".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.

INTRODUCTION
AIDS in children has been a sensational but little understood issue. Fear and
ignorance have impeded efforts to understand and control the AIDS epidemic
in adults, and this has been even more true for children. Children acquire AIDS
as a consequence of adult behavior, but they nevertheless have shared general
public opprobrium frequently cast on affected patients.
As of 30 March 1987, a cumulative total of 471 children nationwide met the
strict criteria established by the Centers for Disease Control (CDC) for Acquired
Immunodeficiency Syndrome (AIDS) in children. An untold additional number,
perhaps two to three times more, are infected with the Human Immunodeficiency
Virus (HIV) but do not meet the CDC criteria. It is not generally appreciated
that AIDS is only one of the more severe manifestations of infection with HIV.
Other children infected with HIV may fall anywhere on a spectrum from being
completely asymptomatic through suffering growth and developmental retarda-
tion to having multisystem disease known as AIDS-Related Complex (ARC)
involving blood, skin, brain, heart, kidneys, and other organs.
Both future opportunities for control of HIV infection and the possibilities for
future disaster lie in the area of heterosexually transmitted infections in adults
and their consequences to children. At present, pediatric infections-other than
those acquired previously through HIV contaminated blood products-stem largely
from mothers who themselves are intravenous drug users or whose partners either
abuse drugs or are bisexual. If the virus continues to spread through these groups,
there inevitably will be more heterosexual infections and more transmission to
infants, both within and without the drug using and bisexual sectors.
The idea for this conference arose from our perception that the attention of
the nation needed to be focused on prevention of HIV infection in children and
on the difficulties of caring for those children already infected. At the same time,
we learned that the Surgeon General was considering convening a workshop specif-
ically to deal with issues arising from pediatric AIDS. Accordingly, a series of
meetings took place in the summer and fall of 1986 to plan for a conference.
In the subsequent months, approximately 200 people were invited to a closed
conference, known as the "Surgeon General's Workshop on Children with HIV
Infection and Their Families."
We made a deliberate effort to convene not only clinical and research physi-
cians, but other types of health providers, clergy, economists, educators, media
representatives, and parents. Due attention was given to ethnic and geographical
representation.
The workshop took place at Children's Hospital of Philadelphia on 6-8 April,
1987. The fifteen papers surveying what is known in the field were presented
in plenary session. Following are abstracts of the papers presented in the plenary
sessions and summaries of the recommendations from the Work Groups.
1

The results set out in these pages exemplify a peculiarly American way of
problem-solving: to bring together the informed and the interested, to give each
a voice, and to form a consensus which avoids extremes.
We believe that these recommendations are both sound and urgent. If we can
learn how to deal humanely with HIV-infected children and to prevent new mothers
and children from becoming infected, there is still a chance of stopping the AIDS
epidemic. For this purpose, the energies of the American people will need to
be mobilized in a "moral equivalent of war" to fight against the spread of HIV.
Stanley A. Plotkin, M.D.
Director, Division of Infectious Diseases
The Children's Hospital of Philadelphia
Professor of Pediatrics and Microbiology
University of Pennsylvania
Professor, The Wistar Institute

EXCERPT FROM KEYNOTE ADDRESS
C. Everett Koop, M.D., D.Sc.
Surgeon General, Public Health Service
Nearly five years ago I came to Philadelphia to stand before a similar group
of concerned Americans and share my concerns about handicapped children and
their families. My opening remarks at that Surgeon General's Workshop noted
that our task would not be easy. We were to consider very complex issues, such
as the emotional, the moral, the medical, the technological, the social, the psycho-
logical, and the financial issues associated with the care for handicapped children.
I also mentioned the awesome challenge of putting a dollar value on a human life.
I wish it were not so, but those remarks are just as appropriate today when
we consider yet another problem of major proportion to cope with: the conse-
quences of Human Immunodeficiency Virus (HIV) infection in children and adoles-
cents. Five years ago little was known about the nature and extent of AIDS. And
although we suspected that children would become involved, it was then far from
reality.
A great deal has changed since that time, as you are well aware. Many of you
in this audience have contributed to our expanding knowledge about AIDS or
are in some way associated with issues related to this deadly disease. As a result
you are familiar with its history. As of the beginning of April 1987, there were
among children under 13 years of age 471 reported cases that meet the Centers
for Disease Control (CDC) criteria for pediatric AIDS and 139 reported cases
among adolescents aged 13 to 19. The nearly 500 cases among young children
is double the number of cases reported only a year ago. Sixty percent of those
children have already died.
Unfortunately, we expect the number of infected children to continue to increase
dramatically. By 1991, the Public Health Service estimates that 3,000 children
will have suffered from the disease and virtually all will die. As frightening as
this may sound, the number is undoubtedly underestimated. We know that HIV
infection in children has manifestations that are legion; full-blown CDCdefurition
AIDS is only part of the story. As many as 2,000 additional children are reported
to have symptoms of the infection, but do not fit the specific diagnostic criteria.
It has been found that congenitally acquired HIV infection may affect the infant's
central nervous system (CNS) and thus may lead to alterations in growth and
development-signs and symptoms not previously identified with AIDS.
With recognition of the wide clinical spectrum of HIV infection in children,
the CDC has developed a more detailed and exhaustive classification system for
the asymptomatic as well as the symptomatic child, the immunologically
compromised child, and the children with neurological disease, lung disease,
secondary cancer, cardiopathy , and nephropathy We know this disease has many
presentations in children and, as our knowledge expands, our public health surveil-
lance will continue to reflect this knowledge.
The development of blood-screening procedures and methods of heat treating
blood-factor products virtually eliminated the risk of new pediatric AIDS cases
from blood and blood products. However, some children had earlier acquired
3

