609/393-4300; FAX: 609/538-0847

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Dr. Kilsa Gutierrez
Medical Director
HCFA-Regionn
26 Federal Plaza, Rm.3835
New York, NY 10278
212/264-3772
FAX: 212/264-2580

Linda Holmes
Executive Director, Office Of Minority Health
New Jersey Department of Health and Senior Services
PO Box 360; Trenton, NJ 08625-0360
609/292-6962; FAX: 609/292-8713
Miriam Merced
Director, Community Health Promotion Program,
Robert Wood Johnson University Hospital
One Penn Plaza
New Brunswick, NJ 08901       ;
732/247-2050
FAX: 732/247-9198             '.

Jeanne Moorman, MS
Epidemiologist, Air Pollution & Respiratory Health Branch
Centers for Disease Control and Prevention
National Center for Environmental Health
1600 Clifton Road, Mailstop E17
Atlanta, GA 30333
404/639-2546
Roberta Holder-Mosley, CNM
Regional Clinical Coordinator
New York HRSA Field Office
26 Federal Plaza, Rm.3337
New York, NY 10278
212/264-2708

Ron Moss, MSW, CSW
Director, New York HRSA Field Office
26 Federal Plaza, Rm.3337
New York, NY 10278
212/264-2664
Maureen O'Neill
Senior Regional Urban Coordinator
EPA-Regionll
290 Broadway, 26th Floor
New York, NY 10007-1866
212/637-5025
FAX: 212/637-4943

Shawanda Patterson, MHA
Clinical Research Manager
Clinical Directors Network
54 West 39th Street, 11* Floor
New York, NY 10018
212/382-0699x38
FAX: 212/382-0669
Sam Shekar, MD, MPH
Associate Administrator, Bureau of Health Professions
Health Resource and Services Administration
5600 Fishers Lane
Rockville,MD 20857
301/443-5794

Mahmood Siddique, MD         •
Assistant Professor of Medicine UMDNJ
Division of Pulmonary & Critical Care
Director of Asthma Program, Eric B Chandler Clinic
1 RWJ Place Rm. MEB568
New Brunswick, NJ 08903
732/235-7840; FAX: 732/235-7048 '

Kenneth Spitalny, MD, MPH
Director, Center for Community Health
New York State Department of Health
Corning Tower, Rm.695
Empire  State Plaza
Albany, New York 12237-0001
518/474-5073

M. Monica Sweeney, MD, MPH
•Medical Director
Bedford Stuyvesant Family Health Center
1413 Fulton Street
Brooklyn, NY 11216-0000
718/636-4500x109
FAX: 718/636-2998

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Marcia Pinkett-Heller, MPH
Chaiiperson of Health Science Department
New Jersey City University
2039 Kennedy Blvd
Jersey City, NJ 07305-1597
201/200-3431

David Rosenstreich M.D.
Director, Division of Allergy & Immunology
Albeit Einstein College of Medicine
Montefiore Medical Center
1300 Morris Park Avenue
Bronx, NY 10461
718/430-2120

Arthur H. Rubenstein, MBBCh
Dean & CEO, Mount Sinai School of Medicine
One Gustave L. Levy Place, Box 1475
New York, NY 10019-6574
212/659-9003

Jose Rodriguez Santana, MD
Program Pediatric Pulmonar Centre Cardiovascular
Recinto Cs.Medicas, GPO Box. 3666528
San Juan, Puerto Rico 00936-06528
787/644-8080
Margaret Teng Lee, MD
Director, Office of Data and Analysis
HRSA Northeast Cluster
26 Federal Plaza, Rm 3337
New York, NY 10278
212/264-2531

Sara L.Thier, MPH
Program Associate, Asthma Initiative
Robert Wood Johnson Foundation
PO Box 2316
Princeton, NJ 08543-2316
609/720-7535
Jonathan Tobin, PhD
President & CEO, Clinical Directors Network
54 West 39th Street, 11th Floor
New York, NY 10018
212/382-0699
FAX: 212/382-0669
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                                  REGION n ASTHMA SUMMIT
                                     HRSA/EPA/Mount Sinai
                                       May 31- June 1, 2000
Executive Summary
lie Region n Asthma Summit was declared a success by partic ipants and sponsors alike, with more than 400 people
in attendance. Federal, state, and local government agencies participated in the conference, as well as foundations,
managed care organizations, hospitals, and non-profit organizations.  The U.S. Health Resources and Services
Administration was the main sponsor. The other co-sponsors were the U.S. Environmental Protection Agency and
the ML Sinai School of Medicine. The Robert Wood Johnson Foundation also provided generous support. This two-
day conference held May 31 and June 1,2000 in New York City had as its objectives: i

            <» To address the high prevalence of asthma morbidity and mortality in states and jurisdictions of
              Region n                                                     ;

            «J* To support state and local community health initiatives to  effectively address the disproportionate
              burden of asthma for minority populations

            »J» To support the development of state and regional asthma consortia

            »> To update current knowledge on best practice models for asthma outreach, education, and
              clinical and environmental intervention programs

            *!» To provide information on state managed care and local HMO initiatives on asthma in Region n

The conference sponsors and the members of the planning committee recognized that to develop and implement
effective long-term action plans to combat the complex problem of asthma, many key stakeholders from the public
and private sectors, recognized asthma experts, community-based organizations, environmental justice agents, health-
insurance companies, and foundations needed to be at the table. Dr. Claude Earl Fox, Administrator of HRSA, was
the keynote speaker and shared with attendees the recently announced "National and HRSA's Asthma Strategy."
A panel of the State Health Commissioners  from New Jersey, New York, Puerto Rico, and U.S.  Virgin Islands
presented the scope of the problem in their jurisdictions, identified their current activities to combat asthma, described
their asthma plans, and made recommendations for enhancing federal and state partnerships.

A plenary panel discussion by community providers and parents focused on the impact of asthma on minority and
urban communities and on the need to develop policy and programs that are culturally competent and that involve the
community and the family. Since the summit was organized around panel discussions and series of workshops, there
were many opportunities for the participants to network and to share their  activities and ideas. The  series of "best
practices" workshops focused on public and community outreach and education programs that address asthma; the
programs that close the gap between science and practice at the community level; the role of environmental
interventions and partnerships; coatition/network building; and  managed care asthma  initiatives. During the
workshops, participants were asked to develop recommendations that could be used by the conference sponsors as
part of their asthma strategy and for sharing with national policymakers.
                                              11

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In order to support and broaden the federal-state partnership with Region II states and jurisdictions in our joint efforts
against asthma, state-specific workshops were organized for the second day of the summit. Workshop participants
included the invited state team members, which included at a minimum: representatives from the Maternal and Child
Health Program, Children with Special Health Needs Program (CSHCN), State Medicaid Agency, State SCHIP
Program, State's Chronic Disease Program, and Environmental Healthy Agency; a parent representative; and the
state CDC asthma coordinator. The state teams also included representatives from their local Asthma Coalition, the
local chapter of the American Lung Association, and other key stakeholders as well. The state teams were asked to
get together prior to the summit to compile listings of current and planned state data and educational asthma targeted
activities and programs, which they would share with the otherworkshop participants during the summit  Additional
groundwork was laid when the state teams developed their Maternal and Child Health Block Grant Performance
Measure for 1999, which had targeted the reduction of the number of children who are hospitalized for asthma as one
of its measures.

During the  state-specific workshop, each state asthma team leader was asked to present the draft state asthma
action plan and to solicit input, suggestions, and recommendations. Federal resource persons from HRSA, EPA,
HCFA, and other federal agencies also attended. .Next steps were discussed in detail, including a follow-up plan for
the states and jurisdictions of Region E to receive technical assistance from EPA, HRSA, and other federal agencies,
which will be coordinated by the HRSA NY Field Office.
A summary of each State Breakout Session is included below. Some excellent ideas were fostered and efforts
have already been made to achieve improved Asthma Action Plans.  The five major areas of the
recommendations are: Education; Data Collection; Environmental Interventions; Health Care; and
Communication.

U.S. Virgin Islands Breakout Session
Recommendations and Action Steps

•  Recommendation I: Data Collection: During the next 6-18 months, expand the clinical data collection system
    to include community health clinics, health department clinics, and hospitals. This will give the Virgin Islands a
    more comprehensive picture of asthma medical management. Work with private providers to get information on
    their asthma population and utilize  collaborations with the WIC and Immunization programs. Name  a
    programmer to work on adding the questions to the systems.  Geo-coding would be a part of this effort.

 •  Recommendation II: Health Care: Improve compliance  with preventative medical management by first
    targeting the emergency rooms at the two hospitals and then moving to the clinical practice areas.

 •   Recommendation HI: Education: Discuss prevention  activities with the schools, via school nurses, physical
     education teachers, and coaches.  Start an American Lung Association chapter hi St. Croix, since mere is an
     existing one in St. Thomas, and begin peer education programs utilizing existing curriculum.

 •   Recommendation IV: Environmental Intervention:  Monitor and improve airquality in government buildings
     and schools.

 •   Recommendation V: Communication: Publish a journal article in order to improve knowledge and increase
     discussion.
                                               12

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•   Recommendation VI: Technical Assistance: Ask for technical assistance from CDC, HRSA, and AAP as
    the Virgin Islands team moves forward.

Puerto Rico Breakout Session        ;
Recommendations and Action Steps

•   Recommendation I: Communication: The Puerto Rico Asthma Coalition presented a draft of the work plan
    developed prior to the conference which basically addressed the needs of children. The Coalition incorporated
    the recommendation that the plan be modified to include the needs of the adult populatioa

•   Recommendation II: Education: Incorporate a CME requirement on asthma diagnosis and management for
    all health care providers requesting a license to practice in Puerto Rico. Have the Secretary of Health issue an
    executive order regarding this issue.

•   Recommendation III:  Environmental Intervention: Include the management of the environmental triggers
    on asthma in the educational topics to patients and providers.

•   Recommendation IV:  Education: Expand the local asthma initiative called The Colors of Asthma, currently
    focused mainly on children living in the service area of the University Pediatric Hospital, to other areas of the
    island. The federally funded community and migrant health centers might easily adopt the program if the Asthma
    Coalition provides training to the health educators and nurses.

•   Recommendation V: Education: Share the materials used in the local program with other communities with a
    large concentration of Hispanics. Will need approval from the pharmaceutical  company that sponsored the
    development of the materials.

•   Recommendation VI: Education: Develop educational material that is culturally sensitive to the Hispanic and
    Puerto Rican communities. Include resources in Spanish at any Asthma Clearinghouse or Resource Center to be
    developed and sponsored by the federal government

•   Recommendation VII: Data:  Develop a profile of the asthmatic population on the island. Identify accurate
    data to accomplish mis task.

•   Recommendation VHI: Communication: Educate the various federal agencie s serving the jurisdiction on the
    situation on the island.               ,                                      <
   Recommendation IX: Communication/Education: Obtain federal support for the Puerto Rico Department of
   Health-sponsored Island-wide Asthma Summit in October 2000.
                                     1

   Recommendation X: Communication: Prepare a regular publication about the general situation in the territory
   so that the federal agencies might better understand the island and respond adequately to the needs of the
   population.
New York Breakout Session
Recommendations and Action Steps
                                              13

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•   Recommendation I: Communication: New York State Department of Health to develop a Strategic Plan.
    State representatives to try to include concrete action steps that reflect the multifactor nature of the epidemic as
    described throughout the summit. The plan will give direction to the goal set by Governor Pataki to reduce
    asthma-related emergency room visits by 50% in New York State over the next five years through better
    education and adherence to effective asthma prevention and treatment therapies.

•   Recomme ndation II: Communication: Systematize the vast resources already targeted to asthma in New
    York State so that they  are fully and more  efficiently used. Some resources are hardly known; others are
    underutilized. Participants began exchanging  business cards as they became aware of the extensive resources
    represented by the people in this session.  They clearly  intended not to wait for a system to be developed,
    although the need was still recognized as a priority.

•   Recommendation III: Environmental Interventio ns: Environmental issues are too large to be handled in a
    clinical setting. Form a coalition to deal with such problems as truck routes and open incinerators, particularly in
    poor neighborhoods.  Broaden the seven existing regional coalitions in New York State to include organizations
    such as the Legal Aid Society, which are able to deal with these kinds of issues.

•   Recommendation IV: Education: Get information into the encounter room where physicians are actually
    treating asthma patients to improve then-practice - e.g. laminated pocket treatment cards, checklists, wall charts.
    These techniques should be accompanied by wider distribution of the NIH guidelines and skill training (not just
    CME).

New Jersey Breakout Session
Recommendations and Action Steps

•   Recommendation I: Health Care: Develop asthma standards (i.e., require written action plan, standard risk
    assessment form). Include adults as well as children; action items should be targeted to all populations.

•   Recommendation II: Health Care: Develop programs of home visiting by nurses and environmental
    assessors. Incorporate housing issues — HUD and DCA.

•   Recommendation HI: Communication: Establish regional coalitions in each area of the state by connecting
    with the existing MCH Consortia. Involve a wide range of organizations and industries  including  the
    pharmaceutical industry, faith-based organizations, grassroots organizations, landlords and tenants groups, etc.
    These regional coalitions should be linked to  a statewide coalition as well.

•   Recommendation IV: Communication: Send information about SCHS Registry, case management, and
    medication assistance to all primary care providers.  Make the Statewide Resource Directory available both in
    print and on the  Internet.

•   Recommendation V: Data: Expand data collection activities; participants repeatedly  discussed the use of a
    state asthma registry. Map health data on asthma with data on environmental and demographic risk factors.

•   Recommendation VI: Education: Tram nurses to be asthma educators (follow diabetes educator model).
    Train community health promoters in more communities.
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•   Recommendation VII: Education: Screen for asthma in schools and promote asthma education in schools,
    esp. Open Airways.  Suggest that NIH develop educational materials with lower reading levels, in languages
    other than English.

•   Recommendation VIII: Education: Include childcare and Head Start centers in programs; especially focus on
    early childhood education initiatives in Abbott Districts; encourage links between Head Start and Abbott District
    programs.                                                                .

•   Recommendation IX: Health Care/Financing: Require managed care to register children and to have a
    procedure code for asthma teaching. Insurers to require providers to have a written asthma plan — tie to
    payment HFCA needs to expand the definition of allowable "treatment" for asthma to incorporate environmental
    treatments, such as pillow/mattress covers and insect control. Cover home assessments for asthma triggers
    (precedent: Medicaid coverage of home inspections for lead hazards and limited abatement). Provide services to
    legal/undocumented immigrant populations for a better understanding of public charge rules.

Conclusion                                                                  ;
Conference participants represented a wide diversity of backgrounds and disciplines.   The two days  at the
conference gave them the opportunity to work together, exchange ideas, and learn from the information presented.
Many participants appreciated the best practice workshops, which offered ideas that they can implement at their
program or community level immediately. Participants also valued the chance to interact with local, state, and federal
representatives and to provide input into the state draft asthma action plans. Many of the parent representatives were
able to meet together for the first time and were invited by the state MCH and CSHCN staffs to continue their
involvement with the other parent organizations such as Family Voices. Several organizations working on health
issues among the Hispanic population in the United States and Puerto Rico were able to identify follow-up activities,
including a joint workshop with Ponce School of Medicine, the Hispano-American Biomedical Association Inc., and
federal agencies to discuss issues and policy on Health Care Delivery to Asthmatic Patients.  The conference
sponsors have committed to hold the 2" Annual Asthma Summit in a year's time. The goal will be to evaluate the
work that was accomplished over the course of a year and determine what efforts need to be increased and/or
improved upon. Since the summit, the New York HRSA state team members, the EPA-Region 2 Asthma
Coordinator, and Mt Sinai Pediatric Pulmonary Center faculty have received all the technical assistance plans from
Region IE states and jurisdictions and are working with them on the implementation of these activities.
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WELCOME AND OPENING REMARKS

RON Moss, MSW, CSW
Director, New York HRSA Field Office

       Mr. Ron Moss served as the moderator for Day One of the Region II Asthma Summit.

       Good morning and welcome to the Region n Asthma Summit I'm Ron Moss from HRSA, that's the Health
Resources and Services Administration, an agency within the Department of Health and Human Services. Please
remember the name HRSA, because we want you to know more about who we are and what we do. We are proud
to be one of the co-sponsors of today's summit. We come together this morning to discuss a topic that is extremely
critical as relates to the public health status of this region and of the country. The summit represents an impressive
collaborative effort of organizations including local, state, federal, foundations, rne private sector, and community, all
with the single purpose of addressing the problem of asthma and its effect on many of our citizens. We think this is
going to be an extremely beneficial meeting and we hope that through our collective efforts, actions will be taken mat
will result in the improved lives and health status of many residents in Region n and beyond.

       We are meeting here today in the beautiful facilities of the Mount Sinai Medic al Center. Mount Sinai is one
of the co-sponsors of today's summit. We are happy to have been able to work with staff from Mount Sinai in
planning today's activities. We are also proud to have with us this morning the President and CEO of this great
institution, Dr. Arthur H. Rubenstein. Dr. Rubenstein has led Mount Sinai's collaborative effort to combat asthma,
and I am pleased that he has joined us here today.
ARTETCERH.
Dean & CEO, Mount Sinai School of Medicine

       I would like to webome you all. We are both privileged and very proud to host this Asthma Summit  To
deal with this very serious problem is a challenge that, for a medical institution hike Mount Sinai, is high on our agenda.
 And being able to cooperate with a variety of government and regional associations and organizations seems to me
to be the very best way to go. It is obvious to us now that difficulties in the population have shifted from acute
diseases to chronic diseases like diabetes, obesity, and asthma. In terms of morbidity and mortality in the population,
these are the challenges that face us, and from that point of view, we are particularly invested in working with all of
you to try to do better in serving our communities.

       From Mount Sinai's point of view, located where we are—right on the border of East Harlem and committed
to that population, which has such a high incidence of asthma—this Summit is extremely important This meeting will
help us both inform and become educated in some of the new ways of dealing with this challenge. You might also
know that, for a very long time, we have had a Department of Community and Preventive Medicine that is very
involved in this kind of activity. Prevention activities, in terms of education of our students as Wei as home care in
the community, are high on our agenda. From our students' and residents' points of view, this approach is extremely
important.
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        I also want to stress the interdisciplinary nature of dealing with a severe, chronic disease such as asthma,
which has so many components. The stress recently on interdisciplinary efforts., both at a local, interdepartmental
level and stretching far outside our walls to interact with people in the city, state, and country, is very important to us.
 So from my own point of view, there could be almost nothing more important than the opportunity for us to welcome
you here and tell you how committed we are to dealing with this very serious problem in the best way possible. I
wish you great luck in this Summit You certainly have the support of Mount Sinai. Thank you very much.
NEALL. COHEN, MD, MPH
Commissioner, New York City Department of Health
                                                                              i

        Good morning. On behalf of the Mayor and the City's Department of Health, it is my pleasure to welcome
you to mis Asthma Summit Like most cities in Region II, New York has witnessed a rising tide in asthma morbidity
for more than a decade. Between 1988 and 1997, asthma hospitalization rates in New York City increased by 22
percent The largest increase, more than 60 percent, was seen in very young children. lit New York City, children
are three times more likely to be hospitalized for asthma than children in the United States as a whole are. Asthma is
by far the leading cause of hospitalization in this City for children 14 years of age and younger.

        In response to these figures, the City initiated a significant public health campaign. Launched in 1997, the
New York City Childhood Asthma Initiative set out to halt asthma-related hospitalizations and to help children better
manage the disease.  Three years into this effort we are beginning to see positive results. By providing state-of-the-
art care to an ever-growing number of young people, we are beginning to narrow |the disparities in asthma
hospitalization rates that exist in our communities. In 1998, we began to see significant declines in both emergency
room visits and hospitalizations for asthma in children younger than 15 years old.

        These promising results do not tell us that the battle against asthma has been won, or that the tide has turned.
 Rather, the numbers suggest that the community-based approach that lies  at the heart of our Childhood Asthma
Initiative has merit These statistics tell us that family-focused education, environmental activism, state-of-the-art
medical diagnosis and treatment, and community participation in asthma  control efforts are  effective tools in
addressing asthma morbidity.

        We are pleased to see that what many assumed to be an intractable public health problem seems to be
responding to a coordinated series of interventions. And we are delighted for another reason. Our Childhood
Asthma Initiative represents a brand-new direction for the City's Department of Health. It is the first of several
initiatives that we have launched to make the  Department of Health a more community-focused agency.  The
Childhood Asthma Initiative was, in many respects, an experiment. We set out to develop new kinds of partnerships
with families, with schools, with community-based organizations, and with health care providers.

        The Department of Health has served to bring stakeholders together. We have been an educator, reaching
out to professionals, to parents, and directly to children. We have contributed resources in the form of public service
advertising, information, devices, and disease management strategies.                [
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       What we have not done is to impose one solution for treating asthma on a very diverse metropolis. This
disease does not lend itself to a one-size-fits-all public health effort.  Asthma rates in New York City differ
substantially from community to community. While rates are highest in low-income communities, there is not an
exact correlation between prevalence and poverty. Some low-income communities are at higher risk for asthma than
others are.  For this reason, addressing asthma necessitates focusing on local needs. It requires a public health
department, accustomed to centralized control, to share authority. Our partnership model does precisely this. It shifts
the locus of control from the Department of Health's central office to the community.

       Using this partnership model, the City's many communities can make best use of their resources and
expertise. Our model takes cultural diversity into account and relies on educational efforts that speak directly to
families and children. And it seeks to work with and contribute to the ongoing efforts of others.

       Our initial success suggests that the model we have developed may be useful to other Region n cities
concerned about asthma. We would be delighted to share the specifics of our approach with you this afternoon. We
also want to learn from you. Your efforts to combat asthma can help us improve and expand our Childhood Asthma
Initiative.

       Thank you for coming. And I thank those at HRSA, at Mount Sinai, and at EPA, as well as all the others
who have worked so hard to bring us together at this Summit.
ALISON E. GREENE, JD
Regional Director, Department of Health and Human Services-Region H

        I am very pleased to be welcoming you this morning, to this very aptly named "Summit" on asthma, on behalf
of myself as Regional Director for HHS's Northeast and Caribbean Region, and to bring you greetings on behalf of
Secretary Donna E. Shalala, Secretary of Health and Human Services. Many people in our Department have
worked very hard to make this conference a success, and I would like to recognize, with thanks to all of our HHS
staff, Dr. Margaret Lee, Dr. Gil Cardona, HRSA Director Ron Moss, and Maureen O'Neill from the EPA.

        We have gathered together under the auspices of Mount Sinai School of Medicine, the Environmental
Protection  Agency, and the  Department of Health and Human Services—Health Resources and Services
Administration, and with help from the Robert Wood Johnson Foundation. We have gathered together in New York
City, in the epicenter of the US asthma epidemic, to identify current national and local asthma prevention activities, to
identify the scope of the problem, and also to identify opportunities for partnerships between federal, state, and local
government as well as community-based organizations and providers. We hope to share strategies for improving
health services in high-risk communities and to provide a forum for state- and territorial-specific asthma action plans,
which will be linked to the National Asthma Plan announced by Secretary Shalala a few weeks ago on May 5th,
National Asthma Day.

        There is good cause to be meeting here. New York City has reported the highest asthma prevalence rate of
any county in the United  States. The 1997 UDS reports for the  HRSA-supported health centers  in our region
showed that asthma is the number one cause of medical care visits by children and that asthma patients account for
four percent of their total patient population, a staggering 43,318 patients. Hospitalization rates due to asthma for
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 Region II are significantly higher than the Healthy Year 2000 objectives of 160 per 100,000 for children 0-14years of
 age.
                                                                              i
        Something is obviously going on here, and there are no easy answers to this epidemic. From 1980 to 1996,
 the number of Americans with asthma more than doubled, to almost fifteen million, with children under five years old
 experiencing the highest rate of increase. Reasons for these increasing rates remain unclear. Asthma has become
 an enormous public health problem as well as an enormous educational challenge, as the increasing rates dictate that
 in every classroom with 30 children, there are likely to be at least two with asthma.  Thatadds up to over 10 million
 school days lost to asthma each year. As Secretary Shalala has pointed out, asthma is the leading work-related lung
 disease; it kills over 5,000 Americans and results in half a million hospitalizations per year.  In addition, asthma hits
 minorities and the poor especially hard.

        The various  divisions of HHS have already embarked on instituting activities that address the growing
 problem of asthma in our Region:

 •   Administration for Children and Families (ACF): has instituted asthma training for childcare staff as a major
    need, as well as providing technical assistance and training in asthma management to its Head Start agencies
 •   Office of Minority Health:  has funded asthma community outreach projects with New Jersey and New York
    states                                                                     ;
 •   Health Resources and Services Administration (HRSA): conducted a survey in the summer of 1999 of major
    HRSA grantees  (which included the state's MCH programs and the NYC DOH) to evaluate what current
    asthma activities were in place and where needs were greatest; HRSA also provided funding for this Summit,
    along with EPA, as well as providing funding to the Clinical Directors Network for four asthma intervention pilot
    demonstration projects to test the benefits of combining clinical and environmental interventions at community
    health centers in New York, New Jersey, and Philadelphia.

        These activities and others have enabled our Region to take a leadership role in addressing the growing
problem of asthma here and nation-wide and in implementing, where possible, the top priorities for the Secretary's
 Asthma Initiative.

        As a member of the Secretary's Work Group on Asthma, I am proud of the strategic plan issued earlier this
month but mindful of lie challenge we face. As noted, we have made  progress, but we are not yet close to
understanding the causes neither of the asthma epidemic nor to providing optimal care. We need to improve the
availability of quality asthma care, especially to underserved populations. This objective is feasible and can be
accomplished by coordinated efforts,  such as the efforts made here today. We must also increase research efforts to
deal with chronic persistent asthma and to prevent the onset of the disease.

        I look forward to listening to our commissioners as they address their state-specific asthma needs and plans.
I also look forward to continuing to work together with all of you, in partnership, to combat asthma in our Region and
in the United States.  To paraphrase Eleanor Roosevelt, "We must do the thing that can't be done."
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JEANNE Fox, JO
Regional Administrator, US Environmental Protection Agency-Region II

       I'm pleased to join all of you for today's important discussions on the epidemic of asthma that is sweeping
through our nation. Asthma can be devastating, not only for those who suffer its symptoms, but also for their families
and for our nation's economy. Its causes remain a mystery.  Its triggers are just becoming better understood. We
have much work to do.

       The challenges before us are heightened by the demographics of the disease.  Asthma disproportionately
affects residents of urban areas and low-income communities, minority populations, and our nation's children. These
are people more likely to be exposed to unhealthy air quality, and they are less likely to have ready access to health
care.  They are among our nation's most disenfranchised populations.  How we respond to their needs speaks
volumes about our society and its values.  Unfortunately, to date, our response has not spoken well.

       My hope  is that, after these two days, we will begin to change that dynamic—that we will  all leave here
resolved to build broad-based coalitions for a multi-pronged attack on this disease. That we will begin to use every
tool in our arsenal, be it educational, medical, or political, to fight back and to turn the tide.

       One of the most basic  strategies to combat asthma is obviously research.  Until we can understand the
causes of asthma, we are hampered in our efforts to prevent its spread. In the meantime, we must ensure that those
who suffer from asthma have access to the treatments that can prevent its most devastating effects.  Access to an
emergency room in a crisis is not enough. We must expand access to the drugs that can prevent the need to visit a
hospital emergency room.

