".I am the Surgeon Geneml of the heterosexuals and the homosexuals, of the young and the old, of the moml or the immoml, the married and the unmarrkd. Z don't have the luxury of deciding which side Z want to be on." -C. Everett Koop Z7ze ubshingron Posf 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 8 HUMAN SERVICES Pubk Health Servcce Health Resources and Services Administration Bureau of Health Care Dellvery and Assistance Division of Maternal and Chrld Health In conjunction wtth &i The Children's Hospital of Philadelphia Apnl 6th-9th. 1987 DHHS Pubkatron 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." i'ke Surgeon General5 Workshop on Children with HIV Infection and Their Families was supported by grants from l7ze 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. Rob13 J. Mum, wt 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 . . . Ill PLANNING COMMITTEE Planning Committee for the Surgeon Generals Workshop on Children with HIV Infection and Their Families WORKSHOP CHAIRPERSON Stanley A. Plotkin, M.D. Division of Infectious Diseases Children's Hospital of Philadelphia WORKSHOP DIRECTOR John Hutchings, M.D. 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. Hiigartner, 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, MS., 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 Cinzburg, 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 V ChiMren k 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 vi WORKSHOP PROGRAM Monday, April 6, 1987 Plenary Session The Children's Hospital of Philadelphia Greetings John Hutchings, M.D. Assistant Director Division of Maternal and Child Health Depattment of Health and Human Services Rockville, MD Presiding Welcome Keynote and Charge 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 Global Epidemiology Thomas C. Quinn. M.D., M.S. National Institute of Allergy and Infectious Dwases Associate Professor of Medwine Johns Hopkins University, Baltimore, MD The Human Immunodeficiency Virus Wade P. Parks. M.D., Ph.D. Director of Pediatrics Division of Immunology and Infectious Disease University of Miami School of Medicme Miami, FL Immunology of HIV Infection Arthur J. Ammann. M.D. Director, Collaborative Research Genentech. Inc. South San Francwo, CA Epidemiology and Transmission of Pediatric Infection Martha F. Rogers. M.D. AIDS Program/Center for Infectious Diseases Centers for Disease Control Atlanta. GA Approaches to Prevention of HIV Infection Walter R. Dowdle, Ph.D. Acting Deputy Director (AIDS) Centers for Disease Control Atlanta. GA Natural History of HIV Infection I Natural History of HIV InfectIon II Gwendolyn B. Scott. M.D. Associate Professor of Pcdiatrlcs Head, Division of Infectious Disease and Immunology University of Miami School of MedIcme Miami. FL James Oleske. M.D. Associate Professor Department of Pcduxrlcs College of Medicine and Dentistry of New Jersey Newark. NJ vii Tuesday, April 7, 1987 HIV Transmitted by Blood Products Supporwe Treatment or Pediatric HIV Infection DN~ Abuse and Women's Medical Issues Educatmn to Prevent HIV Infection Management of Children with HIV Infection Vaccine Strategies A Mother's Viewpoint Wednesday, April 8, 1987 Individual Work Group Recommendations Surgeon General's Response Plenary Session Continued Margaret W. Hileanner. M.D. Professor of PedLtrics Director, Division of Pediatric Hematology/Oncology New York Hospital-Cornell Medical Center New York, NY Arye Rubenstein. M.D. Professor of Pediatrics. Mwrobmlogy and Immunolog\ Albert Einstein College of Medicine of Yeshiva Un~verstt) Bronx. NY Constance Et. Wofsy. M.D. Co-Director, AIDS Activities Principal Investigator. Prqect AWARE San Francisco General Hospital San Francisco, CA Karolynn Siegel. Ph.D. Director of Research Department of Social Work Memorial Sloan Kettermg Cancer Center New York, NY Harold M. Ginzburg. M.D.. J.D.. M.P.H Chief, Epidemiology Branch AIDS Program Nauonal Institute of Allergy and Infectious D~reares 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 . . . vu1 CONTENTS INTRODUCTION ............................................ SURGEON GENERALS KEYNOTE ADDRESS. ................. EXCERPTS FROM PRESENTATIONS. ......................... The Global Epidemiology of the Acquired Immunodeticiency Syndrome.. .......................................... The Human Immunodeficiency Virus. ...................... The Immunology of Pediatric AIDS. ....................... Transmission of Human Immunodeficiency Virus Infection in the United States. ........................................ Approaches to Prevention of HIV Infection. ................. Natural History of HIV Infection in Children I. .............. Natural History of HIV Infection II. ....................... HIV Transmitted by Blood Products. ....................... Supportive Care and Treatment of Pediatric AIDS. ........... Intravenous Drug Abuse and Women's Medical Issues. ........ Education to Prevent HIV Infection. ....................... Legal Issues Surrounding Medical Care, Treatment, and Research of Children. .................................. Management of the Child with HIV Infection: Implications for Service Delivery. ..................................... Current Developments and Future Prospects for AIDS Vaccines. A Mother's Viewpoint. ................................... WORK GROUP RECOMMENDATIONS. ....................... RESPONSE OF THE SURGEON GENERAL. .................... APPENDICES.. ............................................. A-Panicipants ......................................... B-Work Group Leaders and Recorders. .................... C-Guidelines for Management of HIV. .................... D-Selected Readings. ................................... E-CDC Classification System; Education and Foster Care for Children Infected with HIV ............................ 7 11 13 17 20 22 24 26 29 32 3.5 38 41 44 47 51 71 76 76 86 87 88 91 ix 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.