AIDS from contaminated blood. These children and their families also need our
attention. The burden suffered by these children, some of whom may also have
a severe chronic illness like hemophilia, is enormous.
About two-thirds of pediatric AIDS cases are the result of transmission from
infected mother to child. While there are other modes of transmission of infec-
tion to children and adolescents-sexual abuse, drug abuse, and sexual
intercourse-our major focus in pediatric AIDS must be on transmission from
the infected pregnant woman. Most of these mothers are intravenous drug abusers
or sex partners of drug abusers or of bisexual men. As the virus continues its
spread among the general population, however, a woman's lack of direct involve-
ment with these high risk behaviors will be no guarantee against her infection
and transmission to her fetus.
Present information suggests that up to 65 % of babies born to infected mothers
will contract the disease. The outlook for these children is almost certain death.
Currently, there are almost no programs that provide coordinated, community-
based care for pediatric HIV-infected patients. There is a lack of foster care place-
ment for HIV-infected infants and children. Pediatric units are overwhelmed by
the social and medical demands of both ill and well children with HIV infection.
There are not enough hospital personnel to provide and coordinate multi-
disciplinary inpatient, outpatient, community care, and just plain hugging and
playing with these children. Pediatric house staff in some institutions where the
prevalence of AIDS is high are concerned that their neonatal experience is skewed
because of the large numbers of neonates with AIDS.
Many of these children also suffer abandonment by the mother and society.
Because of the stigma of AIDS, there are fewer foster homes open to these chil-
dren. In fact there have been virtually impenetrable barriers between them and
a whole variety of social and public health services. Our infants and children
with this dread disease must be afforded a normal and dignified life. They must
be nurtured, helped to grow and develop, allowed to interact with peers, attend
school, and encouraged to enjoy and participate in all activities of childhood,
despite a shortened life span.
The AIDS epidemic is imposing severe social and economic burdens on many
communities. It will take combined resources from all levels of government and
the private sector to meet the increasing costs: of care for an expanding patient
population; of educational efforts to reduce high risk behaviors; of maintaining
an effective research effort for improved prevention, treatment, and cure; of the
social support to juveniles with AIDS and their families to secure the most normal
and dignified existence possible.
So far I have been focussing on the issues related to children with AIDS and
the heartfelt concern we have for these children. Although we have learned a
great deal about AIDS in a short time, our knowledge is nevertheless extremely
limited. Prudent judgment must continue to guide us. Under all circumstances
we must remain committed to providing humane and dignified care, and we must
be willing to bear the responsibilities and costs during the short, troubled lives
of these children.
Let us look at this profound tragedy from yet another perspective. Why is there
pediatric AIDS? The overwhelming majority of children with congenital AIDS
have this disease because of parental prenatal behaviors. While AIDS can afflict
children at all levels of society, it is occurring disproportionately in those who
have the least capacity and resources to cope. Over half of all babies born with
AIDS are black with one or both parents infected with AIDS. Another 25 percent
4

of all babies born with AIDS are Hispanic.
What we are seeing in reference to AIDS, therefore, is more tragic evidence
of high-risk pregnancies and births which are most likely to occur among black
women. . . who are poor. . . who are not ready for the world of work. . . who may
not even have a high school diploma. . .and who do not have ready access to
good prenatal and perinatal health care.
This population of young women produces a disproportionate number of low-
birth-weight babies. Life for these babies is a struggle from "day one". . . and many
of them never make it to "day two."
This is additional catastrophic news for the black community, already under
great economic and social stress. And it's also more evidence of the apparent
inability of American society in general to make much headway in helping these
young women deal with their own sexuality and their own destinies.
Maternal infection with the HIV is preventable and so too is congenitally
acquired AIDS. Assembled here today is a group of national experts from the
sciences, the professional community, the government, and the community at-
large to address a public health problem of great importance to our nation and
to all people of the world. President Reagan has recently called AlDS "Public
Health Enemy No. 1." As the Surgeon General of the United States Public Health
Service, I am asking you to join with the President to bring all of our skill, exper-
tise, and resolve to focus attention on the broad range of health concerns related
to children suffering from AIDS.
Your task for the next several days will be to develop recommendations for
a national strategy for reducing the tremendous burden of this devastating condi-
tion, especially among our children. I ask that your recommendations give specific
attention to the development of an expanded knowledge base, the health resources
and services necessary to address the AIDS problem, and the social strategies
necessary to assure that our knowledge and resources are best applied in the service
of better health for our children.
The recommendations that will emerge from this Surgeon General's Workshop
can change attitudes by utilizing calmness, confidence, and clarity in what we
say. We must be precise in the use of words lest we exacerbate fear which can
only lead to discrimination against children.
In dealing with the specific problems of pediatric AIDS, we need guidelines
for our communities to bring together local officials, health professionals,
educators, religious leaders, and parents to develop an interdisciplinary, moral,
and just approach for the battle against AIDS.
I wish you well and look forward to the fruits of your labors.
You really have the opportunity to make a major contribution to our under-
standing of pediatric AIDS, and also to the alleviation of some of the burden borne
by children with HIV infection and their families.
5