       We must  also educate. Despite the many mysteries that remain, in recent years, we have learned much
about how to better manage asthma. We must expand our efforts to educate those who suffer from this disease
about how to keep it under control. And hi the case of children, we must reach out to parents and teachers to help
them recognize the symptoms of asthma and understand how to react when an asthma attack occurs.  And we must
teach people how  to reduce asthma triggers such as indoor tobacco smoke, pesticide residue, pet dander, and dust
mites. Preventative measures not only reduce asthma symptoms and the need for medication, but they also improve
lung function.

       For now, education is our greatest tool. Teaching patients, parents, and educators about asthma management
skills does more than just reduce the need for medical treatment. It also improves quality of life for the asthma
patient.

       Finally, let us recognize the value of building strong partnerships to tackle this disease. Patients, parents,
educators, health care providers, medical researchers, community organizers, housing advocates, and environmental
regulators all have a role to play in combating asthma.  We can each go our separate way, or we can join in a grand
coalition that leverages our resources and increases our clout as we seek to manage, prevent, and cure this disease.
Developing consensus on goals, strategies, and priorities may, at times, be frustrating. But the benefits of harnessing
our joint energy and power outweigh the difficulties.  We have much to learn from each other, and much to gain by
the effort.

       In recent years, EPA has begun to focus more pointedly on the issue of children's health. It has become a
priority for us, both regionally and nationally. Pediatric asthma is certainly one of the greatest concerns. Among the
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projects we?have funded is one with the Clinical Directors Network, a non-profit organization of primary health care
providers, to work with community-based clinics to improve their methods of treating asthma. One focus of the
project will be to address the home environment as part of their asthma treatment.

       We have also given Mount Sinai Children's Health Center $70,000 to track the relationship between pesticide
exposure and asthma in East Harlem children. And we've given Rutgers University in Camden $155,000, with
another $110,000 anticipated, for the development of an education and intervention program on lead and asthma in
Camden.

       These are the types of partnerships we can create to address the threat of asthma. And by gathering here
today, we have taken the first step. Let us pledge to join forces in an even wider coalition to end this epidemic.

       My thanks to all of you who have given your time to bring this Summit to fruition. I particularly want to
express my appreciation to the Human Resources and Services Administration, under the leadership of Alison
Greene and Dr. Margaret Lee, and to  our partners at  Mount Sinai  and the Robert Wood Johnson Foundation.
I? would also like to thank my colleagues at EPA—Maureen O'Neill and Rachel Chaput from the Regional Office,
Ramona Trovato, the head of our Office of Children's Health Protection, and the many staff of our national Office of
Indoor Air Quality who are here with us today. We are especially grateful to these two offices for their commitment
of funding for follow-up activities generated from this Summit

       Let me conclude by saying that I look forward to working with all of you, in partnership, to end this disease.
Thank you.
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OVERVIEW OF HRSA's ASTHMA STRATEGY : KEYNOTE ADDRESS

CLAUDE EARL Fox, MD, MPH
Administrator, Health Resources and Services Administration

       I want to thank Ron and all of the other staff, people in and outside of HRSA who have been a part of
putting this wonderful conference together. I welcome this opportunity to discuss the Department and HRSA's role
in the nationwide effort to combat asthma. And I want to commend Region II for stepping forward to do something
that, at this point, none of our other regions have done, but I hope that they will take their cue and put on similar
meetings and have similar activities like this addressing the issue of asthma. I want to also, again, acknowledge our
co-sponsors—Mount Sinai School of Medicine and the EPA's New York Field Office. People think of the CDC and
the EPA as collaborating, but they don't think so much of HRSA and the EPA as collaborating, and I think that this is
only one of several examples of things that we need to be doing together so I hope that this, again, will grow.  We
also want to thank Robert Wood Johnson for their support, and we also will be meeting with them and with others as
follow-up to this conference to see what we're going to do next. I also want to thank all of the previous speakers for
having given my speech, but I'm going to go on and say it anyway.  I've never been deterred with that.

       This focus on asthma is both timely and urgent. Here in New York City, we have the highest asthma
prevalence rate of any county in the nation.  It is an epidemic. Our HRS A-supported health centers in this region
report that asthma is the number one cause of medical visits by children. Asthma has reached epidemic proportions
hi the United States—creating a health care crisis that costs the nation more than $11 billion each year, over two
times the annual HRSA budget. It's a huge, huge problem.

THE PROBLEM
       Women are more affected than men. African Americans are more affected than whites, nationwide. Over
the past 15 years, the number of Americans with asthma has doubled to 15 million people, with the highest rates
among children under five years old. And as a previous speaker mentioned that she was diagnosed with asthma as
an adult, I was diagnosed with asthma as a child, and I'll tell you,  it's a frightening condition.

       Today, 5 million children and young people under age 18  suffer from what has become the most common
chronic childhood disease hi this country.

       Minority children and children from low-income families are especially vulnerable. Some of the reasons for
the disparities are known, however, many are largely unknown. Some of the issues are environmental. The rate of
asthma deaths among African American children is four times higher than among white children. And hospitalization
and death rates for Hispanic children here in New York City are three times higher than the national average.

        These statistics paint a disturbing picture. How do you mount an effective public health campaign against a
disease whose causes are multi-factorial, resulting from the complex interplay between environmental exposures,
genetics, and other host factors?


        I have some thoughts on that, and I will give you a few at the end of my comments. At a meeting earlier this
morning, I made the comment that we have succeeded in this country in ways that many of us would never have

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thought possible hi the way we have addressed childhood immunizations.  We have the highest immunization rates
that we have ever had in the United States among two year olds. And I think that we have succeeded because we
have done everything.  We've not just done one or two things.  We've done everything that we know to do to
address getting our children immunized. And I would say that hi asthma, we are going1 to have to take the same
approach.  We are going to have to do everything that we can possibly do because asthma is so multi-factorial.

       The answer has to be better research and surveillance and more effective patient management and education
strategies. We may not have a cure for asthma right now, but there is a wealth of good information on how to treat it.
The task is getting this information to the people and communities where the need is greatest

THE HHS STRATEGY TO COMBAT ASTHMA
       Three years ago,  Secretary Shalala recognized the growing problem of asthma and called for a major
Department-wide initiative to address this pubh'c health emergency. She pulled together Ihe vast resources of the
Department for the sole purpose of designing a comprehensive strategy to guide our work in combating this disease.
The outcome of this effort is a plan the Secretary released just a few weeks ago called Action Against Asthma: A
Strategic Plan for the Department of Health and Human Services.

       The plan focuses on ways to better prevent and manage the disease and also to eliminate the disparities that
cause asthma to so adversely impact low-income and minority communities. It is shaped around four priorities that
we think need to be applied both nationally and locally.

    •  The first priority is research. We must do a better job of determining the causes of asthma and preventing
       its onset To improve primary prevention particularly for high-risk patients, we must expand our research
       efforts into the causes of asthma.  I'm pie ased that our partners at NIH are part of this conference. Good
       research is the foundation of solid prevention strategies. If we could only do one thing, we would probably do
       a great deal of primary prevention. The HHS plan puts a high premium on research, including studies of the
       natural history of asthma, risk factors, genetics, and environmental impact The good news is that many of
       these research projects are already underway.

    •  The second priority is that we must also work harder to reduce the burden of the disease. One proven way
       to accomplish this is through better patient management. I read a story recently about an 11-year-old girl
       who had made more than 20 trips to the emergency room for treatment of her asthma. Yet no physician had
       taken the time with her or her family to teach them how to better manage the disease themselves and to
       prevent recurrent ER visits.  To rectify situations Mice this, HHS will expand its investment in outreach
       campaigns and will encourage providers to make better use of the Guidelines for the Diagnosis and
       Management of Asthma—an essential tool for the reduction of fatalities, emergency room visits, and
       hospital stays. I think one of the challenges here is how do we take science to practice. Many of you are
       aware of how long it took the medical community to translate appropriate treatment for gastrointestinal ulcer
       disease, which we now know, hi large part, is an infectious process created along with anti-acids and
       antibiotics, how long it took the practicing  community to translate what they were doing based on what
       science knew. And I think our challenge is the same with asthma. I occasionally do some clinical work on
       the weekends, and I still see children who are inadequately treated for asthma in the year 2000. Many of us
       have distance-based learning systems that we manage or are involved with. How do we use these to get
       science to practice?                                                    '.

    •  The third leg is the issue of racial disparities. Eliminating the disproportionate burden of asthma on poor and

                                               23                            :

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       minority communities is key to the success of our overall action plan. We can do this by improving access to
       quality care and by promoting wider use of scientific knowledge to diagnose and manage asthma among
       minority and low-income individuals.

    •  The fourth leg is data. We now have national estimates about the impact of asthma; we lack the same when
       it comes to the states and local communities. There is a famous comment about politics, and I think you can
       make the same comment about data, "All data is local, or it should be."  Despite the fact that Healthy
       People is an excellent document, we only have about thirty percent of the objectives that have any data that
       can even be taken down to the state level, much less the county or local level. The challenge in data is how
       do we get data that we can translate into action. It's great that we have national estimates, but until we
       know the data that occur in your community, how do we know where we are?  And if we take further
       interventions and  actions, how do we know  where to go? That's why our last priority is so critical.
       Improving the tracking of the disease and the effectiveness of asthma programs will help us to better
       understand how the incidence of asthma varies from one location to another—what programs work and
       which ones don't...all allowing a more targeted public health response to the disease.

       I want to make a further comment here that we have opportunities in the area of data around what we do
with our Medicaid data and our public health data. One of the major initiatives on the part of HRSA is to look at how
to do that more effectively. We recently signed a memorandum of agreement between HRSA, HCFA, and CDC to
encourage states to link their Medicaid data. I grew up in the public health system at the state and local level, and I
spent my entire career being told that we cannot match Medicaid data. That is not true. This memorandum from the
three agencies that came out about a year and a half ago was primarily written in an attempt to tell state governments
that, one, it is legal to match Medicaid and public health data; two, we want you to do it; and three, we will help you
do it with a model data-sharing agreement and some other things. So I would challenge you in the area of data to
look at what you are doing in your state and in your community. We need more data.  We need better data on
morbidity, but I think quite frankly that we are not using well the data that we have.

       To help accomplish these priorities, the President's 2001 budget calls for an investment of $192 million in
research, surveillance, and  outreach efforts—an increase of $10 million over the 2000 budget   Also  the
Administration has proposed the Asthma Disease Management Initiative, which would provide $50 million hi 2001
and 2002 to sleeted state Medicaid programs to test and evaluate the effectiveness of innovative asthma
management approaches in the treatment of children. We spend a lot of money at HRSA on asthma, and we spend
a lot of money at HCFA on asthma, and we want to spend that money as effectively as we can.

       The Department's Asthma Action Plan is the right answer to the recent Pew Environmental Health
Commission's call for the nation to dedicate more of its resources to prevent further growth in the asthma epidemic.
In fact, many of our recommendations can also be found in the Pew Report.

       Our strategy is also in line with the work of the President's Task Force on Environmental Health Risks and
Safety Risks to Children, which has set  controlling asthma as a top priority. They have identified four goals that I
want to share with you:

    •  By the year 2005, asthma hospitalization rates in children will have fallen to no more thanlO per 10,000.

    •  And, by the year 2010, the number of households in which children are exposed to secondhand smoke will be
       reduced to 15 percent; emergency department visits will be reduced to no more than 46 per 10,000; and no

                                               24

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        more than 10 percent of children with asthma will experience activity limitations.

        Secretary Shalala co-chairs this task force, and we believe that the HHS Action Plan will help make real
these most worthwhile goals.

WHAT HRSA IS DOING
        NIH is about research, CDC is about prevention, HRSA is about access.  Our whole agency is about access
to health care. We play a key role in the Secretary's Plan to Combat Asthma, and I would like to mention a few
examples starting right here in Region H

        HRSA and EPA have joined forces to sponsor a pilot asthma project that includes four health centers located
in Region n and Philadelphia in poor, minority communities with high rates of asthma. .The pilot sites will follow
approximately 200 children from 6-12 years old with the goal of developing a model of clinical care and environmental
interventions that will reduce incidences of asthma or improve asthma treatment. I think these models can then be
exported to a whole variety of sites.  We have, within bur system alone, 3,000 health centers that serve over twelve
million patients. So if we learn best practices models here, I think we have a tremendous opportunity to transport
these both inside and outside of our system.

        We also work very closely with all of our Maternal and Child Health block grantees, of which we put over
$700 million in the states on asthma.  All states now report on a set ofperfbrmance measures, and I'm pleased to  see
jhat all the states in this region selected asthma hospitalization rates for children as one of their Maternal and Child
Health block grant performance measures.
                                                                             i
        We also provide leadership  in another area related to children. Currently we support Pediatric Pulmonary
Centers at seven sites across the country, and we've just awarded another five-year cycle of these particular grants.
 The work of these centers is truly outstanding.  Our friends here at Mount  Sinai have one of those Pediatric
Pulmonary Centers and have made particular strides in the area of asthma education and awareness. And the work
there is so well recognized that the Project Director, Dr. Meyer Kattan, has served as a member of the Asthma Task
Force supported by the New York City Department of Health, the New York State Department of Health, and the
New York Academy of Medicine. We also fund, through the Maternal and Child Health Bureau, a project called
Healthy Tomorrows with the American Academy of Pediatrics, where we have projects in places like the New
York Hospital, Bronx, Montefiore, and others trying to look at what we can do  in the area of asthma.

        In the area of primary care, we have a number of ongoing asthma-related activities. Many of our community
health centers—particularly migrant, school-based, and homeless centers—have  asthma projects that focus on
improved care for at-risk individuals.


        In addition, 23 HRSA-funded health centers are participating in the Institute for Healthcare Improvements
Breakthrough Series on Asthma. This is a model that requires a health  center team to set specific goals and
measures for improved asthma care and to implement the model and rigorously evaluate it over a span of 12-24
months. It serves as a very intensive clinical model used to determine what kind of interventions can actually pay off
in improvements in clinical care. We're also piloting a small-scale asthma prevalence study in the border states of
California, Arizona, and New Mexico to look at the correlation between air quality and the incidence of respiratory
illness.
                                               25

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       These are just a few of the asthma-related activities underway at HRSA, and we have the opportunity to
export what we learn elsewhere.

THE CHALLENGE
       I want to end with issuing you some challenges.  I would like to think that as we have done with
immunizations, we can get our arms around this problem. We do a lot of good for a lot of people, but I think the
bottom line is whether we can show that it actually pays off in improved clinical outcomes and unproved clinical
indicators. I have to believe that we can do this with asthma.  I would also like to believe, and I keep coming back to
the immunization analogy because I think that it is an excellent one, that in the area of asthma, it's not the issue that
we don't touch these children that are affected with asthma.  We do touch them. We touch them everyday, but we
are missing opportunities. We don't think to do the counseling, we don't think to ask about the environmental issues,
we don't think to look at the other issues that would possibly impact their care and their outcome. That is one
challenge.

       Second, we have to think about, at the state level,  how we are funding our public programs to support
opportunities for intervention in areas such as school health. It makes sense, and it seems logical to me, that in almost
every state where we have CHIP and Medicaid, which fund virtually every child under 200 percent and in some
states under 250 or 300 percent of the federal poverty level, that we should be able to go into school systems and set
up school-based health services that could almost totally be supported out of the reimbursement for CHIP and
Medicaid. Now, we fund school health services through HRSA, and we are going to continue to do that, but we are
not funding anywhere near the number of school clinics and school health activities that we need to fund. I would
challenge you to think about ways to work at the state-level to maximize CHIP and Medicaid to fund school health
services.

       The third challenge is how do we work together? Again, I have grown up in twenty-seven years of public
health. We have categorical programs. Congress likes categorical programs. Congress is going to continue to fund
categorical programs. The challenge is this: even though we need more resources in the system, how do we make
sure that we are working together? I think it's fantastic that HRSA has the activities we have with the EPA and
with other departments. But my experience is that we often have a hospital on one corner, a health department on
another corner, a community health center on another comer, and some other entity on the fourth corner, and none of
them work together or do any joint-work plans.  The right hand does not know what the left hand does.

       One of my goals at HRSA is to improve communications. We have almost $5 billion of HRSA grants in the
community. Do  our grantees  even know that the others are there, much less whether or not are they working
together? What are we doing with our other partners within the department, like with the CDC? What are we doing
with state and county public health? My point here is that we have categorical programs. The challenge is how do
we at the community level make them seamless?  I do not think, quite frankly, that Congress in any time in the
foreseeable future is going to do away with categorical programs. And so the challenge for me throughout my entire
career as an administrator has been how, at the service-delivery level, do we make those programs come together in
a way that patients do not see that categorical nature. And I will tell you that I am absolutely convinced that we do
not have any significant constraints federally. Our constraints are our inability to c onceptualize what it is we ought to
do. I am convinced that most of the federal statutes and most of the things that we do, do not prevent us from putting
together a better system at the community level to deliver services. I think our inability is two-fold: one, we often do
not know and understand what the other does, and two, I think we often do not sit down and think about how we
could do it together so that the whole is greater than the sum of the parts. And I would challenge you to help us think
about doing this.  We sit around the table at HRSA, and everyone agrees philosophically that we ought to integrate

                                              26

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our services at the community level, but where we fall down is in asking what do we do different tomorrow? And I
would challenge you to help us think about that.

       We have the ability to come up with some outcomes from this conference.  I go to a lot of meetings, and I
am sure you do too. If this meeting today, with its outstanding agenda, turns out to be just another meeting, then we
have failed What I hope that you will help us do, with your collective brainpower, is to think about not just what we
can continue doing, but what we can do differently.  We have opportunities in data, we have opportunities in
translating science to practice, and we have opportunities in marshaling our resources together. Do not come and tell
me, "If we only had a zillion dollars, we could do this." We are not going to get a zillion dollars.  The challenge is to
approach this as if we will have no more dollars five years from now in the area of asthma than we have today. If
you knew that with absolute certainty, what would you do differently today to get to the point five years from now
where we had a better system for asthma care for children?  I think we should approach it that way. Having said
that, we are all going to go out and advocate for more money. I hope we have more money, but if we don't have a
good plan, if we don't do a good job with our data and our systems with what we have now, we are not going to do
that much better a job if we have 10 million or 100 million more dollars. I am absolutely convinced of that  As you
go through the next two days, come up with a series of recommendations that we can get our arms around, that we
can make happen, and that, I hope, we can measure. And at the end of the time, whatever the time frame is, that we
can know that we have unproved the service-delivery system for children and actually had a very positive impact on
asthma in this country.
                                               27

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STAIE HEALTH COMMISSIONERS PANEL

ALISON E. GREENE, JD
Regional Director, US Department of Health and Human Services-Region H

       Ms. Alison Greene served as the moderator for the State Health Commissioners Panel. Presenters for this
panel included Christine M. Grant, JD, MBA; Kenneth C. Spitalny, MD, MPH; Carmen Feliciano de Melecio, MD,
MPH; and Mavis L. Matthew, MD, MPH.
CHRISTINE M, GRANT, JD, MBA
Commissioner, State of New Jersey,
Department of Health and Senior Services

Today, I will discuss several aspects of asthma in New Jersey.  They include:

          •   The goals regarding asthma in New Jersey for the current and coming years

          •   How we collect data and the improvements we are making

          •   New Jersey's current asthma programs and what we are planning in the near future

          •   Current and future partnerships

          •   Public health programs to promote access to treatment

          •   Recommendations to HRSA and DHHS

GOALS FOR ASTHMA FOR THE CURRENT AND COMING YEARS

    •  In 1996, there were 16,265 hospitalizations in New Jersey for asthma. African-Americans, Hispanics, and
       other minorities accounted for 59% of tibie hospitalizations. This is a disproportionately high number.
    •  More than 75% of the hospitalizations were for children under 19, and of those, almost half were for children
       under the age of five.
    •  New Jersey's Department of Health and Senior Services has made preventing and reducing the incidence of
       asthma attacks and decreasing the number of hospitalizations and deaths due to asthma a significant part of
       Healthy New Jersey 2010, our State's public health agenda for the next decade.
    •  Each objective in Healthy New Jersey 2010 has a specific target goal to be achieved in 10 years, along with
       a preferred 2010 endpoint. The target goals and preferred endpoints are very ambitious.
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    •   Eliminating racial disparities in health delivery is an overriding goal throughout Healthy New Jersey 2010.
        This is particularly applicable to our asthma goals and objectives, and specific goals and preferred endpoints
        have been developed for African-American and Hispanic populations as well as for the overall population.
        The objectives for asthma in Healthy New Jersey 2010 are:
            >•  To reduce the age-adjusted death rate from asthma
            >  To reduce the asthma hospitalization rate
            >  To reduce the asthma hospitalization rate of children under the age of five
            >  To reduce the rate of emergency department visits due to asthma
    •   The Department believes these goals are ambitious yet achievable through the provision of educational
        programs, advanced medical management techniques, and  increased public access  to primary care
        throughout New Jersey.

DATA COLLECTION AND SURVEILLANCE
    •   Before we can achieve these goals, we need meaningful data and methods of tracking our successes.
    •   Currently., the only asthma data collected in New Jersey are deaths and hospital admissions.
    •   The 2000 NJ Behavior Risk Factor Survey conducted by the Department will ask questions about asthma for
        the first time.  This will provide an estimate of asthma prevalence among adults.
    •   We are in the early stages of developing a surveillance system for asthma under the leadership of our State
        Epidemiologist, Dr. Eddy Bresnitz. One aspect of the development is investigating the feasibility of tracking
        additional measures of asthma morbidity and prevalence, including emergency room  visits, outpatient
        utilization, and school absences, and implementing a survey to determine prevalence in children.
    •   By modernizing this reporting system, the Department can assess the effectiveness of asthma management
        in primary care settings.                                                .

ASTHMA PREVENTION ACTIVITIES
    •   Under Governor Whitman's leadership, New Jersey has developed strong programs to address asthma
        prevention.
    •   In response to the large disparities in asthma deaths and hospitalizations that exist in various communities, our
        Department convened  the New Jersey Minority Health Asthma Network.  The Network was created
        through our Office of Minority Health.
    •   The Network targeted the cities of Newark, Trenton, and New Brunswick. An asthma resource directory,
        in English and Spanish, was prepared for the three cities, and people from these communities were trained to
        be asthma educators.                                                  '.
    •   The Network is a comprehensive resource that includes toll-free numbers to national and state organizations,
        more than 100 different programs throughout New Jersey, links to web sites, and e-mail addresses. The
        Department has made the resource directory available to consumers and physicians on our web site at
        www.ni .state.us/health.
    •   There will be an in-depth presentation about the Network and its activities in one of the workshops this
        afternoon.

ACCESS TO PUBLIC HEALTH PROGRAMS FOR ASTHMA
    •   For many years, our Department has operated a Special Child Health Services Registry. Physicians and
        health care facilities are able to register any child with a chronic medical condition that may require special
        assistance. Registration is voluntary. The families are then offered assistance through case management
        agencies in each county.
    •   Asthma is one of the diagnoses for which children can be registered with Special Child Health. Currently
        there are about 3,000 children with asthma registered.

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    •   Children registered with asthma or cystic fibrosis is eligible for State assistance in paying for medications for
       these conditions if they do not have insurance that will cover these medications.
    •   Our Department recognizes that the number of children registered due to asthma is only the tip of the
       iceberg of all children with asthma in New Jersey. We are planning to investigate how the Special Child
       Health Services Registry and case management system might be better used to assist children with asthma.
    •   The estimated number of children with asthma in New Jersey is much higher than the number suffering from
       any other condition currently covered by this system. Our challenge is how to use or build upon this proven
       service system without having it be overwhelmed by the large number of children with asthma. We need to
       ensure that the system  is able to effectively serve any and all of the families in New Jersey who need its
       assistance.

ORGANIZATIONS AND PARTNERSHIPS IN NEW JERSEY
    •   Asthma is a disease that cannot be addressed only by government. We need to develop partnerships with
       community-based organizations, the private sector, and educators.
    •   Our primary partners have been the American Lung Association of New Jersey and the University of
       Medicine and Dentistry of New Jersey's Allergy and Asthma Resource Center.
    •   We are particularly grateful to the Lung Association for stepping forward and leading the creation of the
       Pediatric Asthma Coalition of New Jersey.  More than 40 organizations are already participating in the
       Coalition.
    •   Another major partner has been  our statewide network of seven regional Maternal and Child Health
       consortia.
    •   I particularly want to recognize both the Gateway Maternal and Child Health Consortium for facilitating the
       formation of the Newark Pediatric Asthma Coalition, and the Central New Jersey Maternal and Child Health
       Consortium for creating a regional Pediatric Asthma Practice Council.
    •   Moving forward, we would like to see these kinds of local asthma coalitions in operation in every part of the
       state, and we would particularly like to see more involvement of primary care physicians in these efforts.
    •   Another new area is  addressing issues related to managing asthma in children while they are at school.  The
       Department is working closely with our State Department of Education and the American Lung Association
       to increase participation among all members of the education community—school boards, administrators,
       principals, teachers, coaches, school nurses, and parents—regarding this issue.

RECOMMENDATIONS TO HRSA AND HHS
    •  Since  asthma treatment and prevention modalities often involve modification of the environment, we
       particularly need creativity and flexibility on the part of HCFA and HRSA.  We need Medic aid and health
       centers to be able to pay for proven environmental treatments for asthma.
    •  For example, HCFA has shown creative flexibility in dealing with lead poisoning in children by approving
       coverage  for  environmental inspections and for environmental  abatement  work,  such as window
       replacement, in some  states.
    •  This same flexibility should be applied to environmental treatments for asthma, and should be nationwide, not
       just limited to state waivers.
    •  Asthma is a national problem, but each state has its own unique set of challenges. Each of us has to develop
        a system for tracking asthma in our own jurisdiction.
    •   Still, there is no reason for each state to re-invent the wheel for asthma surveillance. We look forward to
        increased leadership and support from the CDC in defining model asthma surveillance systems, indicators,
        and methodologies, as well as to sharing data collection methods developed by particular states with the rest
        of the nation.
    •   We are pleased that HHS has recently released its strategic plan for "Action Against Asthma." We

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        understand that HRSA and other agencies within HHS, as well as other Federal Departments, are working
        on similar plans.
        This Summit is an important first step, bringing the states together to communicate and exchange new ideas.
         Kudos to HHS and HRSA for bringing us together.  We now need to develop more of the kind of
        collaborative effort demonstrated by DHSS, EPA, and HUD in the national Lead Poisoning Prevention
        Education Campaign and the "Healthy Homes" initiative.
        For our part, I urge everyone from New Jersey who is here at this conference to participate in the breakout
        session to discuss what is needed in our State and to give us your recommendations about what the State
        government needs to be doing. We will have representatives at that session, not only from the Department
        of Health and Human Services, but also from Medicaid, New Jersey KidCare, and the Department of
        Environmental Protection.
KENNETH C, SPITA!^ MB, MPH
Assistant Commissioner, Health Initiatives,
New York State Department of Health

                         A Shifting Paradigm for Reducing Asthma Morbidity

       It's a pleasure to be here today and to represent both Governor Pataki and Health Commissioner Novello.
The Governor and Commissioner have placed asthma at the top of their health agenda.  A centerpiece of the
Governor's recent State of the State address is the goal to reduce pediatric asthma hospitalization by fifty percent.

       Today, I will describe the odyssey the Department has taken to reach our present position and the course we
hope to embark on. Today,  you will hear much about how poorly the nation, the region, the state, and the city have
performed in both the prevention and care of asthma. Over the past decade, we have learned much about asthma,
we have discovered new agents to broaden bur therapeutic arsenal, and we have learned much about the behaviors
of those affected by asthma and of their health care providers. Yet, the dimension of the problem looks worse than a
decade ago.  We have been looking at the symptoms of the problem, and not at the root cause.

