“I am the Surgeon General of the heterosexuals and the homosexuals, of
the young and the old, of the moral or the immoral, the married and the
unmarried. I don’t have the luxury of deciding which side I want to be on.”

—C. Everett Koop
The Washington Post Health Magazine
24 March 1987
Report of The
surgeon General’s Workshop
on
Children With HIV Infection
And Their Families

 

Presented by the

U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES
Public Health Service

Health Resources and Services Administration

Bureau of Health Care Delivery and Assistance

Division of Maternal and Child Heaith

_ In conjunction with
(241 The Children's Hospital of Philadelphia

April 6th-9th, 1987

DHHS Publication No. HRS-D-MC 87-1
This book is dedicated to the memory of Samuel Jared Kushnick in testimony
of how much “his life has counted” and how well “his voice is heard.”

The Surgeon General's Workshop on
Children with HIV Infection and Their Families
was supported by grants from
The Division of Maternal and Child Health— Public Health Service
U.S. Department of Health and Human Services

This report was edited by
Dr. Benjamin K. Silverman
The Children’s Hospital of Philadelphia

and

Mr. Anthony Waddell
Allied Medical Consultants, Washington, D.C.

The photograph of the AIDS virus used in the logo was taken by Mr. Robert J. Munn, Department of Pathology,
School of Medicine, University of California, Davis, CA 95616 :
PREFACE

This Surgeon General’s Workshop on Children with HIV Infection and Their
Families provides an opportunity to summarize the current knowledge about AIDS
(Acquired Immunodeficiency Syndrome) in children and to make recommenda-
tions about future directions in research, prevention, and amelioration of the effects
of pediatric AIDS. Surgeon General’s Workshops, of which this is the fifth, have
been useful vehicles for assembling experts to improve the health of mothers and
children. Representatives of major professional and voluntary organizations and
from various components of the Department of Health and Human Services insure
not only a comprehensive coverage of the subject but also a network to disseminate
and implement the recommendations.

In the early eighties we realized that children could develop AIDS when it
became apparent that this then very mysterious disease could be transmitted by
blood transfusions and the administration of blood products to treat hemophilia.
Initially it was difficult to distinguish this entity from the rare and puzzling congen-
ital immunodeficiency diseases in children.

By 1984 the numbers of children with AIDS had begun to escalate, espe-
cially in New York City, Newark, and Miami. The Division of Maternal and
Child Health first held an ad hoc meeting to try to delineate the nature of the
problem in NYC where infants were occupying acute care hospital beds unneces-
sarily because no alternative living arrangements were available. DMCH joined
other departmental groups in cosponsoring the first National Meeting on Pedi-
atric AIDS in November, 1984. Attendees at this meeting agreed that AIDS did
occur in children, that the number of children involved was undercounted in the
CDC surveillance system, and that infected infants and children and their fami-
lies were subject to discrimination and sometimes barred from basic services.
Participants expressed concern about seemingly insoluble problems, although some
told of initial efforts to solve them.

DMCH, the New York State Health Department, and the Albert Einstein
College of Medicine cosponsored a second National Pediatric AIDS Meeting held
in March, 1986. A larger group—predominantly of physicians but also of other
health workers, child welfare workers, and educators—exchanged information
about the clinical spectrum and treatment efforts. A new confidence resulted from
the increasing knowledge about the etiology and transmission of AIDS. We recog-
nized that many generic solutions were applicable to HIV infection. Many could
remember when most infections could be managed even without vaccines and
antibiotics. It has been especially heartening to hear how the State Health Depart-
ment, the Hemophilia Treatment Center, and the local school had worked together
in Swansea, Massachusetts, to retain a boy with AIDS in school in a manner that
evoked the best instincts of his classmates and their families.

This, then, is actually the third national meeting on pediatric AIDS, and is
conducted as a Surgeon General’s Workshop to bring our best efforts to bear against
this new disease.