       A major problem is that there has been little coordination and no comprehensive plan. Asthma is ignificantly
different than many of the public health problems with which we have dealt It cannot be easily corralled into its own
project arena. It reaches every aspect of our agencies and organizations on both public health and health care, and it
touches us at our very core. This type of problem that asthma poses has been called a "systems" problem, and the
solution requires system thinking. The Department has begun its system thinking.

       The State Department of Health convened six regional asthma workshops in order to allow key stakeholders
to hear what others are doing and to determine ways to collaborate. In order to encourage stakeholders to work
together,  we fashioned a Request for Proposals from the suggestions of workshop attendees, with the aim of
supporting team thinking, planning, and action.                                    ,

       The Commissioner  has asked us to take the next step  so that we are not only working together, but are also
working  effectively.  The  direction towards which Dr. Novello is leading is an evidence-based one: case
management It is an effective strategy for reducing asthma morbidity. Case management is a process of patient
advocacy requiring the alignment of provider and community-based systems  to  ensure appropriate medical
management and patient adherence to recommended intervention.  It requires: 1) an appropriate treatment plan; 2)
targeted education directed  at changing behaviors; 3) outreach to  ensure the care plans are enacted; and 4) trust
between provider and patient

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       It is my hope that this conference will inspire us to work together with a shared vision and a common goal.
We are at the crossroads.  At this conference, I hope we will explore ways we can incorporate asthma case
management into the provision of health care and the practice of public health.
MAVIS L. MATTHEW, MD, MPH
Assistant Commissioner of Health; Director, Maternal & Child Health Program, Virgin Islands
Department of Health

       On behalf of the Virgin Islands Department of Health, it is my distinct pleasure to appear before you to
present an overview of the issues and concerns in addressing asthma in the US Virgin Islands. A presentation of
these issues can only take place with a true understanding of the unique environment in which these issues arise.
Therefore, I would like to create a virtual map for you that define the unique elements, which characterize the US
Virgin Islands.

       We are known as the "American Paradise" and are comprised of four major islands: St. Croix, St Thomas,
St. John, and Water Island. The location of the territories is in the Caribbean Sea at the eastern end of the Greater
Antilles. We are 1600 miles south, southeast of New York, 1100 miles southeast of Miami, and 100 miles southeast
of San Juan.

       The largest island, St Croix, is mostly flat and has a history of agricultural development It now houses two
large industrial plants, Hess Oil Refinery, the largest oil refinery in the western hemisphere, and Vialco, an aluminum
processing plant.

       Forty miles due north is St. Thomas, a 32-square-mile island characterized by rugged mountains.  St Thomas
is world renowned for its magnificent natural harbor at Charlotte Amalie, and it is a major cruise ship destination.

       A few miles east of St. Thomas is St. John, covering 18 square miles. More that half of the  island is a
national park, which has served to preserve much of the island's natural beauty.

       The newest Virgin Island is "Water Island," transferred from the Department of the Interior in  1996.  The
size of the island is 2.5 miles long by 0.5-1 mile wide. Water Island is only separated from St. Thomas by half a mile.

       The political status of the US Virgin Islands is that of an unincorporated territory. We elect a governor, a 15-
member legislature,  and a delegate to Congress.

       Our population has grown from 25,000 in 1960 to 109,677 in 1995. We have a rich mixture of cultures. The
natural Caribbean heritage, heavily influenced by American and Danish values, is blended with the African base and
a large Hispanic presence, particularly hi St. Croix, as well as a smaller French influence in St. Thomas. The 1995
Virgin Island population survey estimated the racial composition as 76.7% black, 10.4% white, and 12.9%  as other
races.

       The health care delivery system also has unique features. There are two government-owned community
hospitals, one on each island.  We are primarily a fee-fbr-service--based system.  There are no HMOs.  The
Medicaid program operates under a cap so there is no freedom of choice for Medicaid patients.
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        While protected from the transitions and reforms that have taken place in the mainland United States, the
territory, especially its youth, has been affected by the public health challenge of the increasing incidence of asthma.
We have attributed this increase to a number of factors including an increase in industrial pollutants, an increase in
occupational allergens, and an increase in airborne allergens. In addition, the Virgin Islands experiences an increase
in asthma prevalence during the hurricane season, due to large dust particles from the Sahara Desert and to increases
in both environmental and emotional stress.

        By virtue of our location in the Caribbean Sea, we are exposed to the hurricanes and tropical storms that
develop off the coast of Africa. In the past decade alone, we have experienced four major hurricanes—Hugo,
Marilyn, Georges, and Lenny. The physical damage caused by these hurricanes has affected the infrastructure of
the Virgin Islands, hitting buildings, schools, and work environments, as well as increasing the risk of poor indoor air
quality.

        One factor that has a positive impact on the prevalence of asthma in the Virgin Islands is the low incidence
of tobacco use among residents. Studies, such as the Behavioral Risk Factor Surveillance System, have documented
that the percentage of persons who smoke cigarettes in the Virgin Islands is among the lowest in the nation. The
1994 Virgin Islands Behavioral Risk Factor Surveillance System reported that only 6% of respondent's age 18 and
older was current smokers. The Youth Risk Behavior Survey reported use as consistently low as well. In 1993, only
3% of youngsters indicated that they had smoked cigarettes regularly.

CURRENT INFORMATION ON ASTHMA
        Several sources of information exist to provide data on the extent of this disease. The Department of
Health's Bureau of Health Statistics has the capacity to aggregate deaths due to asthma based on age and island of
residence, and therefore the capacity to establish mortality trends over time. In the Virgin Islands, "other respiratory
illness" is identified as the tenth leading cause of death.

        The second source of data is the hospital's data system. Data are available by age, sex, length of hospital
stay, and average cost of visit  The pediatric ward generates monthly reports identifying the total number of
admissions due to asthma, and also indicates transfers off island, admission, and discharge records. Data collected
from the Governor Juan F. Luis Hospital show that asthma is a leading admission diagnosis along with other diseases
such as sickle cell disease and acute gastroenteritis.

        The third source of information is the Maternal and Child Health and Children with Special Health Care
Needs Program, which conducts surveys of the special  needs population to determine the prevalence of disease
within the sample population. The 1994 Needs Assessment Survey interviewed 696 families and found, for those
cases where a diagnosis was reported, that asthma was the number one leading diagnosis (11%) on St. Croix
(N=273) and the third leading diagnosis (8.4%) on St. Thomas (N=261).

ASTHMA HEALTH SERVICES AND PREVENTION ACTIVITIES
        There is a collective effort in the Virgin Islands to serve children and adults with asthma. Primary care
clinics are offered at the MCH & CSHCN Clinics, at 330-funded Community Health Centers, and at locally operated
community clinics. Additionally, the MCH & CSHCN Program offers a monthly pulmonology clinic, and allergists
conduct an allergy clinic on St. Thomas. A school nurse who refers school-aged children to one of the appropriate
health facilities conducts school health services. The Department of Health distributes material such as "Partners in
Asthma Care," published by the National Institutes of Health, for nurses, and "Teach Your Patients about Asthma,"
also published by the National Institutes of Health, for physicians.  A weekly asthma education class is offered at the
Governor San Juan F. Luis Hospital on St. Croix.

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        The community is also mobilizing to address asthma among children, adolescents, and adults. The American
Lung Association is active in leading this community-based effort to provide asthma prevention education. The
American Lung Association's "School Open Airways," which reaches students from kindergarten to sixth grade,
provides a series of classes to instruct about what asthma is, warning signs, how to use a peak flow meter, and
proper use of asthma medication. The American Lung Association also sponsors an annual "Asthma Camp" for
youngsters six to twelve years old in order to provide educational information for patients and providers. Translation
services are available for non-English speaking populations.

OUTDOOR AND ENVIRONMENTAL TRIGGERS
        The American Lung Association, in partnership with the Virgin Island's Environmental Protection Agency,
received funding to address indoor air quality and maintenance issues. This indoor air quality program assessed the
environment and made recommendations to improve the quality of air, i.e., maintenance of air conditioning filters,
nature of air conditioning units, etc.

GOALS AND OBJECTIVES
        The overall goal of a project to enhance asthma prevention and health services is to reduce the morbidity,
mortality, and burden of asthma among all ages in the US Virgin Islands. Specific objectives are to address the need
to:

           •   Collect data to further examine the causes of asthma in the Territory
           •   Improve compliance with preventative medical management
           «   Reduce the frequency of emergency room visits and hospitalizations
           •   Increase access to specialty services
           •   Increase rates of vaccination against influenza and pneumococcus
           •   Strengthen interagency and community-based linkages with schools, with parents, and with housing,
               park, and recreation agencies
           •   Develop a Territory-wide plan to identify and follow patients and families with asthma.
ACCESS
        There are several public health programs that promote access to quality, comprehensive health care including
asthma diagnosis, treatment, and management The Maternal and Child Health and Children with Special Health
Care Needs Program is the lead agency for children and adolescents up to 21 years of age.

PUBLIC AND PRIVATE PARTNERSHIPS
        There  is collaboration and  cooperation among the following agencies: Department of Education,
Environmental Protection Agency, Governor Juan F. Luis Hospital and Medical Center, Roy L. Schneider Hospital,
and the American Lung Association.

        The Virgin Islands Alliance for Primary Care is the active community coalition organized to engage the
community in identifying and prioritizing the needs of the community. This Alliance is also empowered to address
those needs. It is comprised of government departments, public health agencies, religious organizations, parent
support groups, and business sector representatives.

        We support further collaboration with target groups, such as the American Association of Retired Persons
and Mothers with Asthmatic Children, as well as with housing organizations, to address asthma from a community-
based perspective.
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RECOMMENDATIONS
       Tlie Virgin Islands delegation has drafted the following recommendations:
           •  Establish a comprehensive program that would further support efforts at the statewide level and that
              would provide resources for nursing and medical personnel, training, and continuing medical
              education.
           •  Support the development and promulgation of policies that provide access to medication and
              appropriate equipment
           •  Distribute successful models and best practices of community-based health education.

CONCLUSION
       I would Eke to take this time to commend the leadership of the US Department of Health and Human
Services, Health Resources and Services Administration, and all Region n Asthma Summit organizers for having the
vision to place this disease on the forefront of the public health agenda. Asthma is an issue that is a priority for many
communities, and the efforts made here today will have a meaningful and long-lasting impact on improving the health
of the nation.
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CARMEN FELICIANO BE MELECIO, MD, MPH
Secretary, Department of Health
Commonwealth of Puerto Rico
                    we are...  (Puefft© Rt
          " The smallest of the Greater Antilles (WO
           x 35 square miles),

         a One of the two largest '(Hispanic)
           minority group in U.S, (~ 3,9 millions
           living in P.R.),

         a Per capita income ~ $8,5QO/yr.
         3 Asthma mortality in children Is three
           times as compared to U.S.

         a Asthma prevalence is high (~4O %).
                                  r
                                  e.i. hospitalization rates)
             70 -,


             60 -


             50 -
           a
           o.
           » 20 -|
           a
           C£.
             10 J
Asthma
Rico and US
 All Ages 0 to
                                          Rate
                                            981
                                            65
                  10 in 11 n u  n  u
         "-PRX1I.SC IS

     Source State Depirlment of Health
                             3QJ 38J O.I 0,6
     Note: 1, Preliminary data for 1996*1998

     Center morulit>'rata were «IJu««i ""'"B ">« Direct method with the US census of 1940 provided by the National Health Statistics



                                            Manuscript in preparation
                                36

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  Asthma Prevention Activities
  in P.R,
      Collection since 199O
   • Asthma was identified as the most prevalent
    chronic condition in children and cause for
    hospitalization,

Pub lie Policy
   m Tabacco smoke -1993
   m Breast feeding -1998

MCH performance measures
   « State performance measure #7 (mortality)
   n Core health status indicator # 1
    (Hospitalization)
  Asthma Prevention Activities
  in P.R-
 Environmental studies

    .EPA study in Catano Basin -1996
    •Studies addressing indoor triggers.

 other activities

    m Asthma prevalence m public schools in Bayamon -1995

    ^Distribution of health care: resources and cost in the
    treatment of asthma — GlaxoWellcome —1996

    ^Prevalence, utilization and cost profile of insured
    asthma patients (O-17 years / old). - Triple C, Inc.
                     37

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 Obtained commitment to change care=
 Developed a coalition against asthma,,
 Define the opportunity for improvement.
 Set improvement goals and outcome.
 Began to characterized the process of
 asthma care,.
 Began an intervention cycle-

                    The Asthma Coalition of Puerto Rico
      State
    UPR and Ponce
   Department of
   Health / MCH
     Branch

Pharmaceutical
 Companies

 Puerto Health
   Insurance
 Administration

       Health
      Insurance
     Companies
     Schools of
      Medicine
The Asthma^
 CoalStSora of
    -  Programa
       Pediatrico
    Pulmonar de San
       Juan, CSP
Cardiovascular
  Center of
 PR/Pediatric
  Hospital
   PR Lung
  Association"
 Community,
Hospitals and
 Physicians
                     38

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     Asthma Prevention Activities
     in P.R.
  mService and Education
        .Education of the child and ifs family in self-
        management. — Coalition Against Asthma
        •Education to Primary Care Physician.
        .Provide at no cost special devices to asthmatic
        children.
        •Provide access to PCP and anti-asthmatic
        medications.
   •The Asthma Project for Children in Puerto Rico
        • Collaborative, interdisciplinary model
        • Began on August, 1999
Asthma Educational Program to
Children and their Families
 Los Colores del Asma"
       \\
Summary
   . Started Aug 199
   . 10 Health
    Educators
   • 8 Physicians an
    Residents
   • Over 100 Patient!
    Family Education
                        39

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Puerto  Rico Asthma Coaiition  Program  and Initiatives
                                                                                  .Long-bsm'bire" "
            .School-based asthma
            duration
            •Parental care focus on
            smoking prevenbon
•Case-identification
•Self-management



•Psychological evaluation
•Anticipatory guidance
•Child counseling
                   •Chrome disorder
                   management
                   •Self-management
                   programs
                   .Medications
                   managements
                   •Respiratory treatments /
                   devices
                   .Emergency medical
                   services
                   •Psychological counseling
                   •Child quality of life
•Acute hospital /
 intensive care
•Red alert
 program for
•Home visiting far

 education
•Case
 management
•School-based
 clinics / services
•Peer support
 groups
Family Focus
            •SmoicnG. prevention
            •Stress reduction

            •Pa renting sJoHs and
            chronic disease
            •Media education
•Parental / Family
education
•Anticipatory guidance
«Fam2y counseling
                                                 •Smoking cessation
                   •Treatments for family

                   •Farnay/Caregivers
                   quality of life
                                                                                  •Family Oierapy
                                                                                  •Psychiatric
                                                                                   rehabi Ration
Focus  .
             abatement programs:
             Dust-mites, roach
            •Air pollution policy
            •Pnysidans and Allied
             health care personnel
             education
            •University / community
•Practice guidance and
 quality measurements
 for providers
•Tracking and surveillance
•Access to care
•Hot asthma telephone
 Hne/webpage
                   •Office-based quality
                    improvement system
                   •Tracking and
                    surveillance
             programs
            •Community partnerships
            •Collaborations
•Hospital-based
 guaeBnes, quality
 measurements
 and improvement
•Minimal
 requirements^ for
 emergency roocn
 setting
•Tradang and
 surveillance
                                                                                  •School-based
                                                                                   policy
                                                     management

                                                    •Cost analysts
                                                     programs
                                                      References: Ajtboa'l Impact on Sedety: K. Wths W); 2000
  sai -JK.
                 Puerto Rico Asthma Coalition Project
                       Hospital Admission for Asthma
                           Rate  per 1,000 Population
                                                                                    N= 456,029

                                                                                    N = 570,106

                                                                                    N = 641,695
                      0-4     5-9    10-14   15-19   Total

                                 Age Range (yr)
      Source: ASES / State Department of Health

      Compiled Reports from Health Insurance Companies Claims Data in Puerto Rico
                                                 40

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       Puerto Rico Asthma Coalition Project
               Office Visits for. Asthma
              Rate per 1,000 Population
                                                   N ="456,029

                                                   N = 570,106

                                                   N = 641,695
            0-4    5-9   10-14  15-19
                 .   Age Range (yr)
                                   Total
Source: ASES / State Department of Health
Compiled Reports from Health Insurance Companies Claims Data in Puerto Rico
        Puerto Rico Asthma Coalition Project
         Emergency Room Visits for Asthma
              Rate per 1,000 Population
                                                    N = 456,029

                                                    N = 570,106

                                                    N = 641,695
               0-4   5-9  10-14  15-19 Total

                      Age Range (yr)


Source: ASES / State Department of Health
Compiled Reports from Health Insurance Companies Claims Data in Puerto Rico
                            41

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       Puerto Rico Asthma Coalition Project
   Regional Emergency Room Visits for Asthma
        Rate per 1,000 Population in 1999
Source: ASES / State Department of Health
Compiled Reports from Health Insurance Companies Claims Data in Puerto Rico
        Puerto Rico Asthma Coalition Project
      Regional Hospital Admissions for Asthma
         Rate per 1,000 Population in 1999
 Source: ASES / State Department of Health

 Compiled Reports from Health Insurance Companies Claims Data in Puerto Rico
                          42

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     Puerto Rico Asthma Coalition Project
       Regional Office Visits for Asthma
       Rate per 1,000 Population in 1999
                    0 10-14  M 15-19
Source: ASES / State Department of Health

Compiled Reports from Health Insurance Companies Claims Data in Puerto Rico
   Puerto Rico Recommendations
   eeds for Development of Asthma Projects in P.R.
  Collaboration of Federal Government and
  the private sector to improve surveillance
  andtracking.
  Develop an intervention program that
  support projects aimed at decreasing
    •__ f^    *   ^ f m mm~      m     —_  **_»_ *	 fSi
  asthma morbidity and mortality in Puerto
  Ricans.
  Promote activities toward reducing
  exposure to allergens and irritants and
  improving indoor and outdoor air quality.
  Sponsor the development of an Asthma
  Study Group Of Puerto RiCO (The Coalition
  Against Asthma in Puerto Rico).
                   43

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EPIDEMIOLOGY AND SURVEILLANCE ON ASTHMA IN REGION II
JEANNE MOORMAN, MS
Epidemiologist, Air Pollution and Respiratory Health Branch,
Centers for Disease Control and Prevention

        The objectives of this presentation are to:
        1.  Summarize the availability and utilization of existing data
        2.  Compare trends in EPA Region II areas to US trends
        3.  Suggest sources of additional data
        4.  Outline federal surveillance plans
        A number of sources of surveillance data are available on asthma (Table 1). Compared with data collected
for research purposes, surveillance data are usually less detailed, are regularly collected and analyzed, and are
routinely reported. Sources of surveillance data for asthma include mortality, incidence, prevalence, hospitalization,
and emergency department and provider billing (Medicare, Medicaid, and private insurance) data. National data from
each of these sources are available. Data are not as available for smaller geopolitical units.

        Asthma mortality data are available for US counties and territories. However, because asthma deaths are
relatively rare, death rates will be unstable for most areas with populations below 1 million. Li Region II, New York
City and Puerto Rico each have higher asthma death rates than does the United States (Table 2).
Table  1. Sources of Surveillance Data
Table 2. Asthma Mortality Rates by Area
        Incidence data for asthma are not currently available from a systematic surveillance system.  Registries
designed to provide incidence information are expensive and time consuming. However, incidence rates could be
calculated by developing algorithms using prevalence, mortality, and survival/cure rates. The results of these types of
analyses vary because the prevalence figures vary considerably from year to year. Survey data from questions on
age at first diagnosis of asthma or on years since first diagnosis could also provide estimates of incidence.

        Asthma prevalence data for the United States have been available from the National Health Interview
Survey since 1979. The redesign of that survey hi 1996-1997 resulted hi the temporary loss of an annual prevalence
figure. Beginning in 2001, the problem will be corrected; however, figures will not be exactly comparable with those
from before 1997 because of wording changes in the questions used and methodological changes  hi the survey
design. Prevalence data for adults for all states and territories will be available from the Behavioral Risk Factor
Surveillance System (BRFSS) beginning in 2000. hi 2001, additional questions on asthma history and childhood
                                                44

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prevalence will be available for states that choose to use them. During 1996 — 2000, a few states included asthma
questions on their BRFSS questionnaire (Table 3).                                   '
             BRFSS - Region 2
         NY-1996,1997,1999
         - 5 questions (I9»6-I997)
         — 8 questions— including module (1999)
           7% current prevalence (1996-1997)
           Minority Health Survey (1997)
         Puerto Rico- 1999,2000
         - 2 question asthma module (1999)
         — 2 questions in core (2UUO)
           5 asthma questions on children <14 (2000)
                                                       Asthma Prevalence Rates by Age:
Table 3. BRFSS for Region 2
Table 4. Asthma Prevalence Rates by Age in U.S.
        Asthma hospitalization figures are available for the United States beginning in 1965 from the National
Hospital Discharge Survey ( Table 5). Hospitalization data are available for analysis from each of the four areas in
Region IE (Table 7). However, the data for Puerto Rico include only those covered by the government managed-
care system (1.7 million of the 3.9 million population). Until prevalence data are available for states, interpreting
hospitalization figures is difficult. Higher hospitalization rates in an area may simply reflect higher prevalence.
Table 5. Asthma Hospitalization Rates by Age in US
          Table 6. Asthma Hospitalization Rates in
                   Region 2
        The National Hospital Ambulatory Medical Care Survey has collected information on visits to emergency
departments in the United States since 1992. The National Ambulatory Medical Care Survey has collected similar
information on visits to physicians' offices periodically since 1975.  In Region n, only the Virgin Islands has
comprehensive data from emergency departments (Table 7). As with hospitalization rates, data from emergency
departments and from office visits require prevalence information for proper interpretation.
                                                  45

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                  Emergency Visits
             National Hospital Ambulatory Medical
             Care Survey
             - 1992 on    ;
             - 2S.I)00-4S.(inO visits
             Region 2
             - NY, No system      r
             - NY City, project in field;
             - NJ. No system;
             - Virgin Islands,; 1997-2000
             - Puerto  Rico. 1997-1999          riX
        Table 7. Emergency Visits in Region 2     Table 8. Asthma ER visit rates by age

        There are some innovative approaches to asthma. A number of projects use school systems to collect
information on asthma prevalence in children. A project in North Carolina has adapted the ISAAC instrument to a
video presentation. Analyses of pharmacy records for asthma medications are occasionally found, and the use of this
source could be expanded. Interest has increased in the use of data from managed-care systems and in billing data
from insurance providers.  Medicare and Medicaid data may provide additional sources of surveillance data for
asthma.  Sentinel surveillance projects in emergency departments are funded by the Robert  Wood Johnson
Foundation and the American Academy of Allergy Asthma and Immunology. A federal request for proposals for
emergency department sentinel surveillance should be released within a few months. The Multiple Airway Research
Collaboration currently includes 77 emergency departments in an asthma research program.

        Local area asthma data are needed to design and evaluate state action plans. National demographic trends in
asthma at the national level essentially are averages of data from smaller areas—each with considerable variability.
It is not sufficient to assume that trends seen in the national data  are mimicked at Hie state or local level.  Without
knowledge of local area prevalence, other sources of data on asthma cannot be properly interpreted.
                  Main boints;to remember
                Local area data is imperative
                  ii-...'	i .i..__	i-_ j	i.. -	._.(•*..
                  are not mirrored in smaller geographic areas
                 — Don't expect it in other data sources either

               1 Prevalence1 data are most important
                 - Can't interpret other data without them
                                                                   Contact information
 !
 !  Jeanne E. Moorman, Epidemiologist
Ai'r Pollution and Respiratory Health Branch
 National Center for Environmental Health
 I         404-639-2546
 Surveillance Summary on Asthma
                                                   46

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HEALTH DISPARITIES PANEL


SAM S. SHEKAR, MD5 MPH
Associate Administrator, Bureau of Health Professions,
Health Resources and Services Administration

       Dr. Sam Shaker served as the moderator for the Health Disparities Panel. Presenters for this panel included
Miriam Merced, MA; Jean G. Ford, MD; Dale Garee; and Mahmood Siddique, DO.
MIRIAM MERCED, MA
Director, Community Health Promotion Program,
Robert Wood Johnson University Hospital

                  Asthma's Impact on Minorities and Underserved Populations

PERSONAL STORY
       3:30 pjm. — The baby has a terrible cold and is very congested. He cannot breathe, "Ese muchacho suefia
como un gato." "Ay, Dios mio, let me make an appointment to have him seen by Dr. Thalia. Call Claudio please and
let him know."

       "This child is sick, he has a fever and is wheezing. Let me give you some medication for the wheezing. Call
       tomorrow to let us know how he is doing."

       That night nobody slept in the house.  "That medication really makes him sick. He is shaking. He is throwing
       up." Daddy is crying.

       6:00 am. — "Call the doctor, Claudio. Isnard has rolled up hi his bed. He can hardly speak. There are black
       circles under his eyes. He is having a very hard time breathing."

That afternoon, Isnard was admitted to the hospital with a pneumonia diagnosis. After 4 sleepless nights and a 10-
minute, 101-level crash course on asthma management, Isnard was sent home with a nebulizer, medications, and a
new diagnosis.

"Your son has asthma," said my family physician.  "No," said my husband and I. "Asthma? We do not have
asthma, and nobody in our family has asthma," we said. But wait a minute, my twin cousins in Puerto Rico had
fatiga when they were little.

Six months later, after being in and out of doctors' offices and emergency rooms, our doctor recommended that an
allergist see Isnard.

"Your son has allergies," said the specialist after poking him at least 100 times. Mold, grass, cat hair, dog hair, dust,
dust mites... the list went on and on.
                                              47

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"You need to make some changes at home in order to help this child." He made it sound like I was responsible for
my son's condition. What do you mean about getting rid of my 13-year-old cat? At this point, I have not come to
terms with my son's asthma diagnosis.
Plastic mattresses? Where do you get those? Take out the curtains, the rugs. These people must think I am rich—
those rugs are new. The house is going to get cold, and then he really is going to get sick.

Another six months down the road, and we had made the changes. He has not made a recent trip to the ER, and for
the time being, he is not wheezing.  Sound familiar?

This is the story of my son, Isnard, when he was diagnosed with asthma three and a half years ago at the age of two.
 This is also my story, and the story that has become too common to many parents and children in this Region.

As you heard before, my name is Miriam Merced, and I am the proud parent of a child with asthma. But I have an
additional hat  to wear here today.  I am also a health  educator and the Director of the RWJUH CHPP in New
Brunswick, New Jersey. The main goal of our program is to  improve the health status of the city's African
American and Latino communities by offerin&culturally and linguistically appropriate health promotion programsand
services. In this role, I come in contact with many people that have problems accessing health care for themselves
and for their families due to many financial, institutional, and cultural barriers.

FINANCIAL BARRIERS
        I would like to discuss a number of these barriers. Let's  begin with financial barriers and poverty. I have
been a witness to how the many years of economic, political, and  social neglect have affected the quality of life and
created many of the health problems encountered by the minority  members of the community where I have worked.
 Run-down neighborhoods and schools, as well as lower expectations for minority communities, have killed their
hopes and dreams and have created despair and sorrow in our neighborhoods.