C. Everett Koop, M.D., Sc.D.
Surgeon General

iii
PLANNING COMMITTEE

Planning Committee for the Surgeon General’s Workshop on Children with HIV
Infection and Their Families

WORKSHOP Stanley A. Plotkin, M.D.
CHAIRPERSON Division of Infectious Diseases
Children’s Hospital of Philadelphia
WORKSHOP John Hutchings, M.D.
DIRECTOR Division of Maternal and Child Health
U.S. Department of Health and Human
Services
COMMITTEE MEMBERS Organizational Representatives

Phillip Brunell, M.D.
American Academy of Pediatrics

Margaret W. Hilgartner, M.D.
National Hemophilia Foundation

LaVohn E. Josten, Ph.D., R.N.
American Nurses Association

Solbritt Murphy, M.D.
Association of Maternal and Child Health
Directors

Richard H. Schwarz, M.D.
American College of Obstetricians and
Gynecologists

Public and Private Representatives

Eunice Diaz, M.S., M.P.H.

Director, Health Promotion and
Community Affairs

White Medical Center, Los Angeles

Anna Garcia, M.S.W.
University of Miami School of Medicine

James Oleske, M.D.
College of Medicine and Dentistry of
New Jersey
iv
Public and Private Representatives

Wade P. Parks, M.D., Ph.D.
University of Miami School of Medicine

Gloria Rodriguez, M.S.W.
New Jersey State Department of Health

Arye Rubinstein, M.D.
The Albert Einstein College of Medicine

Gwendolyn B. Scott, M.D.
University of Miami School of Medicine

Diane W. Wara, M.D.
University of California-San Francisco
Medical School

Federal Representatives
Department of Health and Human Services

C. Everett Koop, M.D., D.Sc.
Surgeon General
Public Health Service

Georgia Buggs
Division of Maternal and Child Health

Sander G. Genser, M.D., M.P.H.
Alcohol, Drug Abuse, and Mental Health
Administration

Harold Ginzburg, M.D., J.D., M.P.H.
National Institute of Allergy and Infectious
Diseases/AIDS Program

Harry Haverkos, M.D.
National Institute of Drug Abuse

Martha F. Rogers, M.D.
Centers for Disease Control

Anne Willoughby, M.D.
National Institute of Child Health and
Human Development
vi

Children’s Hospital of Philadelphia
Representatives

Stephen D. Barbour, M.D., Ph.D.
Division of Infectious Diseases

Shirley Bonnem
Vice President

Stephen W. Nicholas, M.D.
Department of Pediatrics

Benjamin K. Silverman, M.D.
Department of Emergency Medicine
WORKSHOP PROGRAM

Monday, April 6, 1987

Greetings

Presiding

Welcome

Keynote and Charge

Global Epidemiology

The Human [mmunodeficiency
Virus

Immunology of HIV Infection

Epidemiology and Transmission
of Pediatric Infection

Approaches to Prevention
of HIV Infection

Natural History of HIV
Infection f

Natural History of HIV
Infection II

Plenary Session
The Children’s Hospital of Philadelphia

John Hutchings, M.D.

Assistant Director

Division of Maternal and Child Health
Department of Health and Human Services
Rockville, MD

Stanley A. Plotkin, M.D.
Director, Division of Infectious Diseases
The Children’s Hospital of Philadelphia

Edmond F. Notebaert, President and Chief Executive Officer
The Children’s Hospital Foundation
The Children's Hospital of Philadelphia

Robert Zimmerman, M.P.H.
Acting Deputy Secretary for Public Health Programs
Pennsylvania State Department of Health

Harriett Williams
Deputy Commissioner for Community Health Services
City of Philadelphia

C. Everett Koop. M.D.. Sc.D.

Surgeon General

Public Health Service

Department of Health and Human Services

Thomas C. Quinn, M.D., M.S.

National Institute of Allergy and Infectious Diseases
Associate Professor of Medicine

Johns Hopkins University, Baltimore, MD

Wade P. Parks, M.D., Ph.D.

Director of Pediatrics

Division of Immunology and Infectious Disease
University of Miami School of Medicine
Miami, FL

Arthur J. Ammann, M.D.
Director, Collaborative Research
Genentech, Inc.

South San Francisco, CA

Martha F. Rogers. M.D.

AIDS Program/Center for Infectious Diseases
Centers for Disease Control

Atlanta, GA

Walter R. Dowdle, Ph.D.
Acting Deputy Director (AIDS)
Centers for Disease Control
Atlanta, GA

Gwendolyn B. Scott, M.D.

Associate Professor of Pediatrics

Head, Division of Infectious Disease and Immunology
University of Miami School of Medicine

Miami, FL

James Oleske. M.D.