        31% of Let's take New Jersey, for example. According to the NJ Center for Health Statistics, more than
Latinos and 22% of African Americans lacked health insurance coverage in 1998. Nationally, nearly half of all Latino
households have an annual income of below $25,000.  In addition, the Department of Health and Senior Services
reports that African Americans, Latinos, and other minorities accounted for approximately 59% of the asthma
hospitalizations in New Jersey in 1996. Access to care, medications, treatment, and education are key elements for
 successfully controlling asthma. Lack of financial resources or health insurance presents a dangerous situation for
those with asthma.

 INSTITUTIONAL BARRIERS
        Although minority communities face the lack of both financial resources and health insurance when
 accessing health care, they also confront a series of institutional barriers. It has been my experience over the years
 that many of our inner-city minority communities are overwhelmed with the struggles of their daily lives. When you
 add an additional dilemma to those struggles, such as the pressure of managing asthma with limited resources for
 themselves and their children, this easily becomes an additional stress factor in their lives. In addition, you can also
 add to this picture a health system that is complicated, fragmented, judgmental, and in many cases inflexible. Let us
 take the case of some of our newly arrived immigrants from Third World countries. They come to the US with little
 or no experience with a health care system.

        There is a very popular song from a famous singer, Juan Luis Guerra, from the Dominican Republic, which
 describes hi detail the struggles of poor people when attempting to access health care in this poor Caribbean country.
 The song says that doctors are always on strike, that there are no medical supplies or equipment, and that corruption
                                                48

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 is the law of the land.  Finally, the chorus explains that to obtain health care in this country, "es como pasar el
 Niagara en bicicleta:" "it is like trying to cross the Niagara Falls on a bicycle."

        This is the painful impression of a health care system that many of our immigrants bring to the United States.
 There are many health institutions and health providers who are not sensitive to the struggles and conflicts faced by
 poor minority  communities. Many minorities have a real fear of the unknown, do not speak the language of their
 caregivers, or are daunted with fear of deportation. In addition, many work long hours, and this affects their abilities
 to seek medical care.

 CULTURAL DIFFERENCES AND HEALTH BELIEFS
        Another issue that becomes a barrier in accessing health care for minorities is their differences in health
 beliefs and culture. Many health care providers remain unaware of the extent to which some minority communities
 use non-traditional medicines, treatments, and home remedies. We merely have to turn on the television to one of the
 Spanish channels in order to observe the aggressive advertising campaign of "una de gato," shark cartilage, andherbs
 from around the world that cure all sorts of diseases and conditions.  Or we can take a visit to the neighborhood
 botanica,  and we  will see how busy these non-traditional pharmacies are.  They sell a variety of remedies and
 treatments for asthma, diabetes, and arthritis with herbs and products such as alcanfor (camphor), bruja (life plant),
 savila (aloe vera), Ipecacuana syrup, and others. They often also recommend a mixture of onions, aloe, honey, and
 watercress for your child's asthma problems.  Finally, patients themselves are the best source of information about
 the use of non-traditional medicine. Frequently, however, it is difficult for them to admit to their health provider that
 they are using these remedies because they might be intimidated by the health care system or afraid of being
 ridiculed.

        It is crucial for health care providers to understand the extent of the use of non-traditional medicine in
 minority communities in order to effectively treat patients.  One way that we have been able to address this issue in
 New Brunswick is by organizing trips to the local botanica for medical residents from the RWJ Medical School.
 During the visits, medical residents are exposed to a different health belief system, a system in which the body's
 physical health and its spiritual health are considered as one.  The medical residents also have the opportunity to
 share their experiences working with Latino patients with the botanica owners.

 LANGUAGE
        Another cultural difference faced by many minority communities is their inability to effectively communicate
 with their physicians due to language barriers.  It has been my experience while serving as a translator for many
 patients that people are more comfortable relating their health concerns effectively in their own language.

        In terms of health literature for certain minority groups, the information needs not only to be translated, but
 also customized for the particular targeted community.  For instance, in the Puerto Rican community, the word
 "fatiga" must be added when referring to asthma. Last year, I had the opportunity to co-chair the New Jersey
 Office of Minority Health Asthma Network. The role of this network was to develop a project aimed at increasing
 asthma awareness through culturally competent outreach initiatives, education, and training of community health
promoters in three target cities: Newark, Trenton, and New Brunswick.  One of the most intense and challenging
parts of this project was the identification of bilingual materials and the development of a bilingual resource directory
 for the three cities. In addition, the New Jersey Asthma Network unexpectedly confronted language issues in the
 City of Newark as we attempted to work with the Haitian community. We had to depend on the generosity of one
busy church pastor who could translate materials and workshops into Creole.
                                               49

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       In conclusion, we need to keep in mind that the translations of materials must be done by professionals and
that resources and funding need to be allocated for the translation services. We cannot continue to depend on well-
intentioned, non-trained bilingual volunteers to produce accurately translated bilingual materials.

RECOMMENDATIONS
       I would like to finish my presentation by giving you the following recommendations based on my experiences
as a parent, a health educator, and a community health advocate.
    •  To develop an aggressive asthma awareness campaign in minority communities targeting daycare centers,
       schools, churches, community-based organizations, athletic leagues, etc.
    •  To include key community residents, organizations, churches, and community healers or "curanderos" in the
       development and implementation of asthma education initiatives.
    •  To develop standards for cultural competency to ensure effective provider-patient interactions.
    •  To create partnerships and coalitions to address issues of improving the quality of life for underserved
       minority communities.
    •  To establish permanent and effective asthma educational and outreach programs that go beyond one-shot
       deals and move into long-term asthma community initiatives.
    •  To build strong networks of support mat can mobilize resources to assist our minority underserved families
       with asthma.
    •  To expand asthma education programs for minorities to include the development of empowerment skills for
       patients, parents, and the community at large.
JEANG. FORI>, MD
Director, Harlem Lung Center, Harlem Hospital Center

        Since the late 1970s, asthma morbidity and mortality have risen dramatically in the United States.  This
increase has impacted urban minority populations disproportionately, and New York City provides an example of this
disparity.  This city has the highest asthma mortality rate in the nation, and published reports point out significant
racial/ethnic and socioeconomic disparities, with poor Black and Hispanic populations at a disadvantage. Because of
concerns about impediments to those seeking asthma care in urban communities of color, we conducted cross-
sectional surveys of patients and primary care providers in Harlem, in order to characterize barriers to asthma care in
our community.

        Harlem is a predominantly minority population. In a survey of prevalent cases of asthma in Central Harlem,
we found that 13.9% of adults had been previously diagnosed with asthma, and that among those individuals, 14.4%
currently had asthma symptoms.  Nearly one half (48%) of individuals with asthma-like symptoms did not have a
diagnosis of asthma. Most likely, a few of these individuals have other conditions (e.g.,  chronic obstructive
pulmonary disease, congestive heart failure, etc.). These statistics indicate, nonetheless, that asthma may be
commonly undiagnosed in this community.

        In a study entitled "Reducing Emergency Asthma Care in Harlem" (REACH), a probability sample (N =
372) of Emergency Department (ED) users at Harlem Hospital responded to a survey on risk factors for ED use.
More than 70% of respondents had used the ED at least twice during the previous 12 months. Most (80%) fulfilled
the symptoms-based criteria for moderate or severe persistent asthma, according to the National Asthma Education
and Prevention Program (NAEPP) Guidelines, and 47% reported having a primary care provider.  However, 70%
reported that they rely on the  ED for their asthma care.  In a survey of asthma knowledge, the same group of
respondents scored high on the role of medications in asthma management (78%); the potential role of environmental

                                               50

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controls (78%); and facts about asthma (72%). Only 50% demonstrated proper technique for MDI use, and among
the rescue action proposed by the respondents in response to symptoms or signs of an asthma exacerbation, only
45% were consistent with NAEPP recommendations. In addition, the database revealed under-utilization of both
bronchodilators and corticosteroids prior to the ED visit, and 31% of respondents reported use of over-the-counter
medications for managing their asthma.                                          '

       Contrary to NAEPP Guidelines, more than 80% of the individuals who reported having a primary care
provider (PCP) did not contact their PCP during the evolution of the presenting asthma exacerbation. In order to
ascertain barriers to care from the perspective of the medical care provider, we conducted a survey of asthma care
providers for Harlem residents in the spring and summer of 1995. While providers (>80%) generally indicated that
they gave instructions to their patients on what to do "in case of a cold," most expected that their patients would not
call them prior to going to the ED.  Primary barriers to calling the provider during an exacerbation, prior to going to
the ED, were categorized as: system barriers (67%), including lack of physician availability; patient barriers (24%),
i.e., low threshold for an ED visit; and provider barriers (9%), i.e., de facto use of the ED for off-hours coverage.
We believe that the preferential reliance of patients on the ED for their care is conditioned by a primary care context
that facilitates such preferential use of the ED. In regard to the use of peak flow meters, we found that asthma care
providers underutilized these devices, underscoring mainly provider and system issues.

       We also conducted a survey of Harlem-based pharmacies in the summer of 1995.  At that time, we found
that 65% did not have peak flow meters and 49% did not have spacers in stock.

       Tie foregoing illustrates the complex of barriers that impede asthma care in an urban minority community.
The overall picture that we see in Central and West Harlem is: 1) a lack of connection between the ED and a setting
for continuity of care; 2) usually informed, but overburdened, primary care providers; 3) an inadequate infrastructure
for asthma diagnosis and management of asthma, including inadequate mechanisms for identifying prevalent asthma
cases in the community.

       The NAEPP Guidelines provide a standard of care for asthma.  In urban communities of color, this standard
is often not reflected in available asthma care settings. Initiatives to reduce disparities in health care utilization for
asthma must strive to meetthis standard. This cannot be achieved successfully, however, unless system barriers that
are prevalent in urban communities of color are addressed. Ultimately, the appropriate standard of care for asthma
will need to be institutionalized, including through local access to asthma-related services, at the appropriate levels of
complexity.
                                                51

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BALES. GAREE
President, American Lung Association of the Virgin Islands;
Program Manager, Comprehensive School Health Program,
Virgin Islands Department of Education

CHILDHOOD EXPERIENCES
       I was bom in the Bronx to my Virgin Islands mother, my father having died earlier that year of a car accident
in California.  So  when I am asked about my ethnic or racial background, I usually say I am an American West
Indian, gestated in California, incubated in West Virginia, and bom in New York.

       My great-grandfather had asthma, it skipped a generation, and then my brother, four cousins, and I had it. I
have two children, a daughter who is twenty and a son who is twelve. My daughter has asthma, and my son has
allergies, but not asthma as of yet.

       My earliest childhood memory relating to asthma was being taken to Puerto Rico at age three and given a
skin test on my back. I remember crying as I was held down and my mother trying to reassure me. I started allergy
shots fairly early, but I outgrew them. My next negative experience occurred when I was rejected for Air Force
ROTC because I said "yes" when the doctor asked that dreaded question at my ROTC physical, "Did you have
asthma?"

       However, my most negative experience occurred when I developed skin allergies to animals, particularly cats
and dogs. This occurred in the 60s, before they had developed desensitization treatment for them.  This was
especially painful, because I was thinking about becoming a veterinarian!

ADULT EXPERIENCES
       I moved to Chicago in 1970, and I developed allergies all over again. In Chicago, my doctor explained to me
that I was an atypical individual and that I would become allergic to these new-to-me substances. The Chicago
winter was not good to me, and I found myself using my inhaler every time I climbed the steps of the "el."  I think
this was one of the factors that caused me to come home, to the Virgin Islands.  After I developed problems again as
I got older and more  out of shape, my most serious management problem was remembering to take enough
medication with me on my business trips.   I have been on  at least three or four trips where I have run  out of
medication and had to buy over the counter inhalers. I was pleasantly surprised when I went on a conference trip
and one of my colleagues, a nurse, suggested that I go to a pharmacy and see if they could call home and verify my
prescriptions, which they did. This has become more and more of a concern of mine as one of my colleagues, a
previous president of the American Lung Association of the Virgin Islands, died of an asthma attack while attending
the American Lung Association national conference a couple of years ago.

PARENTAL EXPRIENCES
       My daughter, Jade, was about five years old when she started developing problems getting congested at
night. That is when I started learning about "SMUT' and other home environmental issues.  She and my son, Ward,
both developed allergies, and we were off to the weekly office visits. My daughter also developed a severe allergy to
bee stings and insect bites, and she had to go to preschool with an epi-pen. I can remember her anguished look when
she asked me, "Daddy, why is it so hard for me to breathe?" As a father, it was difficult for me to answer that
question. I remember my mother teling me that my great-grandfather would apologize for leaving his descendents
asthma, not money. My mother, incidentally, was one of the founders of the American Lung Association of the
Virgin Islands back in the 1950s. One of my early memories is of helping my mother send out the Christmas Seals
mailings. We  knew in our household that right after
Thanksgiving, we had to put out the Christmas Seals.  Therefore, I am a second-generation Lung Association
member.

                                              52

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 SCHOOLHEALTH
        I also wear another hat, that of Program Manager of the Comprehensive School Health Program for the
 Virgin Islands Department of Education. In this capacity, and through the American Lung Association, I was able to
 facilitate two workshops, one on Open Airways for Lungs and the other on Indoor Air Quality for Schools. We were
 able to train a substantial number of counselors and nurses, but unfortunately very few of them implemented the
 programs. In addition, we have run several asthma summer camps and hope to finance an asthma education
 program this summer using a school nurse as a health educator. We plan to use the Open Airways curriculum and to
 train the children in the use of the peak flow meter.
        At the Comprehensive School of Health, our future plans include extensive asthma education in the media
 and in the schools.  Since we live in the tropics, we have allergy season year round. We also have a health problem
 that we don't like to talk about too much—roaches. You would never see our insect population mentioned in any of
 our tourist brochures. In fact, I remember going on a camping trip in the St John National Park when I was a senior
 in high school and hearing a very angry parent complaining that no one had told him about the insect problem in the
 Virgin Islands. The frustrated parent had specifically inquired about the problem because his son was allergic to
 insect bites. This incident occurred after they had taken his son to a clinic.

        We need to develop culturally sensitive literature and media campaigns, not merely to transpose information
 from the mainland.  Our population is primarily comprised of Afro-Virgin Islanders and Afro-West Indians. We are
 also seeing a significant influx of people from the Dominican Republic and from Haiti. Each group has their own
 language and culture. I would like to see us use some of the money from the tobacco settlement for the development
 of culturally sensitive asthma management material.

        The Virgin Islands Department of Education is in the middle of adapting our version of the national health
 standards, and you can be confident that lung health will be part of the updated version.

        In addition to the school health curriculum, I believe  that community partnerships, similar to the HIV
 community planning groups, are key to providing a solution to the growing asthma problem in our community. This is
 the difficult part of the solution because most health departments, including our own, have problems with that. There
 are cultural differences between health and the community and between health and government agencies. To give
 you an example, I spent ten years working as a health clinic coordinator, more specifically in a substance abuse clinic,
 before I came to work in education. My clinic was part of the mental health division where we used the therapeutic
 community approach and where everyone was on a first name basis.  In education, on the other hand, everybody
 was doctor this and doctor that Needless to say, it took me a while to adjust, and if truth be told, I have never fully
 adjusted. On a side note, I have a friend, a recovering alcoholic, who helped us set up our substance abuse program.
 He told me that as a patient in a hospital-based recovery program, it could really cause problems if someone walked
 in and saw him without a nametag and a white coat My friend was also the only one to wear a tie and a long shirt in
 the entire mental health center.
        Finally, while discussing asthma with a school nurse, who herself is a mother of an asthmatic, we decided
that a serious attempt is going to have to be made to involve the family in asthma education. Partnerships are going
to have to be made with community organizations, such as with the American Lung Association, with the health
department, with the schools, both private and public, and with social services to provide a coordinated,
comprehensive approach to asthma education, prevention, and treatment
                                               53

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MAHMOOD I. SIBDIQUE, DO
Assistant Professor of Medicine; Director of Asthma Program,
Division of Pulmonary and Critical Care, UMDNJ

                                 Disparities in Asthma Morbidity:
                An Integrated Approach to Asthma Care at a Neighborhood Clinic

       During the past two decades, asthma morbidity and mortality have shown significant increases and are
disproportionately high for inner-city minority and impoverished groups (1).  The overall annual age-adjusted
prevalence of self-reported asthma increased by 42% in the decade of the 1980s, and this rate has almost doubled in
children 6 to 11 years of age (2).  Asthma affects approximately 14 to 15 million individuals, including 4.8 million
children less than 18 years of age, making asthma one of the most common chronic childhood illnesses.  In 1993,
asthma accounted for approximately 200,000 hospitalizations and 340 deaths among persons less than 25 years of
age, and asthma-related mortality and hospitalization rates continue to increase in this age group (3). The annual age-
specific asthma death rate increased 118% from 1980 to 1993, with the highest rates occurring in African Americans
aged 15-24 years (3).

       The rates of adverse effects from asthma disproportionately affect African Americans of low socioeconomic
status residing in urban areas (4-7). Death rates from asthma in children 5-14 years old doubled from 1980 to 1993,
and in 1993 alone, African American children in this age group experienced four times the rate of mortality from
asthma than their Caucasian counterparts. In children aged 0-24 years, African Americans were 3.4 times more
likely than whites to be hospitalized for asthma (3).

       Other impoverished ethnic minority groups have also recently been recognized to have experienced excess
adverse outcomes from asthma (7). Hispanic Puerto Rican asthma morbidity, as represented by hospitalization rates,
is negatively correlated with economic status and is approximately five times greater than that of whites in urban
New York City, with death rates in this same community being three times higher than for non-Hispanic whites. The
NCICAS study found Latino and African American children residing in Chicago and New York City to have
different patterns but equally high degrees of asthma morbidity, and Puerto Rican children have been reported to
have the highest cumulative prevalence of asthma of any ethnic group (7).

       The economic cost of asthma on patients and society is substantial and was estimated at $6.2 billion in 1990
(8). The costs associated with hospitalization, emergency department services, and asthma deaths account for most
of this sum. All three of these cost categories have been found to be in excess in the very segment of the population
suffering disproportionately from this disease—the ethnic, urban poor.

       In an attempt to decrease the burden of this illness, the National Heart, Lung, and Blood Institute (NHLBI),
through the National Asthma Education and Prevention Program, has recognized the need for relevant asthma
education programs, improvements in quality of and access to ambulatory health care, and enhancement of patient
self-management skills (9).  The current NHLBI guidelines for asthma management emphasize the importance of
building partnerships with patients and approaching asthma as a chronic disease (10). Concerns over sub-optimal
management of children with asthma in high-risk populations have prompted the development of models of care that
are targeted to their unique  needs. The NHLBI further recommends personalized educational strategies and
emphasizes the importance of psychosocial support to effect behavior change hi high-risk asthmatics and their care
givers (11).

       Many of these educational efforts, for both the adult andpediatric populations, have resulted in decreases in
hospitalization and readmission rates for asthma, emergency care visits, number and length of attacks, symptom days,
physical activity  limitation, lung function impairment, time lost from work or school, oral corticosteroid requirements,

                                               54

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and financial burdens of asthma on health care delivery organizations (12-17). These benefits have generally
occurred simultaneously with enhancement of effective self-management behaviors and patients' sense of control
over their disease. Despite these apparently encouraging data and the fact that the National Asthma Education and
Prevention Program (NAEPP) has published standardized guidelines for the diagnosis and management of asthma for
over nine years, asthma morbidity and mortality continue to increase (1-3). Additionally, evidence suggests that the
concepts put forth in these above guidelines have not been integrated into the practices of the community-based
physicians (18). Persistent underutilization of preventative inhaled anti-inflarnmatories, over-reliance on short-acting
bronchodilators, and lack of patient ability to properly utilize metered-dose inhalers have been reported (18).
Moreover, a meta-analysis of articles published for over 20 years concerning the effects of self-management
teaching programs  on pediatric asthma morbidity (1970-1991) has concluded that education alone has proved
inadequate to reduce asthma symptoms or health care utilization (19).

        We developed an integrated,  NHLBI guidelines-directed asthma education and medical management
program in partnership with the primary care physicians  at a community-based health care delivery site serving
predominantly African Americans and Puerto Rican Hispanics at the Eric B. Chandler Health Center, New
Brunswick, New Jersey.

        The objective of the study was to  determine  the effect of an  idealized guidelines-directed clinical
management and educational program for high risk, socioeconomically distressed urban minority patients on asthma
morbidity and self-management knowledge outcomes.

        Patients were referred to the asthma diagnosis, management, and education program by then- primary care
physicians and were seen at their neighborhood ambulatory clinics. Once seen, there was immediate incorporation of
a patient's evaluation and plans into the primary physician's outpatient records.  All aspects of the program were
developed according to the NHLBI Asthma Diagnosis and Management Guidelines (10).

        The program involved objective confirmation of the diagnosis of asthma. Asthma symptoms, lung function,
and patients' comprehension of the illness and specific management program were assessed and taught at each visit.
 Written educational and management materials were discussed with and given to the patient. The overall teaching
program emphasized home monitoring, environmental modifications, and comprehension of and ability to use
pharmacological therapy.

        Over a 12-month period, 56 patients underwent2 or more evaluations. The mean number of encounters was
4.0 ± 0.4 with a mean length of follow-up of 5.0 ± 0.5 months.  Seventy percent were women, 40% Puerto Rican
Hispanics, 47% African Americans, and 10% Caucasians. The mean age was  39 years, with a range of 7 to 72
years. Upon entry, 87% of the patients had moderate to severe persistent asthma symptoms and 67% had moderate
to severe persistent lung function impairment; only 6 patients owned a peak expiratory flow rate meter; and none had
written asthma action plans. Ninety percent utilized short-acting p-agonists > 2 canisters per month, and 69% utilized
inhaled  steroids.  At their latest clinic visit, 100% were  on inhaled anti-infiammatories.  Metered dose inhaler
competency improved from 51 ± 5 to 79 ± 4 % correct steps (N=56, P<.0001). Improvements in lung function,
symptom class, subjective and objective measures of asthma control occurred (P<.0001), such that 60% had mild
persistent asthma symptoms and pre-bronchodilator FEVi > 80% predicted, hi addition, there was a significant
reduction in ED visits (34 ED visits by 17 patients in the six months prior to entry versus 5 ED visits by 3 patients
post-entry; 14 hospitalizations in 12 patients in the 6 months prior to entry versus 1 hospitalization by one patient post-
entry). These data demonstrate that in an idealized setting with minimal barriers to access to health care, a highly
integrated guidelines-directed asthma management program can result in the improvement of multiple indices of
asthma morbidity and enhance asthma self-management knowledge outcomes hi high risk, inner-city patients.
                                               55

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REFERENCES

1.   Mannino DM, Homa DM, Pertowski CA, Ashizawa A, Nixon LL, Johnson CA, Ball LB.  Surveillance for
    asthma—United States, 1960-1995. MMWR CDC Surveffl Summ 47:1-27,1998.

2.   Current Trends. Asthma—United States, 1982-1992. MMWR 43:952-955,1995.

3.   Asthma mortality and hospitalization among children and young adults—United States, 1980-1993. MMWR
    45:350-353,1996.

4.   Weiss KB, and Wagener DK. Changing patterns of asthma mortality.       JAMA 264:1683-1687,1990.

5.   Grain EF, Weiss KB, Bijur PE, Hersh M, Westbrook L, Stein, RE. An estimate of the prevalence of asthma and
    wheezing among inner-city children. Pediatrics 94:356-62,1994.

6.   Lang DM, Polansky M. Patterns of asthma mortality in Philadelphia from 1969 to 1991. NEngUMed 331:1542-
    6,1994.

7.   Kattan M, Mitchell H, Eggleston P, Gergen P, Grain E, Redline S, Weiss K, Evans R, Kaslow R, Kercsmar C,
    Leickly F, Malveaux F, Wedner HJ. Characteristics of inner-city children with asthma: The National Cooperative
    Inner-City Asthma Study. Pediatric Pulmonology 24:253-262,1997.

8.   Weiss KB, Gergen PJ, and Hodgson TA. An economic evaluation of asthma in the United States. NEngUMed
    326:862-866,1992.

9.   National Heart, Lung, and Blood Institute National Asthma Education Program Expert Panel Report. Guidelines
    for the Diagnosis and Management of Asthma. Publication No. 91-3042, August 1991.

10. National Asthma Education and Prevention Program. Guidelines for the diagnosis and management of asthma.
    U.S. Department of Health and Human Services. Nffl Publication No. 97-4051A. Washington, D.C., May 1997.

11. Asthma Management in Minority Children: Practical Insights for Clinicians, Researchers, and Public Health
    Planners. National Institutes of Health, National Heart, Lung, and Blood Institute, NIH Publication No. 95-3675,
    November 1995.

12. Clark NM, Feldman CH, Evans D, Levison MJ, Wasilewski Y. and Mellins RB. The impact of health education
    on frequency and cost of health care use by low-income children with asthma. J Allergy Clin hnmunol 78:108-
    115,1986.

13. Hindi-Alexander MC. Asthma education programs: Their role in asthma morbidity and mortality. J Allergy Clin
    knmunol 80:492-494, 1987.

14. Evans D, Clark NM, Feldman CH, Rips J, Kaplan D, Levison MJ, Wasilewski Y, Leving B, and Mellins RB. A
    school health education program for children with asthma aged 8-11 years. Health Educ Q 14:267-279,1987.

15. Wissow LS, Warshow M, Box J, and Baker D. Case management and quality assurance to improve care of
    inner-city children with asthma. Am J Pis Child 142:748-752,1988.

 16. Mayo PH, Richman J, and Harris HW. Results of a program to reduce admissions for adult asthma. Annals of
    Intern Med 112:864-871,1990.
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17. Wilson SR, Scamagas P, German DF, Hughes GW, Lulla S, Coss S, Chardon L, Thomas RG, Starr-Schneidkraut
   N, Stancavage FB, Arsham GM. A controlled trial of two forms of self-management education for adults with
   asthma. Am J Med 94:564-576.1993.

18. Hartert TV, Windom HH, Peebles RS Jr., et al. Inadequate outpatient medical therapy in patients with asthma
   admitted to two urban hospitals. Am J Med 100:386-394,1996.

19. Bemard-Bonnin AC, Stachenko S, Benin D, Charette C, Rousseau E. Self-management teaching programs and
   morbidity of pediatric asthma: a meta-analysis. J Allergy Clin Immunol 95:34-41,1995.
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C03NEFERENCE QREECTIVES AND CHARGE

MARGARET TENG T.EF, MD
Director, Office of Data and Analysis, HRSA-Northeast Cluster

       I believe that my new position in Data Analysis is going to be really exciting—even this conference has
repeatedly demonstrated that, with asthma, the need for data and surveillance is clear. I'm looking forward to this
new position, and, of course, to continue to work with you in moving this asthma agenda for Region n forward. I
think you have heard from our expert and outstanding conference faculty what it is we need to focus on in terms of
combating the increases in the morbidity and mortality of asthma, which impact the population here in Region n on a
daily basis. So I want to welcome you on behalf of myself and Dr. Luder, who served as the Co-Director for this
summit. Dr. Luder is an Associate Professor of Pediatrics here at Mount Sinai, and she has been a strong ally and
support to us in many of our activities. She has been wonderful hi working with me to put together the agenda for the
summit, as well as in her commitment to what we are going to be doing after the summit. We will be putting together
published proceedings, which every one here will receive. We hope that the proceedings will serve you well as a
resource in terms of what you want to accomplish, as well as a tool to obtain feedback from your constituency groups
as you return to your states and local areas. By working together at the federal, state, and local level, we can work
to combat the morbidity and mortality of asthma, particularly for the minority populations that are disproportionately
affected by this chronic disease.

        Let me address why we at HRSA started looking at the issue of asthma. We started to focus on asthma
since 1997, when the National  Institutes of Health published their recommendations from the National Asthma
Education and Prevention Program, which contained updated guidelines for providers to use hi the diagnosis and
management of asthma, focused on reducing exposure to environmental risk factors, and identified proven methods
for teaching asthma self-management and prevention to patients.  At this point, in conjunction with Mount Sinai
Medical School, we sponsored a continuing medical education meeting here in this auditorium for over 600
participants on updating primary care providers on current diagnosis and management of asthma.

        In 1999, we looked at our data from HRSA grantees, both from the UDS data from the community health
centers and from the state Title V  MCH Programs. The data revealed that there was, indeed, an increase hi
prevalence of asthma, both  an increase hi the number of medical  encounters for asthma and an increase in
hospitalization rates for children with asthma.  This data was very consistent with what we were seeing at  the
national level.

        At the same time, we started to work collaboratively with our partners hi the EPA Region n office. The goal
was to really look at the recommendations from the President's Taskforce on Environmental Health Risks and Safety
Risks to Children. The two issues that we agreed to focus on were asthma and lead.

        We decided to identify and develop specific activities and action plans for Region II for FY1999-2000. There
were three specific activities that we targeted for ourselves. They were both realistic and targeted, and therefore we
were able to accomplish the implementation of these activities.
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        1) We conducted a telephone survey of key informants in the four jurisdiction's Departments of Health and
        also with the New York City Department of Health. The survey had three sections. We asked what data
        informants were collecting and what analysis they were doing, if any, of those data. We asked them what
        they were working on in terms of childhood asthma activities because, at that point, the focus was mainly on
        pediatric asthma.  We also asked what efforts they were making to combat childhood asthma and what
        suggestions they had for HRSA. With the help of a summer intern, Kathy O'Shea, a student of public health
        at SUNY Albany, we were able to complete that survey in the summer of 1999.  We really took some of
        those recommendations from the state to heart. One was to help them identify the best practices to promote
        collaboration between the various federal agencies that are funding asthma activities.  Another was to
        support them in their asthma action plans and activities.

        2) We went forward with our proposal to HRSA and to EPA, and we were fortunate to receive funding
        from HRSA, Dr. Sam Shekar, EPA-Region E, and to bring in Clinical Director Network, Inc., to fund pilot
        clinical and environmental intervention projects at four community health centers that serve minority and
        urban populations. The objective of these projects was to demonstrate how communities can develop and
        implement effective asthma education and management programs that are community-based with both
        clinical and environmental intervention components.

        3) We convened a Region n Asthma Summit in collaboration with other federal, state, community, and
        private partners to support state and local public health action and also to identify best practices for their
        asthma action plans.

        We put together a very large and active planning committee for this Region n Asthma Summit, and their
names and the agencies and organizations they work with are in your folder.  With their help, we were able to
identify speakers, agenda topics, and the four conference objectives:

        1) To update current knowledge on best practice models for asthma outreach, education, and clinical and
        environmental intervention programs.
        2) To provide information on state managed care and local HMO initiatives on asthma in Region II.
        3) To support state and local health initiatives to effectively address the disproportionate burden of asthma
        for minority populations.
        4) To support the development of state and regional asthma consortia.

        We have organized the agenda for the summit in order to provide participants with information on the
pertinent federal and state strategies and on the available epidemiology and surveillance data, as well as to hear from
the providers and families and from experts with outstanding asthma programs. We ask that you participate in the
state breakout sessions that you listen, participate, and engage with agency and community activists to work towards
the development of state-specific action plans. Prior to this summit, we asked the State Departments of Health and
the MCH and Children with Special Health Care Needs Directors to assist us in identifying the key state participants
from Medicaid, the State Child Health Insurance Plan, the CDC, environmental health groups, parents, and others to
work with them beforehand on putting together information on activities and strategies that they can share with you
during their sessions.
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       At the federal level, we are committed to specific responsibilities at this summit and afterwards. Staff from
participating federal agencies, including from EPA, from HCFA, and from the state-based teams that you heard
about from the HRSA Field Office here in New York, will serve as federal resource persons for the state sessions.
In addition, we  will be  meeting together after the summit to  compile a summary of the summit's key
recommendations and issues to submit to the Department of Health and Human Services and EPA for their
consideration. As I mentioned before, with the generous support from the Robert Wood Johnson Foundation, we will
also be publishing the proceedings from this summit for your use as a resource. In addition, we will be meeting with
the Foundation in order to share with them some of the activities and strategies that have been  developed, with
possible funding and support in mind.

       Finally, EPA and HRSA will support the provision of technicalassistance to the states, which will be linked to
the state plan based on priority ranking.  I will give more information on this tomorrow after the summary of the
conference provided by Maureen O'Neill, EPA.

       I firmly believe that by working together we can reach our common objectives of reducing the high, and truly
unacceptable, prevalence of asthma morbidity and mortality hi Region n and of providing better quality health
services and life for the population we serve.
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WORKSHOP A: PUBLIC AND COMMUNITY OUTREACH AND EDUCATION
                              CNM
Acting Chief, Resources and Clinical Services Branch;
Regional Clinical Coordinator, New York HRSA Field Office

       Ms. Holder-Mosley served as the moderator for Workshop A, Public and Community Outreach and
Education.  Presenters for this workshop included Kevin Thomas McNally, MBA; Evin H. Aksay; Philip J.
Landrigan, MD, MSc, DIH; and Marcia Pinkett-Heller, MPH.
KEVIN THOMAS MCNALLY, MBA
Program Manager, Child and Adolescent Health Program,
New Jersey Department of Health and Senior Services

                         New Jersey Minority Health Asthma Network

1 year project: August 1998 - July 1999
    •  Funded by USDHSS Region H, Office of Minority Health

Three target cities:
    •  Newark
    •  New Brunswick
    •  Trenton

Activities guided by an Advisory Committee, whose members included:
    •  medical professionals
    •  medical schools
    •  statewide health and environmental organizations
    •  anHMO
    •  community-based organizations from the target cities

Products:                                   '  •       >
    •  One-page asthma fact sheet—written to address specific concerns of minority communities.
    •  Asthma resource directory—printed in both English and Spanish. Includes both statewide resources and
       local resources for the three target cities.
    •  Training of community health promoters—18 people trained in the three target cities, in partnership with
       faith-based organizations.  Training curriculum and manual developed by a sub-committee of the
       Advisory Committee.

Final report and recommendations to Commissioner of Health and Senior Services in July 1999.
    Recommendations include:
    •  Formation of permanent asthma advisory committee to Department of Health and Senior Services
    •  Establishment of an "Asthma Report Card" for the State of New Jersey
    •  Expansion of the network of community-based asthma initiatives
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Additional information:
    •   Linda Holmes, Executive Director, Office of Minority Health,
       (609) 292-6962
       lholmes(5),doh.state.ni .us
    •   Resource Directory available at: http://ww\v.smte.ni.us/health/commiss/ornh/astfania/
    •   Fact Sheet available at: http://w^^\state.ni.us/heall3i/conimiss/omh/asthma/astfacts.pdf
PHILIP J. LANDRIGAN, MB
Chairman, Department of Community and Preventive Medicine,
Mount Sinai School of Medicine

                   Risk Assessment for Children and other Sensitive Populations

        Children form a unique subgroup within the population that requires special consideration in risk assessment
Children are not little adults.  Their tissues  and organs grow rapidly, developing and differentiating.  These
development processes create windows of great vulnerability to environmental toxicants. Furthermore, the exposure
patterns of children to environmental chemicals are very different from those of adults. Traditional risk assessment
has generally failed to consider the special exposures and unique susceptibilities of infants and children. Adoption of
a new child-centered agenda for research and risk assessment is necessary if disease in children of toxic
environmental  origin is  to  be identified, understood, controlled, and prevented.   This agenda needs to be
multidisciplinary.  Specific requirements within the agenda include: (1) exploration and quantification of unique
patterns of exposure for children;  (2) adoption of new, more sensitive approaches to testing chemicals that can
recognize the  consequences of exposure  during early development; (3) identification, through clinical and
epidemiological studies, of etiologic associations between environmental exposures andpediatric diseases; and (4)
elucidation, at the cellular and molecular levels, of the pathogenesis mechanisms ofpediatric environmental illness. In
the United States, an important start toward adoption of this new agenda has occurred since passage of the Food
Quality Protection Act I in 1996.  A Presidential Executive Order on Children's Health and  the Environment has
been promulgated.  This Order requires all federal agencies to make protecting the health of children against
environmental hazards a high priority. A new Office of Children's Health Protection has been established at the U.S.
Environmental Protection Agency.  Programs in children's environmental health have been created at the Centers for
Disease Control and Prevention, the Agency for Toxic Substances and Disease Registry, and the National Institute of
Environmental Health Sciences. A national network of eight new Children's Environmental  Health Research and
Disease  Prevention Centers  has  been formed.  These developments  will enhance research on  previously
understudied issues in the environmental health of children and will provide a scientific basis for child-centered risk
assessment.
REFERENCES
            1.
Reprinted from University in the Risk Assessment of Environmental and Occupational Hazards.
 Volume 895 of the Annals of the New York Academy of Sciences.
                                                62

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WORKSHOP B; CLOSING THE GAP BETWEEN SCIENCE AND PRACTICE

JAMES PATRICK KILEY, BS, MS, PHD
Director, Division of Lung Diseases, National Heart, Lung and
Blood Institute, National Institutes of Health

       Dr. James Kiley served as the moderator for Workshop B, Closing the Gap Between Science and Practice.
Presenters for this workshop included Leonard Bielory, MD; Carlos A. Camargo, MD, DrPH; Jonathan Tobin, PhD;
and Shawanda M. Patterson, MHA.

LEONARD BIELORY, MD
UMDNJ- Asthma & Allergy Research Center,
New Jersey Medical School

                                   The Asthma Report Card:
                 Asthma Disease Management from a Public Health Perspective

TOP REASONS FOR A PERFORMANCE MEASUREMENT SYSTEM
   It's the law. The Government Performance and Results Act of 1993 requires a strategic plan, and a method of
   measuring the performance of strategic initiatives.
•  A performance measurement system such as the Balanced Scorecard allows an agency to align its strategic
   activities to the strategic plan. It permits—often for the first time—real deployment and implementation of the
   strategy on a continuous basis. With it, an agency can get feedback needed to guide the planning efforts. Without
   it, an agency is 'flying blind.'
   Visibility provides accountability and incentives based on real data, not anecdotes and subjective judgments. This
   serves as reinforcement and provides the motivation that comes from competition.
   Measurement of process efficiency provides a rational basis for selecting what process improvements to make
   first
•  It allows an organization to identify best practices and expand then- usage elsewhere.
   It permits benchmarking of process performance against outside organizations.

ASTHMA IN AMERICA EXECUTIVE SUMMARY - JULY 1998
•  Asthma management is falling short of the goals established by the NIH/NHLBI. Indeed it would not be an
   exaggeration to say that asthma is out of control for many patients.
•  Although doctors report that they are following NIH guidelines and that patients are satisfied with their care, the
   level of care reported by patients does not meet current standards.
•  Despite this "satisfaction," disparities between patients' care and physicians used in the care of patients clearly
   exist as exemplified by the use of pulmonary function tests (PFT), peak flow meters (PFM), Asthma Action
   Plans (AAP), and inhaled corticosteroids (ICS). 70% of physicians used PFTs while 35% of patients had a PFT
   in the last year. 83% of physicians prescribed PFM while 62% of patients had heard of the device and 28%
   actually had one. 70% of physicians  prepared an AAP for use while 27% of patients actually had one. 90% of
   physicians thought ICS effective, with 75% prescribing it for mild asthma and 86% prescribing it for moderate
   asthma, while only 19% of patients actually took it in the past 4 weeks.

WAR ON ASTHMA
Essentially we must declare a "war" on asthma. We have excellent weapons (medications). We have soldiers

                                             63

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(physicians), some better trained than others (primary care vs. asthma specialists). We have officers to command
(health care organizations). However, we have not identified the leaders in the Joint Chiefs of Staff ("the Asthma
Coalition") nor the Commander in Chief (the director of an Asthma Center).
                                                                     THE ASTHMA COALITION
                                                       A community-based  model asthma coalition that
      The Patient-Centric Teamwork Care  N  coulcl be extended to a statewide concept is the
                                                       basis  of cooperation  and oversight It would
                                                       include:
                                                       •   A specialist co-champion - allergist
                                        PCP/Eli
                                        Physician
(conjointly boarded medicine & pediatrics)
UMDNJ- Asthma & Allergy Research
Center
A data analyst, implementation specialist,
administration representative
A primary care co-champion - family
practice —internist —pediatrician —ER worker
school nurses and coaches
a Head Start health coordinator
a case manager/home health worker
pharmacists/the pharmaceutical industry
legislative / public health subcommittees for
key   tasks   (provider  education,   patient
education, guidelines/care maps, access)
insurers
S   UMDN.J    >^  2
  Asthma & Allergy
  Research Center
         Lcgislaiive
          & Public^
          Health \
          Leadcrs ^
                 Tliel&KmaGoaSition
 The Asthma Coalition would develop a  consensus using NAEPP Guidelines; customize it with the physician
 ("Physician Directed - Physician Driven"); work to influence physician and family behavior; decrease interpractice
 variability; improve and compare outcomes.

 Disease Management
 Disease State Management is the care of a "population" that is rooted in evidence-based medicine; ongoing re-
 evaluation is mandatory. In regard to asthma, this continuous cycle of evaluation of treatment can be best described
 as "Asthma Quality Improvement."

 Asthma Report Card
 Any effort or initiative to improve asthma care will come to naught unless patients and their families can hold health
 plans and providers - the 'quarterbacks'  of any team effort - accountable for the outcome of asthma treatment
 New Jersey Asthma Report Card 2010 - A Modest Proposal
 A report should include the development of a registry; involvement of the legislature (local and state); establishment
 of  community  coalitions;  health  care   utilization  measurements  (ER  visits/hospitahzations/length  of
 stay/medications/OPD visits); quality of life measures; knowledge assessments; patient satisfaction, and others
 depending on the Asthma Coalition's needs.
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 CARLOS CAMARGO, MD, DRPH
 Director, MARC Coordinating Center, Massachusetts General Hospital

                        Emergency Department-Based Asthma Initiatives

        Over the past two decades, epidemiologists have documented a dramatic rise in asthma morbidity and
 mortality worldwide. The cause of this epidemic has become a major focus of investigation. While we await these
 important results, and even after, we will continue to need effective therapies for the treatment of persistent asthma,
 as well as the more acute symptoms of an asthma exacerbation.  Every year, acute asthma accounts for
 approximately 2 million ED visits and 500,000 hospitalizations in the US.

        The focus of my talk will be on the development and maintenance of the Multicenter Airway Research
 Collaboration (MARC), an international ED-based network that has allowed us to better understand the clinical
 epidemiology of emergency asthma (http://healthcare.partners.org/marc). MARC has provided important insights
 into the typical inner city ED patient with acute asthma. MARC data also allow us to compare how asthma care in
 Region 2 EDs compares with that provided in other North American EDs and, more generally, with the care
 recommended in the 1997 National Asthma Education and Prevention Program (NAEPP) guidelines. The network
 provides an infrastructure for future research on acute asthma, and for the widespread implementation of ED-based
 interventions such as the initiation of inhaled corticosteroids and formal asthma education programs. Thus, MARC is
 an ED-based initiative that is working hard to advance the clinical care of patients with acute asthma. I look forward
 to discussing the barriers we have encountered in creating MARC, the challenges before us, and hearing participants'
 ideas about how this network could work with other organizations to reduce the disproportionate asthma burden in
 minority populations.


 JONATHAN TOMN, PHD
 President & CEO, Clinical Directors Network
 and
 SHAWANDA M. PATTERSON, MHA
 Clinical Research Manager, Clinical Directors Network

   Evaluating Home/Environmental and Clinical Interventions for Asthma in Clinical Settings:
                       HRSA-Funded Community/Migrant Health Centers

       Asthma is a significant public health problem, one that disproportionately affects minorities, including African
Americans and Hispanics, and that requires an integrated approach in the clinical, family/home, and school settings.

       Community/Migrant Health Centers (C/MHCs) receive funds from the Health Resources and Services
Administration (HRSA) to provide comprehensive primary care and preventive services to low-income and minority
communities through a national network of 800 grantees. In 1997, these sites provided care at over 8000 delivery
sites to over 8 million patients in 25 million visits. Asthma is one  of the top five reasons for visits to C/MHCs.  In
1997, C/MHCs across the nation had a total of 137,218 users with a primary or secondary diagnosis of asthma and
served over 2.4 million children between the ages of 0 and 12.
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       Successful, comprehensive  asthma management requires a variety of interventions  at the clinical,
home/family, environmental, and school settings, and the primary care setting B an ideal venue from which to
implement a comprehensive intervention.

       Clinical Directors Network, Inc. (CDN), in collaboration with the Environmental Protection Agency (EPA)
and the HRSA-New York Field Office, is conducting a project entitled "Evaluating Home/Environmental and Clinical
Interventions for Asthma in Clinical Settings: HRSA-Funded Community/Migrant Health Centers." The CDN-EPA-
HRSA Asthma Project will test the feasibility and effectiveness of recruiting 200 children, aged 6 to 12 years, who
have mild persistent to severe persistent asthma and receive their primary medical care in four HRSA-funded
Community/Migrant Health Centers  serving low income and minority patients in Queens, New York (Joseph P.
Addabbo Health Center), Camden, NJ (CAMcare Health Corporation), Bridgeton, NJ (Community Health Care,
Inc.), and Philadelphia, PA (Delaware Valley Community Health ? Fairmount Health Center).

       Because the home can be both a toxic and a therapeutic environment for asthma, the goal of the CDN-EPA-
HRSA Asthma Project is to apply a set of interventions (home/envkonmental-based interventions and clinical-based
interventions) that can be applied to pediatric/adolescent children with asthma seen in the C/MHC setting. The
interventions are intended to:

       1. Decrease exposure to asthma -causing substances in the home
       2. Increase exposure to asthma-specific and general health promotion activities
       3. Leave behind an infrastructure to help Community Health Centers provide and coordinate asthma-related
           care in the home environment

       This project involves a translation of effective (evidence-based) research results into clinical practice. A few
components of research from the NIAID/NIEHS-funded Inner City Asthma Study and from the National Heart,
Lung, and Blood Institute (NHLBI) that have been shown to have some benefits will be bundled to meet the needs of
smaller, less resource-rich community practices.

       In order to estimate the independent effects of each category of intervention (home/environmental and
clinical), a two-by-two factorial controlled, factorial randomized clinical trial (RCT) will be conducted with four
treatment groups with two levels of randomization: a) at the clinical level (C+/C-), and b) at the individual level
(HE+/HE-). Prior to patient recruitment, participating health centers will be randomly assigned into 1 of 2 treatment
groups in the clinical-based intervention:
       1. Two health centers will be randomized to receive the clinical intervention (C+).
       2. Two health centers will be randomized to give patients high quality usual care (C-).

       Patients from the four participating community health centers will provide informed consent to be randomly
assigned into 1 of the 2 following home/environmental treatment groups:
       1. Experimental Group — Project-specific home/environmental asthma, home safety, and
          lead poisoning interventions (HE +).
       2. Control Group - No home/environmental asthma intervention (home safety and lead
          poisoning interventions only (HE -).
Each home/environmental treatment arm will have 100 patients for a total of 200 patients.
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        Following the end of the project, all patients randomized into the control group will be offered the opportunity
to receive the project-specific home/environmental asthma interventions after their last follow-ups are completed." In
addition, the 2 practices assigned not to receive the clinical intervention (C-) will be provided with the clinical
intervention after the last follow-ups are completed ("Late Group").

        Clinic-based interventions will include: provider education, patient medication review plus feedback, and
progressive muscle relaxation/stress-management training. Environmental interventions include: home assessments,
mattress covers, integrated pest management, and instruction on cleaning, laundering, and vacuuming. This project
will also evaluate the use and effectiveness of nurse counselors by telephone. The project will consist of nurses from
a call center who will make bi-weekly calls to patients to monitor the health status and health care utilization of
participants. The call center and CDN will track all information and provide it to the health centers' physicians on a
monthly basis, noting any changes to prescribed protocols. The call center nurses will also provide, on a monthly
basis, education to the participants on the following:

    •   Reducing/eliminating asthma triggers
    •   Asthma self-management inside and outside the home
    •   Home safety hazards
    •   Lead poisoning hazards

        The main goal of this project is to compare the care currently provided to children with asthma at C/MHCs
(usual care) with home and environmental strategies for reducing exposure to allergens. The project will increase
awareness by making clinicians, children with asthma, and their parents more informed of asthma triggers and proven
methods of controlling asthma.  Study outcomes include: the number of asthma acute care (unscheduled) visits to the
health centers and hospital emergency departments, missed school days, and patient and provider education and
patient self management for all of the participants, hi addition, CDN will develop modules to  expand and replicate
the project in additional HRSA-funded Community/Migrant Health Centers in Regions n and in and elsewhere.  This
project has the potential of evolving into a national project, with EPA providing the leadership to recruit additional
EPA regional offices and HRS A recruiting C/MHCs, providers, and patients. Finally, this project provides a critical
test  of translating research into clinical practice in underserved  communities,  as  well as strengthening the
collaboration between governmental, environmental, and health agencies within the public and private sectors, which
are sustainable over time.

RELATED ASTHMA REFERENCES
1.  Vital and Health Statistics, December 1995,10(193): table 62.
2.  "Surveillance for asthma - United States 1960-1995," Morbidity and Mortality Weekly Report, April 24,1998,
    47 (SS-I).
3.  Monthly Vital Statistics Report, August  14,1997,46(1): table 6.
4.  National Asthma Education and Prevention Program. Expert panelreport 2. Guidelines  for the diagnosis and
    management of asthma.  Bethesda (MD), National Institutes of Health, National Heart,  Lung, and Blood
    Institute, 1997.  NIH Publication No. 97-4051.
5.  Smith DH, Malone DC, Lawson KA,  Okamoto LJ, Batista C, Saunders WB.  A national estimate of the
    economic costs of asthma.  American Journal of Respiratory and Critical Care  Medicine  1997,156:787-793.
6.  Boulet LP, Boutin H, Cote J, Leblanc P, Laviolette M.  Evaluation  of an asthma self-management program.
    Journal of Asthma 1995,32:199-206.
7.  Lahdensuo A, Haahtela T, Herrala J, et al.  Randomised comparison of guided self management and traditional
    treatment of asthma over one year.  British Medical Journal 1996,312:748-752.
8.  Sperber K, Ibruhim H, Hoffman B, et al.  Effectiveness in a specialized asthma clinic in reducing asthma
    morbidity in an inner-city minority population. Journal of Asthma 1995,32:335-343.
9.  Doan T, Grammer LC, Yarnold PR, Greenberger PA. An intervention program to reduce the hospitalization cost
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    of asthmatic patients requiring intubation.  Annals of Allergy, Asthma, and Immunology 1996, 76:513-518.
10.  GreinederbK,LoaneKC,ParksP. Reduction in resource utilization by an asthma outreach program. Archives
    of Pediatric and Adolescent Medicine 1995,149:415-420.
11.  Moosa SE, Henley LD. An evaluation of parental knowledge of childhood asthma in a family practice setting.
    South African Medical Journal 1997, 87:42-45.

SELECTED ASTHMA WEBSITES

American College of Allergy, Asthma & Immunology - www.acaai.org
A good resource for patients and the families of those who suffer from allergy and asthma symptoms. Also, a most
useful site for purchasers of managed health care plans demonstrating the benefits of including specialty allergy care
services.
Asthma Management Model System (AMMS)
www.nhlbisupport.com/asthma/
AsthmaWeb - www.asthmaweb.net
My Asthma - www.myasthma.com
My Asthma is designed to help you take control of your asthma. My Asthma follows the National Asthma Education
and Prevention Program Guidelines for the Diagnosis and Management of Asthma.
Allergy and Asthma Network—Mothers of Asthmatics, Inc.
www.aanma.org
AAN-MA is the nationwide community-based nonprofit health organization dedicated to eliminating morbidity and
mortality due to asthma and allergies through education, advocacy, community outreach, and research.
Breath of Life
www.nhn.nih.gov/hmd/breath/breathhome.html
Virtual tour of the National Library of Medicine's exhibition on asthma. Includes images of famous asthma patients,
historical and multicultural perspectives.
JAMA Asthma Information Center- www.ama-assn.org/asthma
The Journal of American Medicine Association's Asthma Information Center.
Allernet Allergy & Asthma - www.allernet.com
The National Pollen Network's website on allergies and asthma.
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RACHEL CHAPUT, MPH
Asthma Program Coordinator,
US Environmental Protection Agency-Region II

Ms. Rachel Chaput served as the moderator for Workshop C, Environmental Interventions/Partnerships. Presenters
for this workshop included Louise Cohen, MPH; George Friedman Jiminez, MD; and David Rosenstreich, MD.
LOIHSE COHEN, MPH
Director, New York City Childhood Asthma Initiative,
New York City Department of Health

                              Two Approaches to Healthier Homes

       This presentation will cover two different partnership efforts focusing on assisting families in low-income
communities in New York City to reduce exposures to asthma allergens and irritants and to toxic pesticides. One
program is currently underway, and the other is in the initial development stages.

       Lehman Village Houses Asthma and Pest Control Project is a two-year demonstration project in a
public housing development in East Harlem.

       The partnership consists of:
              Lehman Village Houses Resident Association
              New York City Housing Authority
              US Environmental Protection Agency - Region n
              Hunter College Center for Occupational and Environmental Health
              New York City Department of Health, Childhood Asthma Initiative

       General project goals include:
           •  to promote healthier residential conditions
           •  to reduce potential exposure to asthma antigens or triggers
           •  to reduce use of toxic pesticides by residents and management

       The specific objectives are to reduce cockroach and rodent infestations using a least-toxic approach and to
change asthma-related behavior, specifically around reducing exposure to these allergens and irritants.

       The method used is a building-wide approach including resident and staff training and empowerment to:
              1.      Survey and inspect
              2.      Use sticky traps to measure infestation and focus activities
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               3.      Apply control measures
                          •  vacuum
                          •  clean
                          •  caulk and seal
                          •  apply boric acid and bait stations
                          •  educate
                          •  provide tools

       The evaluation is based on a pre-intervention and post-intervention comparison of pest infestation levels and
on a resident survey encompassing both self-reported use of pesticides and satisfaction with the program.

       Outcomes:  Three- and six-month post-intervention comparisons show a significant drop in cockroach and
mice infestations hi the intervention building, along with a significant increase in resident satisfaction with the project
 In addition, this stage of the project concluded that using resident teams to provide the intervention is a feasible
model.

       Future planning: This project took place in one four-building housing development The next step of the
project will include determining what it would take to implement this project throughout the Housing Authority's other
buildings.

       Bedford Stuyvesant Healthy Homes Initiative is a new project currently in the development stage. The
overall goal is to demonstrate the effectiveness of low-cost remediation efforts in addressing childhood safety and
health hazards in the home environment Through a multifaceted effort involving the training of property owners and
tenants in hazard identification and remediation strategies and providing in-home assistance in correcting  detected
problems, this pilot project will seek to reduce lead, mold, allergen, and injury hazards in the home.