Associate Professor

Department of Pediatrics

College of Medicine and Dentistry of New Jersey

Newark, NJ .
Vil
Tuesday, April 7, 1987

HIV Transmitted by
Blood Products

Supportive Treatment of
Pediatric HIV Infection

Drug Abuse and Women’s
Medica! Issues

Education to Prevent
HIV Infection

Legal Issues

Management of Children
with HIV Infection

Vaccine Strategies

A Mother's Viewpoint

Wednesday, April 8, 1987

Individual Work Group
Recommendations

Surgeon General's
Response

Vili

Plenary Session Continued

Margaret W. Hilgartner, M.D.

Professor of Pediatrics

Director, Division of Pediatric Hematology/Oncology
New York Hospital-Cornell Medical Center

New York, NY

Arye Rubenstein, M.D.

Professor of Pediatrics. Microbiology and Immunology
Albert Einstein College of Medicine of Yeshiva University
Bronx, NY

Constance B. Wofsy, M.D.
Co-Director, AIDS Activities

Principal Investigator. Project AWARE
San Francisco General Hospital

San Francisco, CA

Karolynn Siegel. Ph.D.

Director of Research

Department of Social Work

Memorial Sloan Kettering Cancer Center
New York, NY

Harold M. Ginzburg. M.D.. 3.D.. M.P.H.

Chief, Epidemiology Branch

AIDS Program

National Institute of Allergy and Infectious Diseases
Bethesda, MD

Mary Boland, R.N, M.S.N.. C.P.N.P.
Director, AIDS Program

Children’s Hospital of New Jersey
Newark, NJ

Gerald V. Quinnan, Jr.. M.D.

Division of Virology

Office of Biologics Research and Review
Center for Drugs and Biologics

Food and Drug Administration

Bethesda, MD

Helen G. Kushnick
General Management Corporation
Los Angeles, CA

Individual Work Groups Begin

Plenary Session: Work Groups’
Summation and Presentation

C. Everett Koop, M.D.. Sc.D.

Close
CONTENTS

INTRODUCTION ..... 00.02 c cee ee eee, 1
SURGEON GENERAL’S KEYNOTE ADDRESS..................
EXCERPTS FROM PRESENTATIONS.......................05. 7
The Global Epidemiology of the Acquired Immunodeficiency
Syndrome .. 0... cece ccc cece evens 7
The Human Immunodeficiency Virus....................... 11
The Immunology of Pediatric AIDS........................ 13
Transmission of Human Immunodeficiency Virus Infection in the
United States... 2... cece eens 17
Approaches to Prevention of HIV Infection.................. 20
Natural History of HIV Infection in Children I............... 22
Natural History of HIV Infection H........................ 24
HIV Transmitted by Blood Products........................ 26
Supportive Care and Treatment of Pediatric AIDS............ 29
Intravenous Drug Abuse and Women’s Medical Issues......... 32
Education to Prevent HIV Infection........................ 35
Legal Issues Surrounding Medical Care, Treatment, and
Research of Children... 0.00.0... 00000. c cece eee eeee 38
Management of the Child with HIV Infection: Implications for
Service Delivery.......0.0.000.0000 000 ccc ccc ccc cece. 4]
Current Developments and Future Prospects for AIDS Vaccines. 44
A Mother’s Viewpoint...........00.00 00000000 cece cece eee 47
WORK GROUP RECOMMENDATIONS........................ 51
RESPONSE OF THE SURGEON GENERAL..................... 71
APPENDICES . 2... c cece ee 76
A—Participants ..... 0.00. e eee, 76
B—Work Group Leaders and Recorders..................... 86
C—Guidelines for Management of HIV..................... 87
D—Selected Readings..........0...0.00000 0 ccc cece cee eee 88
E—CDC Classification System; Education and Foster Care for
Children Infected with HIV .............00.0.0.00 000005. 9]

ix
oe
38,
N OO, vf
AL hei FR

COMMONWEALTH OF PENNSYLVANIA
OFFICE OF THE GOVERNOR
HARRISBURG

GREETINGS:

As Governor of the Commonwealth of Pennsylvania,
it gives me great pleasure to extend greetings to all
those gathered for the AIDS workshop being held by
United States Surgeon General, Dr. C. Everett Koop, M.D.
at The Children's Hospital of Philadelphia.

I applaud all of you for the dedicated and
professional efforts you have taken to improve and
strengthen pediatric health care.

Best wishes for a productive and meaningful
workshop.

  

Robert P. Casey
Governor