       Project partners include:
           •   Bridge Street Development Corporation
           •   Neighborhood Housing Services of Bedford Stuyvesant, Inc.
           •   Medical and Health Research Association
           •   Hunter College Urban Public Health Program
           •   New York City Department of Housing Preservation and Development
           •   New York City Department of Health

       The program objectives are:
       1.      To increase the capacity of community-based organizations in me target community to provide
               training and technical assistance on home environmental health hazards and low-cost interventions to
               property owners and tenants;
       2.      To identify 70 eligible dwelling units to participate in the program;
       3.      To determine the prevalence of various home environmental hazards (e.g., lead, mold, allergens, and
               injury) in the target dwelling units;
       4.      To assess the validity of visual and tenant/owner self-assessment of home environmental hazards as
               compared with environmental sampling;

       5.      To increase property owner and tenant awareness of home environmental hazards and  ongoing
               maintenance strategies for reducing them;
       6.      To identify the barriers to successful implementation of low-cost hazard reduction measures and
               strategies for overcoming them;
       7.      To reduce the prevalence of home environmental hazards in the target dwelling units;

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       8.      To develop a set of recommendations based on a systematic evaluation for assessment and low-cost
               interventions aimed at reducing home environmental hazards.

       The overall intervention strategy involves: (a) identifying, selecting, and enrolling 70 eligible dwelling units, (b)
conducting an initial home assessment to detect the presence of environmental hazards (including environmental
sampling in a subset of 25 homes); (c) providing training to both tenants and property owners on hazard identification,
associated health effects, and simple, low-cost remediation/maintenance strategies; (d) working with tenants and
owners to create a practical work plan for addressing identified hazards and providing vouchers to participants,
redeemable at a local hardware store, to obtain needed supplies; (e) providing in-home assistance in reducing hazards,
including the services of a repair crew; and (f) evaluating both the validity of the risk assessment protocol and the
efficacy of the intervention in reducing identified problems.
GEQRGEl^EDMANsIlMENEZ; MD
Director, Occupational and Environmental Medical Clinic,
Bellevue - NYU Medical Center

                                       Work-Related Asthma

RECOMMENDATIONS
Clinical:
1)  Better  early recognition by primary care providers is key for secondary prevention (early diagnosis and
    treatment)
2)  Improved workplace hygiene (e.g., spill prevention, local exhaust ventilation) and industrial hygiene evaluations
    are important for primary prevention of new onset occupational asthma.
3)  Distinction of type of work-related asthma (WRA) is important for both prevention and treatment-sensitizer
    induced occupational asthma (OA) vs. irritant-induced OA vs. work-aggravated asthma.
4)  Identification of specific causal agents is a high priority.

Research is a critical need:
1)  Clinical research: improved diagnostic tools are needed, biomarker studies will be important.
2)  Epidemiology - Incidence and prevalence studies should be integrated into studies of workplace environmenal
    factors, home and school and community environmental factors. 24-hour exposure profiles are a good approach.
3)  An asthma registry would be a major resource.
4)  Include adult asthma as a high priority.
Prevention intervention research can address many of these issues efficiently and should be encouraged.
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DAVID L. RQSENSTRELCH, MD
Director, Division of Allergy and Immunology,
Albert Einstein College of Medicine and Montefiore Medical Center

                            Overview of Indoor Environmental Asthma
                             Risk Factors and Intervention Strategies

INTRODUCTION
       A Western lifestyle is strongly associated with the increased prevalence of asthma that has occurred
throughout most of the developed world over the past 25 years. One major factor thought to be responsible for this
rise in prevalence is the increased exposure to asthmagenic allergens and irritants within homes.  This is due to a
combination of increased amounts of allergen (e.g., more pets); increased allergen trapping (e.g., more rugs and air-
tight, energy-effic ient dwellings); and more exposure (it is estimated that the average American spends only ? hour
daily out of doors).

       The specific allergen or allergens responsible for asthma varies from residence to residence and from region
to region. As a result, there is no one allergen that is a more significant cause of asthma than any other. What is
important, however, is that most of us spend the majority of our time sealed indoors and inhaling large amounts of
allergen. Exposure to these allergens first makes people allergic and then sensitizes their airways.  The end result is
the chronic bronchial inflammation that is the pathologic hallmark of asthma. Reducing allergen loads in homes has
been proven to improve asthma and should therefore be the main focus of any asthma treatment program.

THE ROLE OF INDIVIDUAL ALLERGENS IN THE ETIOLOGY OF ASTHMA
       The four major indoor allergens responsible for asthma in the United States are dust mites, cockroaches, pet
dander, and mold spores.

       Dust mites are the most important indoor allergens in many areas of the world. Ideal growing conditions for
mites are high relative humidity, temperatures around 70 degrees Fahrenheit, and the presence of shed human skin,
which is their major food source. Almost all of the major mite allergen (Der P or Der F) is contained in mite fecal
pellets. Bedding has the highest concentration of mite allergen in the home.

       Although the animal dander of any mammalian pet can trigger allergic symptoms, cat allergen is probably
most common and best studied. Unlike mite allergens, the major cat allergen (Fel d 1) is carried on small particles
and can be detected in the air, on wall surfaces, and on clothing. Cockroaches are a very significant cause of
respiratory allergy among impoverished inner-city populations.  Cockroach allergens are similar in size to mite
allergens, and their highest concentration is detected in the kitchen. However, recent data indicate that the bedroom
is the most important room in the home in terms of cockroach allergen exposure and resultant sensitization.

       Molds are highly ubiquitous and are common causes of allergic asthma that is often quite severe.
Cladosporium and Altemaria species are the best recognized fungal offenders. Although fungi can be detected in
the air throughout the year, their presence is increased during warm, humid seasons. While fungal exposure usually
comes  from outdoor sources, mold also can be a source of perennial indoor  exposure, often growing on shower
curtains, in damp basements, and on indoor plants.

BEDROOM DUST AND ALLERGEN ELIMINATION
       The major focus of all successful allergen eradication strategies should be to reduce dust levels in patient
bedrooms. The bedroom of the patient should be as free as possible from all known and potential asthma triggers
regardless of evidence of sensitization.  The patient's bed must have allergen-impermeable covers that completely

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encase the mattress, box spring, and all pillows. This must be done even if the mattress and pillows are new.

        All rugs trap dust whether they are wool or synthetic. Hardwood  or vinyl  floors are preferable, but a
washable throw rug can be used.  If it is impossible to remove carpeting, vigorous vacuuming must be performed
daily.  Vacuum cleaners blow small dust particles out the back when in use, which can make asthma worse. HEPA-
filtered vacuum cleaners  or special  allergen-proof vacuum cleaner bags should be used to prevent this from
occurring.

        All upholstered furniture, drapes, old books, and staffed animals should be removed from the bedroom. Light
curtains can be used. Soft toys should be stored in plastic bags or sealed boxes. They must be washed in hot water.
 If this is not possible, they should be placed in a deep freezer once a month to kill dust mites. Woodwork and floors
must be thoroughly cleaned and scrubbed to remove all traces of dust The room must be cleaned daily and given a
thorough and complete cleaning once a week. The floors, furniture, tops of doors, window frames, and walls  should
be cleaned with a damp cloth. Air the room thoroughly, but keep  the door of ihe bedroom closed as much as
possible.

        All furry or feathered pets should be removed from the homes of asthmatic patients.  If this is not possible
(which it usually isn't), then no pets should ever be in the bedroom, even when the patient is not there.  Place the cat
Utter box outside of the residence if possible. Discard any feather or down pillows or quilts (or cover them with
special allergy-proof encasings). Use hypoallergenic pillows (polyester is the best) and washable blankets. The latter
should be washed frequently.

        Forced air ventilation is very bad for patients. Use filter material in the bedroom air inlet vent, so that all the
air that enters the room is filtered.  Wash or change this filter every month. High efficiency paniculate air filters may
be of value, especially in removing small allergen particles that remain in the air, such as animal dander and mold
spores. Mold spores can be effectively eliminated by regular ventilation and by washing affected areas with
household bleach.  Elimination of any  source of moisture is necessary. Humidifiers of any kind should not be used
continuously in the bedroom since increased humidity increases the growth of molds and dust mites.

COCKROACH ERADICATION
        Cockroach eradication presents a somewhat different problem that is often very difficult to solve, especially
in inner-city, multiple family dwellings. The general bedroom allergen elimination measures described above will help,
but roach infestation in the rest of the house must be curtailed in order to remove the constant source of new
allergen. The most important measures are to remove all sources of food and water that sustain roach populations.
Daily housekeeping measures include giving everything a good soapy wash, vacuuming  under all furniture, eliminating
all sources of food and water, and getting rid of clutter. Food should be kept in glass jars and plastic tubs with tight
lids or kept in the refrigerator. Used dishes should be washed immediately after use and not left in the sink. Pet food
should be kept in pertowls only for short periods of time, and kitty litter should be changed every few days. All holes
and  cracks should be sealed and  caulked.  Any leaky faucets and plumbing should be repaired.  Trash must be
emptied daily. Garbage cans should have lids and plastic bag inserts  that tie on top.

        The use of safe insecticides is  essential for eliminating roaches. Gel baits or bait stations are the safest and
most effective for treating asthmatic homes. These should be placed out of the reach of children and pets. They
must be changed every three months, and other insecticides should  not be used at the  same time.  Avoid insect
sprays or pesticide bombs, which can exacerbate asthma.

SUMMARY

        Thorough and continuous allergen elimination is probably the safest and most cost-effective means of treating
asthma and should be undertaken by every asthma patient. This should be done regardless of perceived or actual

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allergic sensitivity both because allergy testing has a significant rate of false negative reactions and because
prolonged exposure to allergen will produce new sensitivities.

REFERENCES

1.      Hudes, G, Vaghjimal, A, Rosenstreich, DL. "Asthma: Diagnosis and Management." Allergy in Primary
        Care. Ch. 11. ed. Altaian, Becker and Williams, W.B. Saunders, New York.

2.      Rosenstreich, DL, Eggleston, PE, Kattan, M. et al. "Role of Cockroaches in the Asthma Morbidity of Inner-
        City Children." New England J. Medicine, 336:1356,1997.
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 WORKSHOP P:
RICHARD J. BONFORIE, MD, FAAP
Vice President and Clinical Director of the Department of
Pediatrics, The Children's Medical Center of Hudson County, Jersey City Medical Center

       Dr. Richard J. Bonaforte served as the moderator for Workshop D, Coalition/Network Building. Presenters
for this workshop included Andrew Goodman, MD, MPH; William F. Clark, PhD, RRT; Sara L. Thier, MPH; and
George D. Falus, PhD.

ANDREW GOODMAN, MD, MPH
Associate Commissioner, Community Health Works,
New York City Department of Health

                   Partners in the New York City Childhood Asthma Initiative
       The New York City Childhood Asthma Initiative (NYCCAI) is a comprehensive, multi-component effort
designed to reduce asthma-related morbidity and mortality among children in New York City. The Initiative seeks to
accomplish this goal by mobilizing community partnerships, improving clinical management, improving family management,
reducing exposure to asthma triggers, developing supportive community environments, and monitoring and tracking
asthma

       The NYCCAI is comprised of several key components: citywide educational activities; capacity-building activities
to strengthen asthma management and control activities among city agencies, community organizations, and health care
providers; school-based programs; community outreach worker programs; community partnerships; and surveillance and
evaluation activities. The NYCCAI was launched in July 1998. During the course  of its development,  a variety of
partnership activities have been conducted to meet various needs of the Initiative:

              Program design partners. A partnership was convened at the outset of the Initiative to develop a
       vision, mission, and overall framework. These principles helped guide the development of requests for proposals
       issued by the Department to  support community-based asthma programs.  These partners, as noted below,
       included representatives of academia, health care, public health, and communities.
              Inter-sectoral partnerships.  The NYCCAI developed partnerships with key sectors, with an
       emphasis on increasing the capacity of the sector to support asthma management and control activities.  These
       sectors included: healthcare institutions, managed care, municipal agencies (schools, housing, day care, etc.),
       state and federal agencies, and business.
              Community-level partnerships. Community-based organizations have been funded by the NYCCAI
       to lead a coordinated approach to asthma management and control in six high-risk neighborhoods.  Among
       several tasks, the community organizations are establishing local partnerships to address asthma.
              Citywide partnerships. The New York City Asthma Partnership has recently been launched with
       approximately 40 convening partners. The purpose of this Partnership is to provide a forum for information
       sharing and networking, to identify and address priority policy and system issues, and to provide leadership to
       a citywide plan to address asthma.
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          Coalition Building
        William F. Clark, Ph.D., RRT
                 Co-chair
         Pediatric Asthma Coalition
          of New Jersey (PAC-NJ)
          An Idea is Born

Respiratory Care Committee of the New
Jersey Thoracic Society meeting
 - Experiences at Camp Superkids
 - Statewide effort to effect change was needed
 - Clearing house for all ongoing asthma
   initiatives
    • to support any agency seeking to help children with
     asthma
       The Three Initial Goals
  All New Jersey schools will understand and
  cooperate with the NHLBI Guidelines in
  partnership of care for managing asthma.
  All physicians treating children with asthma
  will use the NHLBI Guidelines as the
  protocol for asthma management.
  Parents and children will understand and
  apply the NHLBI Guidelines for managing
  asthma as educated consumers.
    The Start of a Movement

Effort to bring together organizations and
agencies to address pediatric asthma
statewide.
Initial meeting - January 21, 2000
 - government, medical institutions, community
  organizations, schools and pharmaceutical
  companies participated
 - Brainstorming and sharing session
 - List of concerns generated
      Coordinating Committee

Key organizations recruited to form a
leadership team
- American Lung Association of New Jersey
- New Jersey Thoracic Society
— United States Environmental Protection Agency
- New Jersey Department of Education
- New Jersey Department of Health and Senior Services
- New Jersey State School Nurses Association
- UMDNJ/New Jersey Medical School
- UMDNJ/Robert Wood Johnson University Medical School
       A Coalition is Born

Planning Session - May 19,2000
 - Establish agreement on goals
 - Map out plan to achieve and measure goals
 - Create unified strategies and actions to achieve
  goals
 - Set priorities and identifying resources for
  action plan for next two years
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        Definition of Coalition

    Act of combining into
    one body or community
     in an alliance for joint
                 action.
    Paraphrased from Webster's New Collegiate Dictionary
     Three Goals become Five

 1. All providers of public and private
  education and child care in New Jersey will
  understand and cooperate with the NHLBI
  Guidelines in partnership of care for
  managing asthma
2. Ail physicians and primary health care
  providers treating children with asthma will
  use the NHLBI Guidelines as the protocol
  for asthma management
      Three Goals become Five

 3. Care givers and children will understand
   and apply the NHLBI Guidelines for
   managing asthma as educated consumers.
 4. Payers and purchasers will value asthma
   prevention and provide asthfna wellness
   prgams as part of their basic package which
   incorporates NHLBI Guidelines and
   provides coverage for medications, devices,
   and education.
     Three Goals become Five

5. To promote good indoor and outdoor air
 quality to improve the quality of life of
 children with asthma as is recommended in
 the NHLBI Guidelines.
     Goals Defined and Refined

Croups formed with a facilitator for each of the goals.
The following were identified for each of the five goals:
' • Indicators
 - What is already being done
 - What needs to be supported
 - Sources of potential partners
 - What else needs to be done
 - Two year action plan
 - Resources needed to achieve the action plan
       A Future of Inclusion
 Bring more agencies, organizations and
 people into the coalition
  — Member recommendations
 Begin work on action plans
  - Taskforces for each goal
 Help others to meet their individual goals
  — Clearing house for information
 Build on initial coalition to include adult
 asthma goals
                                                                                           12
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SARA L. IHIER, MPH
Program Associate, Asthma Initiative,
Robert Wood Johnson Foundation

THE FOUNDATION
       The Robert Wood Johnson Foundation's mission is to improve the health and health care of all Americans.
Remaining faithful to our mission means keeping our commitment to the American people in everything we do, from
encouraging healthier living and the conditions that promote better health to promoting positive changes in the way
health care is delivered in this country.

       Our strategies transcend any single perspective; we explore many possible solutions with our grantees. Our
greatest strength must be in recognizing the good ideas of others and in developing our own.  The common element in
all of our work is its reflection of the Foundation's mission: to improve the health and health care of all Americans.

PRIORITIES AND STRATEGIES
       In order to  achieve the most impact with our dollars, we concentrate our grantmaking in three broad areas:
        1. Access to Care - Lack of coverage is tiie single greatest barrier to obtaining timely, appropriate health
       care services. Our goal is to  assure that all Americans have access to basic health care at a reasonable
       cost.
       2. Substance Abuse - Tobacco, alcohol, and illicit drugs inflict an enormous toll on Americans. Our goal is
       to promote health and reduce the personal, social, and economic harm caused by substance abuse.
       3. Chronic Care - One hundred million Americans suffer from a chronic health condition, and as the
       population ages, that number is almost certain to increase.  Our health care system tends to focus on acute
       care rather than on meeting the multiple, continuing needs of patients with chronic conditions. Our goal is to
       improve the way services are organized and provided to people with chronic health conditions.

COALITION-BASED PROGRAMS AND THE FOUNDATION
       Many of the programs the Foundation funds have been centered on local coalition building. Some examples
    of the national programs that utilize coalitions as their primary change strategy include:
    •  Reducing underage drinking through coalitions/AMA
    •  Matter of Degree: community/campus partnership to reduce drinking in college
    •  Smokeless states: assess the role of coalitions in reducing youth smoking
    •  Passage of a local ordinance regulating alcohol retailers
    •  Reduction in liquor advertisements on billboards
    •  Initiation of an alcohoMree, family-oriented First Night
    •  Building a capacity for future action and raising awareness of substance abuse in localities
    •  Helping draw attention nationally to the need for coordinated local responses  to substance abuse.  A
       resource manual and case studies produced by the project are now being circulated to other communities
       interested in media advocacy around these issues.

INNOVATIVE APPROACHES—A DISEASE FOCUS
       In me past, much of the Foundation's programmatic support has gone to effect overall "systems of change."
 Recently, the Foundation has taken its first step in addressing individual chronic disease management and care
strategies. The initial funding in disease-specific programs is  aimed at pediatric asthma. Evolving programs in
depression and diabetes are soon to follow.

PEDIATRIC ASTHMA INITIATIVES
       It is eminently clear that pediatric asthma is a concern in the United States. With approximately 5 million
children affected, asthma is the leading cause of school absenteeism.  It has become a burden not only for the

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children who suffer with asthma, but also for their families and the health care system, with medical costs reaching
56 billion annually.

        The Foundation has a mix of asthma programs that complement and support each other. The Foundation is
working to align these programs with one another through evaluation measures and communication strategies.  We
recognize that although the approaches are different, the ultimate goal of improving asthma care and health care
outcomes creates an important synergy among the projects:
    •   Policy Options to Improve Pediatric Asthma Outcomes: This analysis will help to identify and articulate
        policy levers of change around preventive strategies.
    •   Brief Intervention for Providers: We will fund regional training for clinicians serving vulnerable populations
        along with technical assistance, such as tool kits for office use and educational materials for patients based
        on the new pediatric guidelines.
    •   Barriers to Financing and Treatment of Pediatric Asthma:  We have funded analysis to document
        variations in treatment and financing mechanisms and to convene an expert panel to explore new models to
        overcome the barriers identified.
    •   Improving Asthma Care for Children (National Program): Focus on health clinics and Medicaid Managed
        Care programs with linkages to schools and childcare centers.  Using evidence-based guidelines, promote
        self-management principles and practices. Develop systems of care that incorporate tracking and follow-up.
    •   Demonstration of Emergency Room-Based Care (National Program): Targeting high-risk ED users,
        incorporate provider and patient education interventions. Provide linkages to primary care providers. Build
        on existing surveillance systems to promote tracking of patients' clinical management.
    •   Allies Against Asthma (National Program): This program uses community coalitions to elicit change to
        improve asthma care.

WHY A COALITION-BASED APPROACH TO PEDIATRIC ASTHMA CARE?
        Allies Against Asthma  recognizes that to address asthma comprehensively, there must be a multifactor
approach. Many strategies have focused on specific concerns related to asthma, such as environmental changes,
physician practices, and funding of health care.  A community-based approach, utilizing coalition and partnership
building, creates a forum for professional providers to work closely with community members and groups.

        Another goal of the Foundation and of all of its community-based programs is to develop core capacities and
community leadership that can be sustained beyond the grant period. The requirements of local matching funds and
active engagement of key constituents demonstrate dedication  to the issue and increase the potential  for
sustainability. Core representatives on the coalition include community-based organizations, schools, medical service
providers, public health and environmental agencies, managed care organizations, housing organizations, academic
institutions, childcare providers, businesses, religious organizations, media, voluntary health agencies, grassroots
groups,  children with asthma, parents of children with asthma, and other community residents.

        After receiving over 250 letters in response to our call for proposals, it is clear that this issue is important to
many communities. Though coalitions varied in their level of maturity, each demonstrated a strong resolve to address
the concerns surrounding asthma care in their communities. We are pleased to know that many local efforts exist and
hope that our call for proposals was the inspiration for many to take additional steps to engage the community in
supporting asthma control strategies.

PROJECT  LOGISTICS
        Through Has Allies Against Asthma initiative, up to eight communities will be awarded one- year organization
and planning grants of up to $150,000.  Sites that successfully complete the planning process will be eligible to apply
for implementation grants of up to $450,000 a year for up to three years to support the coalition, targeted activities,
and evaluation.
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       A few of the many outcomes the program hopes to achieve include:
       To improve the quality of or to provide new access to asthma-related medical services in clinics, schools, or
       community sites.
       To develop and improve tracking systems to identify and follow patients and families.
       To provide community-based health education to improve identification and self-management of asthma and
       involvement in coalition activities.
       To undertake prevention efforts to reduce exposure to environmental precipitants (e.g., tobacco smoke,
       allergens, etc.).
GEORGE D. FALUS, PHD
Executive Vice President, HispanoAmerican Biomedical Association

                          Asthma Management in Latino Communities
                      Sponsored by The HispanoAmerican Biomedical Association

       The New York Times, May 22,2000 - "As the number of cases in the United States rises sharply,
       researchers scramble to find the cause...27 states have no asthma monitoring program, 30 states
       have no updating program, and 40 states have no ready access to information... the rise in the
       number of asthma cases is a mystery. It is the most common chronic disease in children and the most
       common reason for school absence and trips to hospital emergency rooms... "

       Despite this alarming news, no substantial efforts have been made to determine in which parts of the country
and among which groups the disease is hitting hardest. Prevention research is limited to tertiary issues. Community
interventions sponsored by NIH exclude Hispanic researchers.

       Hispanic research groups such as the Puerto Rico Asthma Research Program have gathered substantial data
on asthma prevalence, morbidity, and mortality, and have developed comprehensive strategies to control its rising
prevalence.  This is a remarkable achievement considering that the Center for Disease Control and Prevention
(CDC) and the National Heart, Lung, and Blood Institute (NHLBI) have not provided data on the subject
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       Health care providers serving Hispanics in the inner cities are raising fundamental questions regarding the
increased prevalence and severity of asthma that specifically affects the population of Hispanic origin in the United
States. For example, why is the prevalence of asthma in Puerto Rico the highest among American citizens? What is
the role of genetic and environmental factors when children from Puerto Rican parents relocate to mainland?

TODAY'S SITUATION
Asthma prevalence in Puerto Rico is estimated at:
   Cumulative prevalence (age 6m-lly): 28%
   Point prevalence: 14.5% to 17%
   Age of onset: 50% before 1 year

    •  Of 600,000 subscribers to a private health plan, 45,000 have asthma
    •  Few patients have "real" access to specialists
    •  Only 2.4% of asthmatics are prescribed inhaled steroids
    •  26% of all asthmatic patients are hospitalized at least once
    •  56% of all asthmatic patients have visited an emergency room
                             Montelagre/Rosa Perez/Orengo

The pattern of hospitalization is as follows:
   Hispanics: 62.9/10.000
   Blacks: 59.9/10.000
   Whites:  12.2/10.000

       The economic costs of asthma are estimated to exceed $6.2 billion dollars per year in the US, representing
1% of total annual health care costs (Smith et al., 1997). Approximately 60% is spent on direct medical costs and
about 40% on indirect costs. Most of these costs are driven by unscheduled urgent medical visits, emergency
department visits, and hospitalizations in a small proportion of the total patient group.

       An analysis of 1,528 asthmatic Hispanic children conducted by Lopez et al. concluded that the high morbidity
in this population appears to be a multi-factorial problem.  Effective intervention must address access to and quality of
care, inadequate patient  attention  to symptoms, the underutilization of inhaled corticosteroid medication, poor
adherence to protocols, exposure to allergens, lack of non-emergency care, poor problem solving skills, lack of
emergency planning., difficulty with transportation to ambulatory care settings, as well as continuing medical education
issues.

INTERVENTION OPTIONS AND PLAYERS
       A large body of evidence supports the concept that improving the quality of health care delivery to asthmatic
patients, encouraging asthma education, and implementing asthma  disease management in medical practice can
improve clinical outcomes, raise quality of life, and reduce costs of asthma care. Although the evidence is vast, the
cost-effective and practical-to-implement options are few and perhaps limited to a disease management collaborative
approach between physicians, hospitals, patients, and payers, which integrates  a best practice model to disease
treatment and prevention. However, intervening in a large ethnic community not covered by a single plan, such as
the Puerto Rican community in the continental United States, represents a serious challenge. The issues remain how
to reach out to the primary care providers and specialists serving this population, how to provide education and case
management to asthmatic patient populations under various roofs, and finally, how to obtain the collaboration of
payers.

       There is no universal blueprint for implementing such a program in the diverse "real world" of clinical

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settings, but precedents of successful interventions addressing management of HIV/AIDS in Hispanic/Latino
communities provide a guideline to developing a collaborative approach to combating asthma. This strategy is based
on coalition building and collaboration between the Public Health Service, the professional community, and health care
delivery and academic institutions.

PROMOTING ADHERENCE AND SELF MANAGEMENT
        Evidence suggests that fewer than 40% of persons with asthma adhere to a recommended therapeutic
regimen. This may account for a significant portion of the high costs, paid both personally and by healthcare dollars,
associated with this disease.   Failure to comply with prescribed drug regimens is a significant contributor to
healthcare costs in the United States, costing as much as $100 million annually.  Inappropriate management
contributes to higher costs resulting from severity and hospitalizations. Now, patients are encouraged to adopt many
of the techniques for achieving self-efficacy that have recently emerged. Available data offers an exciting new
paradigm to use in the future with all chronic diseases. Because a comfortable relationship between the patient and
the healthcare provider is integral to establishing effective disease management, the physician becomes the primary
target of any intervention focused in Disease Management.

PROMOTING BETTER STANDARDS OF CARE OF ASTHMATIC PATIENTS
        Despite the fact that the NHLBI Guidelines have been distributed on multiple occasions, they are not widely
followed outside  of pulmonary and allergy practices. Other than at the University Hospital, there is no clear
mechanism in place for dictating or enforcing practice guidelines. Since traditional training courses and the current
dissemination of guidelines have not proven effective in reaching physicians, the Hispanic Consortium on Asthma has
proposed novel strategies based on community participation. Following a strategy that has proved highly successful in
the health care industry, it is most likely that an intervention program supported by printed materials provided to
physicians in their own neighborhoods, affiliated hospitals, community  centers, or their own offices will be more
effective in enhancing knowledge and changing practice behavior than the traditional academic training courses.

DISMANTLING BARRIERS TO ASTHMA EDUCATION AND SELF-MANAGEMENT
               Asthma referral centers or case management and education facilities are often established to
confirm the diagnosis of asthma, to optimize medical therapy, to identify the factors that contribute to asthma severity,
to develop a plan to manage triggers, and to remove the barriers of adherence to asthma therapy.  These centers
have proven extremely useful in reducing the cost of care and lowering the high health care utilization for "asthma
patients" who do not have asthma. However, to improve asthma outcomes hi underserved groups, we must first
dismantle obstacles to ambulatory care.  Obstacles in Latino communities have been clearly identified mainly as
language, cultural, and transportation issues.

        Expanding and strengthening patient support centers should be the cornerstone of a global intervention.
Existing centers and programs could benefit from training activities and additional human resources provided by the
various players involved in containing asthma. New centers and programs could be established within the physical
limits of the  community and within the framework of community clinics. Academic technical support for these
centers may  improve the chances of obtaining carve-out contracts with Medicaid managed care organizations,
providing a referral base for these programs and therefore offering more referral outlets for physicians in the
community.

PREVENTION ISSUES: AVOD3ING EXPOSURE TO ALLERGENS AND IRRITANTS
        Patients are increasingly educated and trained to manage then- asthma. However, considering the increase in
tasks asked of patients and the number of allergens and irritants that trigger the asthma attacks, the question
becomes: How can patients do ah1 that is asked of them without asthma being at the center of their lives? What if
optimal compliance has to be tailored to fit the characteristics of both the patient's asthma and the environment in
which he or she lives?

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        Thus, measuring levels of allergenic factors and air pollutants in the areas in which asthma is prevalent
becomes a prevention priority. A coordinated action between the community, the public health sector, and academic
institutions would be invaluable in "mapping" and detecting hazardous substances in each area of high prevalence and
would therefore contribute to exposure avoidance or pollution containment action to protect those communities.

MEASURING OUTCOMES
        Evaluating or assessing adherence requires that the approach used reflects the therapeutic task of interest:
taking the correct medication in the correct dose at the correct time using the correct technique, making and keeping
clinic appointments, following recommendations for environmental control, and completing required questionnaires or
diaries.  Research suggests that no single method is an accurate measure of adherence; the best approach utilizes
multiple assessment techniques concurrently.

        The Hispanic Consortium on Asthma supports the concept of establishing an Asthma Center based at the
Ponce School of Medicine, in Puerto Rico, to maintain a database of information gathered on the various interventions
in Puerto Rican communities.  The task of such a center would include establishing accuracy of diagnosis, proper
use of ICD-9 codes by providers, under-diagnosis of pediatric asthma and over-diagnosis in adults, usage of free
medications obtained  in health clinics or the number and type of prescriptions written by the providers, and critical
data needed to evaluate standards of care.

RECOMMENDATIONS
        Our Consortium recommends the establishment of a federal program that supports a collaborative effort to
address the issues mentioned above by the various organizations currently involved in the treatment and prevention of
asthma in Latinos.

        Coalitions and consortia can address the various issues  involved in improved asthma management at the
grass-roots level. We recommend that public health service agencies: 1) establish a cooperative agreement program
supporting at least 25 grantproposals aimed at reducing exposure to allergens and irritants, reducing production of air
pollutants, improving prevention, monitoring health status and prevalence, expanding asthma education and case
management, improving standards of care delivery and adherence to guidelines, and collecting data on environmental
condition, severity of disease, and other parameters that are essential to control the epidemic; and 2) provide support
for an Asthma Center at the Ponce School of Medicine to gather, analyze, and disseminate information relevant to
the program, and to  establish a mechanism for analyzing the mapping of environmental conditions in  Latino
communities with high prevalence of asthma.
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WORKSHOP E: MANAGER CARE ASTHMA INITIATIVES
NILSA GUTIERREZ, MD, MPH
Medical Director, HCFA-Region II

SUSAN CONRATH, MPH
Epidemiologist, US Environmental Protection Agency

       Dr. Nilsa Gutierrez and Susan Conrath served as moderators for Workshop E, Managed Care Asthma
Initiatives. Presenters for this workshop included Leslie Lotano-Saba, RPh, MS; Foster Gesten, MD, MPH; Michael
Cropp, MD; and Jose Rodriguez Santana, MD.

FOSTER GESTEN; MD
NYS Department of Health, Office of Managed Care,
Albany, New York

       This presentation described the results of a focused clinical study performed by the Island Peer Review
Organization (TPRO) on behalf of the Department of Health to evaluate the care received by asthmatic enrollees in
39 managed care plans. The study focused only on the population of enrollees who were seen in the emergency
room or hospitalized for asthma between April 1998 and April 1999. This was a 're-measurement' study based on an
evaluation done in 1996, which revealed overall a significant gap between NAEPP guidelines (at that time, EPR-1)
and actual practice. Since that time, health plans have had an opportunity to initiate projects to improve care; this
study was designed to measure the effect of those efforts. In addition, this study differed from the previous study
since it included enrollees under age five, some new indicators based on EPR-2, and expanded the population studied
to include Child Health Plus enrollees and members of self-selected (voluntary) commercial plans.

       Results from Medicaid managed care plans showed overall improvement on most indicators including trigger
assessment, use of peak flow meters, patient education, ambulatory follow up, and use of inhaled anti-mflammatory
medications. There was also an appropriate reduction in the use of methylxanthines and oral beta agonists.

       However,  rates  of documented evaluation for  tobacco  exposure  were lower than  expected  and
documentation supporting an asthma management plan was rarely seen in medical charts. In addition there remains
room for improvement in all key areas.

       Additional observations showed that for children under age five, diagnostic codes were not always accurate
in defining asthmatics, supporting the potential for both under- and over-diagnosis using administrative data for
identification.

       Next steps include the development of quality improvement initiatives that have the potential to address on-
going challenges in the delivery of 'best practice' care for asthmatics.  The state has also developed a patient survey
to further evaluate the quality of care and patient education provided to children and adults with asthma.
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MICHAEL CROPP, MD
Executive Vice President and Chief Medical Officer,
Independent Health, Buffalo, New York
                          Asthma Management at Independent Health

       Asthma is a chronic condition often seen and treated as an acute exacerbation of symptoms. With increasing
prevalence (61%rrom 1982-1994) and increasing mortality (up 67% from 1970-1995), it is clear that our traditional
medical model and approach to treating this condition is not working.

       The following schematic, useful for viewing any number of chronic diseases, is particularly revealing when
applied to the management of asthma.
            (Symptomatic A
             individual   /
                                         Increased  5
                                        morbidity, mortality
                                           and costs
       Let's look at what we know about each of the above boxes-critical barriers or challenges we face in
managing asthma.

       1) Poor access to health care services leaves many asthmatics untreated.

       2) 40% of asthmatics don't think they have asthma;
          22% of asthmatics with severe asthma don't recognize it as being severe;
          50% of asthmatics feel it is normal to go to an ER;
          30% of primary care MD's feel it is normal for asthmatics to be seen in an ER;
          46% of physicians appropriately assess asthma severity.

       3) While 83% of physicians say peak flow measurement is important, only 29% of patients report they have
          peak flow meters;
          only 10% of asthmatics have greater than 7 controller medicine prescriptions per year;
          67% of asthmatics have only one controller medicine prescription per year.

       4) Even though 29% of asthmatics have peak flow meters, only 10% use them regularly.
          Rule of thirds:

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          1/3 of patients (approximately) have a controller prescription;
          1/3 use them correctly;
          1/3 of them are compliant;
          leaving 1/27 or 4% of asthmatics getting appropriate therapy.

At Independent Health, a traditional approach to case finding and case management led to the following results:
Independent Health Asthma Data
                             ER Visit Rates
           1997                2.91/1000
           1998                2.38/1000
           1999                2.46/1000
Inpatient Admit Rates
     .89/1000
     .73/1000
     .69/1000
1998 Measures
                      Controller and prescription rate
                      Individualized care plans
                      Peak flow meter use
                      Routine follow-up
                      Trigger elimination
                      Oral steroids available
       76%
                4%
               40%
               66%
               55%
               58%
        In spite of these respectable numbers, we've learned some important lessons:
           »   Case management is effective but 2/3 of next year's high utilizes are low utilizers now
           •   Information useful to physicians at the time of a patient encounter is critical
           •   A community approach is essential
           *   Maximal use of the following elements will give patients the best chance for success:
               > Daily use of controller medicine
               > Individualized care plan, 365 days a year
               > Peak flow meter
               > Use of spacer device
               > Routine follow-up visits
               > Elimination of triggers
               > Availability of oral steroids — for immediate use at home

        To address the above bullet points, the Western New York community has come together to form the WHY
 Asthma Coalition, a collaborative group comprised of physicians, health plans, hospitals, businesses, schools, the
 American Lung Association, and the local health department The focus of the Coalition's efforts is on three key
 areas: Mindset Skillset and Tools.

        Changing the mindset of providers and patients to recognize and treat asthma as a chronic controllable
 condition requires a broad, community-based effort. Mass marketing, media, patient education materials, etc., must
 all be consistent to reinforce this important concept  This kind of community effort helps assure that physicians and
 nurses have the skills that supplement the skills present in other community organizations and that all of their skills
 align with and support the critical skills our patients and their families need to maintain control of their illness.

        Tools, whether just-in-time information used by physicians, data collection tools to identify and remove
 barriers for the best possible care, or tools like patient care plans will be more effectively understood and used if
 there is consistency across the community. By working together, sharing experience, knowledge, and resources, we
 believe we can make important progress in helping western New Yorkers with asthma regain control of their lives as
 well as  their condition.
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JOSE RODRIGUEZ SANTANA, MD
Director, The Asthma Project for Children in Puerto Rico,
Cardiovascular Center of Puerto Rico

                     Short Summary of Asthma Among Puerto Rican Children

       In the last two decades, it has become evident that ethnic minorities, in particular those of low socioeconomic
status, are disproportionately represented in the trends of increasing asthma prevalence, morbidity, and mortality.
Within these groups, Hispanics are the most affected. Studies have consistently shown higher asthma prevalence
rates among Puerto Ricans than any other ethnic group. According to data from the Hispanic Health and Nutrition
Examination Survey (HHANES), Puerto Rican children had an 11.2% asthma prevalence in the last year as
compared to 5.9% for African American children, 5.2% for Cuban American children, 2.7 for Mexican American
children, and 3.3% for non-Latino whites. (Corter-Pokras OD, Gergen PJ, Reported asthma among Puerto
Rican, Mexican-American, and Cuban children, 1982-1984. Am J Public Health 1993; 83:580-58).

       Additional studies have been conducted in New York City, specifically in the Bronx, where most children are
of Puerto Rican ethnicity. Grain et al. reported that 17.9% of Latino children had had asthma as compared to 11.6%
of non-Latino African  Americans and 8.2% of non-Latino whites. (Grain EF,  Weiss KB, BijurPE, Hersh M,
WestbrookL, Stein RK. An estimate of the prevalence of asthma and wheezing among inner-city children with
asthma. Pediatrl994; 94:356-362). In another study conducted by Beckett et al. in Connecticut, in which 9,276
mothers were interviewed regarding their children's  asthma, it was demonstrated that asthma was significantly
associated with Hispanic ethnicity, mainly Puerto Rican. (Beckett WS, BelangerK, GentJF, Holford TR, Leaderer
BP. Asthma among Puerto Rican Hispanics: A multi-ethnic comparison of risk factors. Am. J. Respir. Crit
CareMed. 1996:154:894-899). The asthma prevalence in this study was 18.4% in Latino children, 11.2%innon-
Latino African American children, and 7.4% in non-Latino white children.

       More recently, Homa et al. report that annual asthma  mortality in Puerto Ricans is 40.9% per million as
compared to 15% hi Cuban-Americans, 9.2% in Mexican-Americans, and 15.6% per million in other Hispanic -
Americans. (Homa DM, Lara M. Asthma mortality in US Hispanics of Mexican, Puerto Rican and Cuban
heritage, 1990-1995. Am J Respir Crit Care Med 2000:161:504-509). Furthermore, Puerto Ricans have higher
mortality of asthma than do other Hispanic groups in all of the regions in the United States. These results suggest that
there are other factors than poverty and environmental exposures that may influence me asthma prevalence.
       To address the issue of asthma in Puerto Rico, Dr. Jose Rodriguez-Santana, a former grantee of an MCHB
project, hi collaboration with the Puerto Rico Department of Health and pharmaceutical and health insurance
companies, organized The Puerto Rico Coalition Against Aslhma. This community-based group began work in
August 1999 with the initial support of the State Department of Health and is currently in the process of creating its
legal identity as a not-for-profit community organization. As part of its initial efforts, a Center of Excellence for
Asthma Care to Children was developed.  It includes a multi-disciplinary approach with an educational program
sponsored by GlaxoWellcome, Inc. "The Colors of Asthma"  aimed to train families and promote the self-
management to children wth asthma.  This is  the only asthma program mainly directed to children of low
socioeconomic  status  covered by the  government- supported health care reform.  During its first year of
implementation, more than 100 families benefited from it, and it showed a significant decrease in emergency visits,
hospitalizations, and short acting b-agonist drugs in asthmatic children.

       These Puerto Rico initiatives were presented at the multi-federal agency-supported Asthma Summit of

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Region II in New York (May 2000). As a follow-up to the NY Asthma Summit, The Puerto Rico Coalition Against
Asthma expanded its members and organized the First Asthma Summitjn Puerto Rico.  More than 30 participants
representing public and private organizations collaborated in the organization of that summit. It was partially funded
from a multi-federal agencies effort and guests from several Federal Agencies were invited to participate and hear
several keynote speakers. The speakers included Dr. Carmen Feliciano, Secretary of Health; Dr. Jose Rodriguez-
Santana; Dr. Federico Montealegre; and Dr. Domingo Chardon, who covered several important topics regarding
asthma in Puerto Rico. In addition, the summit had several workshops that dealt with several issues including
community involvement, environmental risk factors, and many other topics. We had more than 700 participants, and
it is evident that this year we created the momentum for problem-solving asthma initiatives in Puerto Rico.

        It was clear to us that The Puerto Rico Asthma Coalition is a success and is the leading community-based
organisation able to unite efforts to address the asthma problem in Puerto Rico. This initial effort can no longer be
under the responsibility of a single agency or any other individual effort. Developing asthma projects in Puerto Rico
requires: a) collaboration between the federal government and the private sector to improve surveillance and tracking;
b) developing an intervention program that supports projects aimed at decreasing asthma morbidity and mortality in
Puerto Rican asthmatics; c) promoting activities to reduce exposure to allergens and irritants and improve indoor and
outdoor air quality, d) sponsoring the development of an Asthma Study Group of Puerto Rico (The Coalition Against
Asthma in Puerto Rico).

Drafted by:
Jose Rodriguez-Santana,  MD and Federico Montealegre, VD, Immunologist  Director, Asthma Group, Ponce School
of Medicine
 LESLIE LQTANO-SABA, RPH, MS
 Director, Pharmacy Services, Asthma Disease Management Program,
 Horizon-Mercy
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 Mercy
 A Program ofllnriimi IlftlD
Asthma Disease
Management
      Horizon Mercy
      Asthma Relief Program
      Leslie Lolano-Saba RPh. MS
      Director, Pharmacy Services
      Background

3 Horizon BCBS NJ
  - Delegated Medicaid membership
  - Credentialling, Legal, HR
3 Mercy Health Plan
  - Medical Claims Processing
  - Member/Provider services
-.3 Presence in all 21 counties
3 40% of Medicaid Managed Care
  eligibles
Hbrizon-O.w.
Mercy
            Membership
        170,000 Members
         -80% minorities
         -130.000 Medicaid
           • TANF (AFDC). SSI. DYFS. NJCPW
         - 40.000 KidCare
         - Mandatory enrollment of SSl/DDD
          10/1/00
                                         Membership Challenges

                                   •3 High member turnover rate
                                     - 6% disenrollment rate each month
                                       • 59.7% involuntary. 0.3% voluntary
                                     - 6.9% enrollment rate each month
                                   a Outcome measurements
                                     - 65% of members participating in asthma
                                      program lose eligibility within 1 year.
                                     - Encounter capture is sub-optimal
                                   a Locating and enrolling members
                                    oi,MB
-------
Mercy
=•    Asthma Relief Program

 3 Based on NIH guidelines
 3 2 nurses, 3 non-clinical staff, 1
   medical director, 9 member advisory
   committee
 rs Stages
   - Identification and referral
   - Risk stratification
   - Intervention determination & enrollment
   - Evaluation & follow up
                                                 Horizon-
                                                 Mercy
                                                                   Program goals
                                                             •s. Reduce ER visits and IP admissions
                                                             3 Improve prescribing and compliance of
                                                               long-term preventive meds.
                                                             3 Ensure DME is available & utilized
                                                             3 Improve quality of life
                                                             3 Reduce costs associated with
                                                               improperly treated asthmatics
       Identification & Referral

 •js 10% prevalence rate
 3 CM, SW, inpatient, Pharmacy,
   Claims analysis, self-referral
 3 Nebulizer requests
• 3 1999 data- 2896 unique referrals
                                                      Horizon-*.^.
                                                      Mercy
                                                                   Risk Stratification
                                                             3 Risk stratification
                                                               - Based on medical and pharmacy claim
                                                                 history and other risk factors
                                                               - Other risk factors include
                                                                 • previous admissions, smoking, siblings with
                                                                  asthma, psychosociat
                                                               - 3 levels: low (8%), moderate (73%), high
                                                                 (19%)
                                                                           Uufe Safta RPh US
          Intervention determination
      s Based on
        - risk stratification
        - member's willingness to participate
        - physician's willingness to support
        - geographical location
      n Member contacted to encourage
        participation
                                               90

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                                     M/A C
                              WoUl C
                              Ou*i 17
                    17
     GIRO l~
                 Abuuto! (Ptavtnd. v«nU»Gn)
                                                        Mercy
                                                                     Interventions
                                                               3 Home based education with RT or RN
                                                                 - Disease overview
                                                                 - Environmental assessment
                                                                 - Triggers
                                                                 - Medication review & equipment needs
                                                                   assessment
                                                                 - Action plan development
                                                                 - Quality of Life
Horizon-ftO.
Mercy
  ^   a Specialist Referral
  ~~     - Pulmonologist or Allergist
         -Criteriafollows NIH guidelines
         — Encourage member to contact PCP and
           request referral
         — Follow up in 30 days to ensure referral
           occurred and visit scheduled
                                                        Me
                                                               3 Episodic Case Management
                                                                 - Acute monitoring post hospitalization
                                                                   where case management is necessary
                                                               a FQHC referral
                                                               3 Therapeutic intervention letters
                                                               3 General and targeted mailings
                                                               3 Social case management
i,—i_«     Evaluation & Follow up

   *j   H 30, 60, 90 day phone calls
   ~     - Review triggers
         -Quality of Life
         - Review action plan and diary
         - Medication review
         -Stress MD/Patient relationship
       a Referral to other sources if necessary
                      UlfltSabaRFh US
                                                        Mercy
                                                                     Other measures
                                                               a Using HEDIS methodology to assess
                                                                 the use of long-term preventive
                                                                 medications
                                                                 -4th quarter 1999 baseline
                                                                   » 40.3% of asthmatics on long-term preventive
                                                               a Specialist referrals
                                                               m Use of nebulizers '
                                                                             UMtSituAAi.ua
                                                  91

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Mercy
             Successes
      3 Community linkages and partnerships
         - American Lung Association
           • school programs, task force, Camp SuperKids
         - Pediatric Asthma Coalition
         - NJ State Nurses Association
         - NJ State Minority Task force
         - FQHC partnerships
         - HP&E member ed. sessions
      3 Provider advisory committee
                                                      m.
  3 Physician support and education
    - Office visits  •
    - Pulmonology specialist mentoring
  3 Manufacturer support
    - grants & CME programs
    - peak flow meters
    - educational materials
Horizon-*.??.
Mercy
             Lessons learned
      a AT&T language line is valuable •
      •3 Evening calls are effective
      3 Building trust is key
      3 Physicians like written communication
      3 Small tips achieve great results
                     l«l»SabaflFn US
                                                      Mercy
L-ftB.
        Program Challenges
  3 0-5 age group diagnosis & treatment
  3 Physician education and compliance
   with NIH guidelines
  3 Loss of eligibility and 30 day periods
  3 "Steroid phobia" and carrying inhalers
  3 Variability of understanding by school
   admin. & staff
                                                92

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DAY Two: WELCOME AND OPENING REMARKS
GILBERTO CARDONA, MD
Regional Health Administrator, PHS-Region U

       Dr. Gilberto Cardona served as the moderator for Day Two of the Region II Asthma Summit.

       I am the Chief Medical Officer and the Regional Head Administrator for Region JQ, which includes the
jurisdictions of New York, New Jersey, Puerto Rico, and the US Virgin Islands. We are the office that represents
the Office of the Surgeon General in each of the jurisdictions.  It is a pleasure to be with you this morning and to
moderate this session on asthma. As a pediatrician, I have been involved with the management of asthma in children
for many years. Just minutes ago, I was talking to the Secretary of Health of Puerto Rico, Dr. Feliciano. We went to
school together, and when we were training in pediatrics., asthma was not the disease it is today. People use to say,
"Nobody dies of asthma."  We were very cautious with our use of steroids in those days.  Not anymore.

       People do die of asthma today.  Children do die of asthma. For reasons that are not well known, asthma
prevalence is on the rise. It's increasing tremendously, and even though we have some insights to the triggers that
cause asthma, we still don't know much. Every year I spend two weeks in a small hospital in the mountains of
Puerto Rico, where the air is pure and there is no contamination.  In that center, the number one cause of outpatient
visits to the clinic is asthma. We don't know much, but we do know enough to institute treatment and prevention.

       You may have heard yesterday that there was a pilot project here in this Region regarding joint intervention
by HRSA and EPA in four community health centers. The goal was to determine whether the two interventions
together reduced hospitalizations, emergency department visits, and lost school days. Not only do we need to know
more about the disease, but we also need to institute more programs to allow providers to have all of the medications
and systems of care available to treat this very common disease, which is causing great costs in terms of suffering
and in terms of economics.

       I was not able to be here yesterday because I was attending a health disparities meeting at the University of
Medicine and Dentistry in New Jersey. Although the topic of the meeting was health disparities, not asthma, at least
one-third of the speakers mentioned asthma as one disparity that we need to tackle.  I am sure that you are aware
that Secretary Shelala recently unveiled the Asthma Initiative, which spells out the Agency's plan for the next few
years in terms of management of asthma, in terms of research, in terms of services, and in terms of support to
communities that are dealing with this condition. So I am very hopeful that even though asthma is not included in the
six priorities of the  Surgeon General for elimination of disparities, it will be there in our plans and in our efforts to
reduce disparities. Asthma continues to take a significant toll on lower socioeconomic classes, in communities where
children live in crowded conditions with less than optimal sanitation. This is an area where we have much work to do.
                                              93

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PUBLIC HEALTH PROGRAMS PANEL


MONICA SWEENEY, MB,, MPH
Medical Director, Bedford Stuyvesant Family Health Center

       Dr. Monica Sweeney served as the moderator for the Public Health Programs Panel. Presenters for this
panel included Meyer Kattan, MD, FRCP, Pat Kinney, ScD, and David Evans, PhD.


PATRICK L. KINNEY, ScD
Division of Environmental Health Sciences, Joseph A. Mailman School of Public Health at
Columbia University

    What are the Outdoor and Indoor Environmental Triggers and Interventions against Them?

    In early 2000, the Committee published the report, Clearing the Air: Asthma and Indoor Air Exposures.

•   Full text of the report is available on the web at:
    http://books.nap.edu/catalog/9610.html
•   Also available is Indoor Allergens: Assessing and Controlling Adverse Health Effects (TOM, 1993) at:
    http://www.nap.edu/catalog/2056.hrml

PRIMARY GOALS OF THE REPORT
•   To provide the scientific and technical basis for communications to the public on the health impacts of indoor
    pollutants related to asthma, and mitigation and prevention strategies to reduce these pollutants.

•   To help determine what research is needed hi these areas.


REPORT CONTENT
•   The definition of asthma and the characteristics of its clinical presentation
•   Asthma pathophysiology
•   Patterns of asthma morbidity and mortality
•   Indoor air exposures and the exacerbation and development of asthma
•   The effectiveness of indoor environmental interventions in lowering exposures and lessening symptoms
•   The scientific literature on general exposures in indoor environments
•   The impact of building ventilation and particle air cleaning on exposures and health
                                              94

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 INDOOR EXPOSURES ADDRESSED IN THE REPORT
 Biological
 Animals                                        Fungi or molds
    Cats                                       Houseplants
    Dogs                                       Pollen
    Rodents
    Cows and horses
    Domestic birds
 Cockroaches
 House dust mites
 Endotoxins

 Chemical
 NC-2, NOx (nitrogen oxides)
 Pesticides
 Ozone*
 Particulate matter with sources other than ETS*
 SO2, SOX (sulfur oxides)*

 CONCLUSIONS — ASTHMA DEVELOPMENT

 Sufficient Evidence of a Causal Relationship
 House dust mites

 Sufficient Evidence of an Association
 ETS (in preschootaged children)

 Limited or Suggestive Evidence of an Association
 Cockroach (in preschool-aged children); RSV

 CONCLUSIONS — ASTHMA EXACERBATION
Infectious agents
   Rhinovirus
   Respiratory syncytial vims (RSV)
   Chlamydia trachomatis
   Chlamydia pneumoniae
   Mycoplasma pneumoniae
Plasticizers
Volatile organic compounds
Formaldehyde
Fragrances
Environmental tobacco smoke (ETS)
Sufficient Evidence of a Causal Relationship
Cat
Cockroach

Sufficient Evidence of an Association
Dog
Fungi or molds

Limited or Suggestive Evidence of an Association
Domestic birds
Chlamydia pneumoniae
Mycoplasma pneumoniae
RSV
    House dust mites
    ETS (in preschool-aged children)
    Rhinovirus
    NC>2, NOx (high-level exposure)
    ETS (in school-aged and older children, and
       adults)
    Formaldehyde
    Fragrances
                                             95

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EFFECTIVENESS OF ENVIRONMENTAL INTERVENTIONS
•   There are numerous mitigation strategies that are or may be effective in reducing exposure to potentially
    problematic agents, but only a small number for which there is presently evidence that proper implementation
    results in an improvement of symptoms or lung function in asthmatics.
•   Almost no research has been conducted on the effectiveness of environmental interventions on the primary
    prevention of asthma.
•   However, the absence of evidence does not mean an absence of effect.

CHARACTERISTICS OF EFFECTIVE INTERVENTIONS
Allergens:
•   Effective strategies consist of integrated approaches consistently applied over time.  The two primary
    components of an integrated approach are (1) removal or cleaning of allergen reservoirs and (2) control of new
    sources of exposure.
•   Source removalr-where it is possible—is typically the most effective control measure and may be the only
    effective measure for some agents.

Chemical Agents:
•   Avoidance of exposure through source removal, substitution, or emission reduction is usually the most successful
    approach.

RESEARCH NEEDS AND  RECOMMENDATIONS
•   Elucidation  of the factors  that determine the predisposition to sensitivity to certain agents and lead to the
    development of asthma.
•   Studies that examine the  role of prenatal exposure and whether the age of first exposure influences the
    development of sensitization.
•   Evaluation of the interaction of different environmental exposures with genetic susceptibilities.
•   Examination of the feasibility and generahzability of intervention programs on target populations, especially the
    poor and inner city residents
•   Connection between the  scientific literature regarding asthma  and the scientific  literature regarding the
    characteristics of healthy indoor environments (e.g., building design and operation; sources, transport, control
    methods, and exposures to indoor pollutants).
 MEYER RATTAN, MD, ERCP
 Professor of Pediatrics, Mount Sinai School of Medicine

 Asthma Management Guidelines
                                               96

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 Asthma Management Guidelines

           Meyer Kattan, MD
          Professor of Pediatrics
      Mount Sinai School of Medicine
 Asthma Management Guidelines

Mechanism to assess and improve quality of
  care
Asthma Management Guidelines

•  Development
•  Dissemination
•  Implementation at local level
•  Assessment
  - Do they change practice or improve outcome ?
          NIH Guidelines

• Pharmacological management
• Environmental control
• Assessment
• Education/Partnership
          NIH Guidelines

  Pharmacological management
  - Long-term suppression of inflammation
  - Medications
    • Long-term controllers
    • Quick-relief
  — Step-wise approach
    • mild intermittent
    • mild, moderate, severe persistent
          NIH Guidelines
  Environmental control
  - Allergens
  - Irritants
                                        97

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               NIH Guidelines

      Assessment
      - Regular follow-up visits
      - Self-monitoring
      - Specialist referral when achieving control is
        difficult
          NIH Guidelines

Education/Partnership
 - Tailored to needs of individual patient
 - Address patient concerns
 - Agree upon the goals of therapy
 - Written action plan
Medical caro is inlluenced by the medical systom. the provider, and the patient.
                                                                     Quality of Care and Asthma

                                                                               White      Black     Hispanic
                                                                  AI before
                                                                  admission

                                                                  New home
                                                                  nebulizer
             22%
             21%
9%
7%
6%
2%
                                                             Disparity in Care: White is mare likely to receive ami-inflammatory medication and home nebulizer
                                                             than Slack and Hispanic patients.
Quality of Care and Asthma
Private Public Self-Pay
AI before 17% 6% 7%
admission
New home 11% 6% 9%
nebulizer
Disparity in Care: Private patients are more likely to receive anti-inflammatory drug and
home nebulizer than public and self*pay patients.




§ 30-
s.
10
0-

Medication Use








1




i •! ,
• n
: 1 I

None B-agonist only SteroiuVcromolyn
The Nalnnal inner City Asthma Study and Diaz's study snowed mat Tor moderately ill asthmatic
patients they are still receiving mare 8-agonist.
                                                       98

-------
       Clinical Practice Guidelines
         (McFadden etal. Am J Med 1995:651)


     Length of ED stay reduced by 50 minutes
     ICU admissions reduced by 41%
     24-hour relapse rate reduced by 66%
                                         Telephone Intervention
                                             Made and Kept Appointment
        Asthma Information Quiz
     Adult caretaker -
     Child -
85%
73%
In « NrJeral Inner CKyAShra StudtfNCICAS). me level of ashma information of me
rtssaalcss was seed
                                        Asthma Problem-solving
                                                 (5 Vignettes)
 Response

Helpful

Unhelpful

Undesirable
Score

3.57
0.65
1.68
                                                        However, information mayn't translate into appropriate behavior or practice
        Asthma Self-Management


      Bernard-Bonin 1995
      — Meta-analysis of pediatric education programs
        failed to identify a positive benefit on asthma
        admissions, doctor visits or school absenteeism
                                       Asthma Self-Management

                                     Cochrane Review (11 RCT) - Gibson 1999
                                     - Limited asthma education (information only)
                                       does not improve health outcomes in adults
                                                        Random Control Trill (RCT)
                                                   99

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    Asthma Self-Management   •

•  Cochrane Review (25 RCT) - Gibson 1999
  - Selt-monitoring by peak flow or symptoms
  - regular medical follow-up
  - written action plan
improves outcome in adults
 Barriers to Effective Patient-
   Provider Communication

Lack of provider time
Lack of trained staff for patient education
Patient does not volunteer symptoms
Low patient expectations of asthma
outcome
            Conclusions

  Asthma care does not meet current
  guidelines
  There is little evidence that guidelines affect
  patient outcome and strategies for
  implementation of guidelines are needed
  Interventions are more likely to succeed if
  they change both provider and patient
  behavior
                                         100

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   The Impact of Community Pediatricians'
  Use of Communication Skills and Patient
    Education on Family Management of  •
                  Asthma

  Noreen M. Clark, Molly Gong, David Evans, Martin
       Hurwitz, Dieter Roloff. Lois A. Maiman,
               Robert B. Mellins
  Educating Providers to Care for
        Patients with Asthma

n What are the problems with the current state
  of asthma care?
a Can asthma care be improved by education
  for providers?
n How can we reach providers with
  interventions to improve care?
      What are the problems?


  1.  Many primary care providers do not
  follow current guidelines for diagnosing and
  treating asthma
  >-Asthma often goes undiagnosed in young
   children.
  t-The persistence and severity of asthma is
   often assessed incorrectly or not at all.
  t- Many patients with persistent asthma
   (Sx>2/wk) are not treated with  inhaled Al
   medicines.
   Several Studies to Support these
                 Findings

a In our screening of NYC school children, 55% with
 asthma Sx had persistent asthma, but 33% of these had
 not been diagnosed, and 18% were taking no medicine.
n Doerschung found that physicians scored 46% on a test
 of how to assess severity using EPR-II guidelines.
a In a California HMO, Jatulis found only 47% of patients
 with moderate asthma and 57% with severe asthma were
 using inhaled Al medicines.
a Among children with persistent asthma in our study, only
 48% were taking Al drugs -18% steroids and 39%
 cromolyn.                       \
  Benefits of Al agents to control

                 asthma

a Donahue reviewed HMO records for 17,000 patients
  with asthma and calculated the relative risk (RR) for
  hospitalization for patients taking inhaled steroids,
  cromolyn, and beta agonists.
a RR = 0.5 (CI,  0.4-0.6) for patients using steroids.
a RR = 0.8 (CI,  0.7-0.9) for patients using cromolyn.
a Increasing beta agonist use and hospitalization were
  related.
a Steroid-associated protection was strongest among
  patients who took the largest amounts of beta
  agonists.
                                              101
      What are the Problems?


a 2.  Many providers do not use effective
  communication and education methods to:
  t> Establish a partnership with the patient to
   control asthma.
  > Persuade families to use Al therapy.
  > Enhance patient compliance and
   self-management skills.

-------
   Two studies by Korsch show the link
  between communication and compliance

a Only 24% of mothers expressed their main
  concern about their child's health and only 35% •
  stated their expectations during urgent care visits.
a When mothers believed MDs did not understand
  their main concern, satisfaction dropped from
  83% to 32%.
'a 53% of highly satisfied mothers complied
  completely with the MD's advice, but only 17% of
  highly dissatisfied mothers did so.
     Asthma self-management
         programs for adults

a Gibson's meta-analysis of 22 randomized
  trials of self-management education vs.
  usual care in adults found that education
  reduced:
  t> hospitalizations (OR=.57)
  P. ED visits (OR=.71)
  > unscheduled doctor visits (OR=.57)
  >days off work or school (OR=.55)
  > nocturnal asthma (OR=.53)
     Asthma Self-Management
          programs in adults

  The key characteristics of effective
  programs were:
  >teaching patients to self-monitor by symptoms
   or peak flow
  > giving patients a written action plan that allows
   self-adjustment of medicines
  >offering/providing regular appointments to
   review the progress of care
  This suggests that patient education is most
  effective when linked closely to clinical care.
 Can education for providers change prescribing,
    communication, and education practices?

n A review of 50 controlled trials of traditional CME programs found
 that most improved MD performance, but only 8/18 improved
 patient health outcomes (Davis 1999}
n Consultation alliances between asthma specialists and primary
 care providers have so far not been successful (Griffiths, pc).
a In a 'diffusion model, respected physicians who completed a
 self-study program influenced their peers' treatment of arthritis
 (Stross, 1985)
a Adademic detailing has shown mixed results in asthma
 management better quality of life (Blacksb'en-Hirsch 2000); better
 prescribing and review of inhaler technique (Feder 1995); no
 change in patient outcomes (O'Connor, ATS 2000)
 Can education for providers change prescribing,
    communication and education practices?

 B A problem-based learning model for small
  groups of pediatricians has shown increased
  use of inhaled steroids and written plans,
  and reductions in urgent care use by  .
  patients (Zeits, Wheeler).
 a Several studies have shown that interactive
  models that include demonstration and
  practice of new skills can change care for
  patients with asthma (Evans, Clark)
                                               102
   Logistics and Components of
              Intervention

  Two dinner seminars lasting 2.5 hours each,
  held one week apart
  Brief lectures on clinical practice from
  respected asthma specialists
  Videotapes showing effective
  communication behavior and key  patient
  education messages

-------
  Unique Features of Seminars

 Interactive Methods
 Discussion of cases to clarity
 decision-making
 Practice of communication skills between
 sessions
 Use of self-observations and evaluation to
 improve skills
       Communication skills

a Show nonverbal attentiveness
a Give nonverbal encouragement
a Give verbal praise for things done well
a Maintain interactive conversation: use
  open-ended questions, clear language, and
  analogies
a Find out underlying worries and concerns
o Give specific reassuring information
      Communication skills

Tailor medication schedule to the family's
routine
Reach agreement on a short-term goal
Review the long-term therapeutic plan
Help the family to use criteria for making
decisions about asthma management
   MD/Family Partnership Study
               Results
i Intervention pediatricians, compared with controls,
 reported:
  > Increased use of written plans for patients to
   adjust medications when symptoms changed
  >Increased use of AI therapy in both study
   and new patients
  > More attention to patient fears of new
   medicines
  > Less time for new patient visit - 23 vs. 27
   minutes
MD/Family Partnership study results

Intervention patients, compared with controls,
reported:
s-Increased use of written plans
*-MD was more reassuring
>-MD asked more often about family
  asthma management at home
>MD was more likely to set goal for
  child to be fully active
                                        103
 MD/Family Partnership study results

a Record review showed, for children using A! therapy
 at followup but not at baseline, that intervention
 children had:
 > Reduced ED visits
 > Reduced hospitalizations
 > Reduced days with symptoms
 E> Reduced scheduled and followup
   visits to the MD

-------
MD/Family Partnership study results


Record review showed that at two-year follow up:
> Intervention group children had fewer
  hospitalizations than controls
  (0.3 vs. .10; P=.03)
> Among children with 3+ ED visits at
  baseline, intervention group children had
  fewer ED visits than controls (.29 vs .47;
  P=.03)
 How can physician participation in
     educational interventions be
               obtained?
a In CMC study, organizational sponsorship
 resulted in 100% participation
a In our current school study, 25% of
 physicians invited attended the MD/Family
 program.
m Academic detailing in physician's office
 probably has an intermediate rate
a Which models would work in New York
 City?
                                         104

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 STATE REPORTS ON DRAFT STATE ASTHMA ACTION PLANS

 Associate Professor of Pediatrics, Mount Sinai School of Medicine

 Dr. Luder served as the moderator for the State Reports on Draft State Asthma Action Plans. Presenters
 included Kevin Thomas McNally, MPH; Judith LeComb and Chris Kus, MD, MPH; Naydamar Perez de Otero,
 MD, MPH; and Audria Thomas, MD.


 NEW JERSEY BREAKOUT SESSION
 New Jersey Department of Health and Senior Services

        Seventy-Jive New Jersey participants attended the breakout session. Ten representatives of the
federal agencies were also present. Shirley Smith, Regional MCH Nurse Consultant for the HRSA New
 York Field Office served as  the facilitator. Kevin McNally, Program Manager, Child and Adolescent
 Health Program, served as the head of the NJ Team. Participants were given a list of current asthma-
 related initiatives in New Jersey, developed by the NJ State Team. The session, a free discussion among
participants, is summarized  below.

 EXISTING SERVICES/RESOURCES
 o   NJDHSS - Special Child Health Services Registry and case management follow-up
 •   NJDHSS — Reimbursement for asthma/CF medications for uninsured — no residency or immigration time
    limits
 •   NJDHSS/Office of Minority Health - Asthma Resource Directory - statewide and 3 cities: Newark, New
    Brunswick, Trenton
 •   NJDept of Education -law and guidelines support student use of asthma meds hi school
 •   NJ KidCare - up to 350% of poverty; covers all asthma treatments
 •   NJDEP - air quality monitoring; research on ozone and asthma
 •   Statewide and regional pediatric asthma coalitions - public/private partnerships
•   Asthma treatment programs at federally qualified health centers
•   "Asthma Busters" - Ironbound Community Corp. (Newark)
•   Passaic Pediatric Asthma  Reduction Project (RWJ  Foundation funds)
•   Tools for Schools — American Lung Association (ALA)
•   Summer camp for kids with asthma (ALA) - full for 2000; spread word now for 2001
•   Rutgers U / NJ Cooperative Extension / USDA - Indoor air quality education program - videotapes,
    curriculum, and booklets
•   Health care for homele ss project
•   Peer education training programs for community residents

WEBSITES
>   NJ Resource Directory - www.state.nlus/healthycommiss/oirMasthma
>   Asthma & Allergy Network/Mothers of Asthmatics - www.aanma.org
^   Asthma home environment curriculum — www.montana.edu/wwwcxair
                                            105

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PROBLEMS IDENTIFIED
•   Coverage for treatment of new and undocumented immigrants and their children
•   Payment for medicines for uninsured
•   Cost of some equipment and home environmental treatments not covered by insurance
».   Lack of knowledge, even among providers, of the resources available
•   Most educational literature is in English, and at a high reading level

RECOMMENDATIONS
•   Expand data collection activities - state asthma registry (?)
 •   Map health data on asthma with data on environmental & demographic risk factors
•   Send information about SCHS Registry, case  management, and medication assistance to all primary care
    providers
•   Develop a Statewide Resource Directory both  in print and  on internet. Set up regional coalitions linked to
    statewide coalition
•   Train nurses to be asthma educators (diabetes educator model)
•   Develop programs of home visiting by nurses and environmental assessors
•   Seek funding for medical equipment for uninsured
•   Seek assistance from pharmaceutical industry
•   Train community health promoters in more communities
•   Train community residents to do home environmental assessments
•   Promote asthma education in schools, esp. Open Airways
•   Screen children in school
•   Include child care and Head Start centers in programs; esp.  focus on early childhood education initiatives in
    Abbott Districts and encourage links with Head Start
•   Insurers to require providers to have a written asthma plan - tie to payment
•   Create a procedure code for asthma teaching
•   Develop and distribute model action plan and risk assessment tool
•   Take a multi-pronged approach - recognize diversity of NJ population
    — include communities within communities
    — include faith-based organizations
    — include pharmacists
    — involve landlords and tenants and their organizations

RECOMMENDATIONS TO FEDERAL AGENCIES
•   EPA - continued/increased funding of research into effects of ozone and particulates on persons with asthma
•   HUD  - more involvement in addressing environmental triggers related to housing (for ex., remediating water
    damage leading to mold growth)
•   HFCA—expand definition of allowable "treatment" for asthma to incorporate environmental treatments, such as
    pillow/mattress covers and insect control. Cover home assessments for asthma triggers (precedent: Medicaid
    coverage of home inspections for lead hazards and limited abatement)
•   NIH - develop educational materials with lower reading levels, in languages other than English, and mat can be
    used by children
•   Any/all federal agencies — support community-based education and intervention programs
                                               106

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 NEW YORK STATE BREAKOUT SESSION
 New York State Department of Health

 Over 100 people attended the session from all over New York State, representing federal, state and city
 government, non-profit organizations, academic institutions, foundations, managed care organizations and
 health care providers including hospitals and community health centers. Dr. Tom Matte, of the New York
 Academy of Medicine, served as facilitator.  Dr. Ken Spitalny, the Assistant Commissioner for Health
 Initiatives of New York State participated. Drs. Chris Kus and Chris Maylahn, leaders of the New York State
 Team, also actively participated. Judith Lescomb, the State's Asthma Coordinator, served as the recorder.

 MEDICAL PROVIDER CARE
     4  Care should be systematized and tools/devices made available
     4  Improve provider training:  simplify, address cultural issues, distribute (NIH) guidelines
     4  ED visits should be seen as an opportunity
     *  Make clinical resources available for the uninsured or underinsured patients
     4  Share best practices
        Successes:
        4  Columbia University's project to train providers and all clinical staff regarding asthma
        *      NYS Medicaid reimbursement for spacers will increase  7/1/00

 ENVIRONMENTAL INTERVENTIONS/ISSUES
 4   Incinerators
 •   Location of schools
 *   Truck routes
 *   Housing
 *   Food additives
 4   Trigger controls
 *   Environmental justice
     Successes:
        *  Healthy Schools Network is improving indoor air quality in schools through New York State
        4  New York City cockroach intervention program in public housing

 PUBLIC/COMMUNITY OUTREACH AND EDUCATION
  4  Awareness
•  4  Culturally appropriate materials/resources
  4  Addressing social issues
     Successes:
     4     Train Head Start staff
     4     Open Airways Program for schools

 PARTNERSHIPS/COALITIONS
 4   Broaden partnerships, include housing, environmental justice, and private sector
 4   Web site as clearinghouse to share information
 4   Form partnerships to address social issues/poverty
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    Success:
    *      Medical centers partnering with schools and with visiting nurses service

SURVEILLANCE AND DATA
*  Access and use of services
*  Completeness of data

CASE MANAGEMENT
*  Case management has been shown to be effective for managing high-risk patients
*  Case management requires a treatment plan, targeted education to modify health behaviors, outreach to assure
   care plan is enacted, and trust between the provider and patient.
*  There are three basic models: provider based, trained asthma counselors, and the community worker approach.
   Each model needs to be judged on its effectiveness and capacity to be brought to scale
*  Case management effectiveness is related to illness severity
   Successes:
    4   Case management program in school-based health clinics (Cortland, NY)
     * National Cooperative Inner-city Asthma Study (NCICAS)

*  Recommendation I
   The New York State Department of Health to develop a strategic plan that includes concrete action steps
   reflecting the multi-factorial nature of the epidemic as described throughout the Summit The plan will provide
    direction for the goal set by Governor Pataki to reduce asthma-related ED visits by 50% over a 5-year period
   through education and adherence to effective asthma prevention and management.

*   Recommendation n
    Systemize the vast resources already targeted to asthma in New York State so that they are fully and more
    efficiently used.  Some resources are hardly known; others are underutilized.  Participants shared tiieir best
   practices and success stories and clearly began the establishment of a system to network on the local level.

4   Recommendation HI
    Environmental issues are too large to be handled hi a clinical setting. It was suggested that local coalitions need
    to be formed to deal with such issues as track routes and open incinerators, particularly in poor neighborhoods.
    Another idea generated was to broaden the seven existing regional coalitions in New York State to include
    organizations such as the Legal Aid Society.

*   Recommendation IV
    Educational material should be targeted to providers and material developed for the  encounter rooms where
    physicians are treating patients, e.g., laminated pocket treatment cards, checklists, wall charts. These techniques
    should be accompanied by wider distribution of the NTH guidelines and skill training (not just CME).

4   Recommendation VI
    Through consensus and support,  ensure that asthma efforts include a case management approach.
                                               108

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COMMONWEALTH OF PUERTO RICO BREAKOUT SESSION
Department of Health, Puerto Rico

Dr. Guillermo R. Otero-Herrmann, Director of the HRSA Puerto Rico Office served as facilitator for the
group.  The session's twenty-seven participants represented the academic community, parents, community
organizations, and key federal agencies including HCFA, CDC, ATSDR, and EPA. The leader for the PR
Asthma Team was Dr. Naydamar Perez Otero, Director of the Children -with Special Health Care Needs
(CSHCN) Program in PRDOH. Other key officials-were: Dr. Carmen Feliciano, Puerto Rico Secretary of
Health, Dr. Gilberto Cardona, Regional Health Administrator -Region II, and Dr. Roberto Varela, MCH
Director PRDOH. Dr. Madeline Reyes, MCH Consultant for the CSHCN Program, was recorder for the
group.

RECOMMENDATIONS AND ACTION STEPS
    *t» The Puerto Rico Asthma Coalition presented a draft of the work plan developed prior to the conference. The
       Coalition basically presented a work plan addressing the needs of the children. The group recommended that
       the plan be modified to incorporate the needs of the adult population too. The group incorporated the
       recommendation immediately.

    *J* The incorporation of a CME requirement on asthma diagnosis and management for all health care providers
       requesting a license to practice hi Puerto Rico was recommended. It was decided that the Secretary of
       Health would issue an executive order regarding this issue.

    *J* It was decided that the management of the environmental triggers on asthma should also be included in the
       educational topics to patients and providers.

    *> The local asthma initiative called  The Colors of Asthma, currently focused mainly on children living in the
       service area of the University Pediatric Hospital, should be expanded to other areas of the island. The
       federally funded  community and migrant health centers might easily adopt the program if the Asthma
       Coalition provides training to the health educators and nurses.

    »> The materials used in the local program are very useful and might be shared with other communities with a
       large concentration  of Hispanics.  Approval from the pharmaceutical  company  that  sponsored the
       development of the materials will be required.

    *»» There is  a need for educational material that is culturally sensitive to the Hispanic and Puerto Rican
       communities. These resources in Spanish should be included at federally sponsored Asthma Clearing House
       and/or Resource  Centers.

    *> There is a need to develop a profile of the asthmatic population of PR. The identification of accurate data to
       accomplish mis task will be essential.

    •J* There is lack of knowledge of the situation  of the island among the various federal agencies serving the
       jurisdiction.

    »I* The Puerto Rico Department of Health will be sponsoring an Island-wide Asthma Summit in October, 2000.
       There is a significant need for federal support.
                                              109

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       Puerto Rico should prepare a regular publication about ttife general  situation of the territory so that the
       federal agencies might have a better understanding of the island and respond adequately to the needs of the
       population.
U.S.VIRGIN ISLANDS BREAKOUT SESSION
Department of Health, US Virgin Islands

Claude Colimon, Regional Program Consultant for Minority Health, Region II-Public Health Service, served
as facilitator of the session. Dr. Mavis Matthew, Assistant Commissioner of Health, andDrAudria Thomas,
Director, Office of Community Health, and other members of the Virgin Island Asthma Team participated in
the breakout session. Parent, public health, nursing, hospital, and other federal agencies participated.

The draft plan "To Enhance Asthma Prevention Health Care Services" was presented to the participants by the VI
Asthma Team. Prior to the neeting, the VI Team was able to collect current information on existing data and
activities on Asthma to serve as the basis for the development of their Asthma Action Plan.

CURRENT INFORMATION ON ASTHMA
Three main sources of information exist to provide data on the morbidity and mortality associated with asthma. The
primary source of mortality information is the Department of Health's Bureau of Health Statistics. This Bureau has
the capacity to aggregate deaths due to asthma based on age and island of residence, and establish mortality trends
over time. The second source of data is the hospital's data system. Data is available by age, sex, length of hospital
stay, and average cost. The Pediatric Ward also generates monthly reports identifying the total number of admissions
due to asthma, and indicates transfer of patients for off-island care. The third source of information is the MCH and
CSHCN Program, which conducts surveys of the special needs population to determine the prevalence of disease
within the sample population.

Additional information that we would  like to collect are data from schools/school nurses regarding the number of
children and adolescents diagnosed with asthma, and the frequency of asthmatic attacks while in the school setting.

ASTHMA HEALTH SERVICES  AND PREVENTION ACTIVITIES
In the Virgin Islands, there is a collective effort to serve children and adults with asthma. Primary care clinics are
offered at MCH & CSHCN Clinics, 330  funded Community Health Centers,  and Community Health Clinics. A
monthly Pulmonology Clinic is held by the MCH & CSHCN Programs on both St Thomas and St Croix. Allergy
Clinics are conducted by the Department of Health on St. Thomas.

The American Lung Association is active hi  leading the community-based effort to provide asthma prevention
education. The ALA's "School Open Airways" provides a series of classes for children with asthma to instruct about
what asthma is, warning signs, how to  use a peak flow meter, and proper use of their medications. The Department
of Health distributes materials such as "Partners in Asthma Care" published by NIH for nurses and " Teach Your
Patients about Asthma" for physicians. A weekly asthma education class is offered at the Governor Juan F. Luis
Hospital on St Croix. The ALA sponsors an annual "Asthma Camp" to provide educational information for patients
and providers.
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OUTDOOR AND ENVIRONMENTAL TRIGGERS
The ALA in partnership with the VI EPA received funding to address indoor air quality and maintenance issues. This
indoor air quality program assessed the environment and made recommendations to improve the quality of air, e.g.
maintenance of air conditioning filters, nature of air conditioning units, etc.

TARGET GROUPS
On-going asthma prevention activities are targeted at children. The "School Open Airways" program reaches
students from kindergarten to sixth grade. The Asthma Summer Camp is conducted for youngsters six to twelve
years of age. Children with special health care needs ages 0-21 years of age are also a target group. Translation
services are available for non-English speaking populations.

ACCESS
There are several public health programs, which promote access to quality comprehensive health care including
asthma diagnosis, treatment, and management. The MCH & CSHCN Program is the lead agency in the VI charged
with providing comprehensive, coordinated, culturally sensitive, family-centered care. The age group served by this
program is 0-21 years of age. The Chronic Disease Program serves the adult population.

PUBLIC & PRIVATE PARTNERSHIPS
There is  collaboration and  cooperation among the following agencies: Department of Health, Department of
Education, Environmental Protection Agency, Governor Juan Luis Hospital & Medical Center (StCroix), Roy L.
Schneider Hospital (St. Thomas), and the ALA. Collaboration with the American Association of Retired Persons and
Mothers of Asthmatics Association are needed linkages.

RECOMMENDATIONS AND ACTION STEPS
     >  During the next 6-18 months, the clinical data collection system will be expanded to include community
        health clinics, health department clinics, and hospitals. This will enable the VI to have a more comprehensive
       picture of asthma medical management During this time a plan to work with private providers to get
        information on their asthma population will utilize collaboration with the WIC and Immunization Programs. A
       programmer will be needed to work on adding the questions to the systems. Geo-coding will be part of this
        effort.
     >  Improving compliance with preventative medical management will target the emergency rooms at the two
        hospitals and then move into the clinical practice areas.
     >  Prevention activities will be discussed with the schools, via school nurses, physical education teachers, and
        coaches. A chapter of the ALA will be started on St. Croix since there is already one on St. Thomas. This
       will include the "Open Airways" curriculum.
     J*  Monitoring and improving air quality in government buildings and schools was discussed as  an important
        component of the plan.
     ^"  The VI Team will need technical assistance from  CDC, HRSA, and AAP as they move forward.
                                             Ill

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                                  CREDITS
   PLANNING COMMITTEE FOR REGION H ASTHMA SUMMIT
           CO-CHAIRS: MARGARET TENG LEE.        ELISABETH LUDER
        Health Resources Services Administration        Mount Sinai Medical School
Anna Castro
NYC Department Of Health

Carmen Ramos
NYC Department of Health

Christopher Rus
NYS Department of Health

Christopher Maylahn
NYS Department of Health

Dana Siverd
HRSA-New York

Debbie Halper
United Hospital Fund

Gilberto Cardona
PHS-Region 2

Kevin McNally
NJ Department of Health & Senior Services

Louise Cohen
NYC Department of Health

Mary Medina
Mt. Sinai Medical Center
Maureen O'Neil
EPA-Region 2

Mavis Matthew
USVI Department of Health

Meyer Kattan
Mt. Sinai Medical Center

Nadamer Otero-Perez
PR Department of PR

Nilsa Gutierrez
HCFA-Region 2

Rachel Chaput
EPA-Region 2

Roberta Holder-Mosley
HRSA-New York

Sabine Eustache
CHCANYS

Shawanda Patterson
Clinical Directors Network

Tom Matte
CDC
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DATE:
 EPA INDOOR ENVIRONMENTS PROGRAM




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