clrY OF    PHILADELPHIA
                                                   w WILSON GCOOE
                                                           UL\.,.P
April 6, 1987
CHILDREN WITH HIV INFECTION (AIDS)
AND TREIR FAMILIES WORKSHOP
Philadelphia, PA
TO ALL IN ATTENDANCE:
   As Mayor of Philadelphia,  I am privileged to extend
my best wishes on this most significant workshop, addressing
the issue of  "Children with HIV Infection (AIDS) and Their
Families.'
   This gathering is a special one, charged with the
important task of formulating recommendations to the Surgeon
General of the United States, C. Everett Koop, H-D., in
helping to set a national policy regarding this growing
problem.  May all of you in attendance here today be re-
newed and encouraged in your efforts through the diverse
and informative Workshop sessions.
   I express my admiration for the commitment and deter-
mination of all participants, and I offer my deepest hopes
that this workshop will be an unparalleled success in achiev-
ing its goals and objectives.
Sincerely,
g!2mi2Lm
W. WILSON GOODE
Mayor
WWG:hs

EXCERPTS FROM PRESENTATIONS
THE GLOBAL EPIDEMIOLOGY OF THE
ACQUIRED IMMUNODEFICIENCY SYNDROME
Thomas C. Quinn, M.D.
Introduction
Since its initial recognition in 1981, the acquired immunodeficiency syndrome
(AIDS) has become a global pandemic. As of 1 March 1987, nearly 42,000 cases
had been reported from over 90 countries. Thirty-two thousand cases have been
reported in the United States, an additional 3,000 cases in the other countries
of the Americas, 4,500 cases in Europe, and 2,600 cases officially reported in
Africa-with several thousand suspected and many more unrecognized in that
continent alone. Australia and New Zealand had reported 404 cases for Oceania,
and 103 cases had been reported from 10 Asian countries. Because of under-
reporting, however, these numbers do not reflect accurately the true incidence
of AIDS worldwide. The World Health Organization estimates that there are over
100,000 cases of AIDS throughout the world, with a large majority of these cases
occurring in North America and Africa. An additional 300,000-500,000 cases
of AIDS-related conditions (ARC) and an estimated 5-10 million people world-
wide have already been infected with the virus that causes AIDS, the human
immunodeficiency virus (HIV).
Figure 1.
S-10 million
This latter group of infected people represents the human reservoir of this infec-
tion from which future cases of AIDS will emerge. In the United States, for
example, it is estimated that by 1991 over 270,000 cases of AIDS will have devel-
oped from the present pool of l-2 million HIV-infected individuals. In that year,
over 54,000 deaths will occur from AIDS, and AIDS will be ranked as one of
the leading causes of premature death in our society. For other areas, particu-
larly Central Africa, where already lo%-15 % of the general population has been
infected by the AIDS virus, these numbers will be even greater. With conserva-
tive estimates of 20%-30% of HIV-infected people developing AIDS within a
7

five year period, and with an 80% mortality rate two years from time of diag-
nosis of AIDS, AJDS has clearly established itself as one of the most serious
epidemics of the century.
AIDSischaracterizedbytheunusualappearance of life-threatening oppomulistic
infections or malignancies occurring in an individual who has a severe depres-
sion of the cell-mediated immune system. Under this clinical case definition,
31,834 patients (including 31,381 adults and 453 children) have been reported
as AIDS cases to the CDC as of 2 March 1987. Of these patients, 18,835 (57%
of adults and 61% of children) are known to have died, including over 80% of
those patients diagnosed before January 1985. Since the initial reports of AIDS
in early 1981, the number of cases reported for each 6-month period continues
to increase. However, the increases are not exponential, as evidenced by the length-
ening period of time required to double the number of cases.
Cases have now been reported from all 50 States, the District of Columbia,
and the 4 U.S. territories. Fifty-three percent of all the cases have been repotted
from New York and California, and the incidence rate of AIDS for New York
City and San Francisco is approximately 100 cases/lOO,OOO population.
Adult Patients
Ninety-seven percent of all adult AIDS patients can be placed in a group that
suggests the possible means of disease acquisition. Homosexual or bisexual men
not known to have used intravenous drugs represent 65% of ah reported cases,
or 70% of the male cases. Heterosexual Iv drug users comprise 17% of all cases,
including 15 % of the male cases and 5 1 I of the female cases. Homosexual or
bisexual men who have used IV drugs comprise 8% of all cases. Persons with
hemophilia or coagulation disorders who have received Factor 8 or Factor 9
concentrates represent 1% of all cases. Heterosexual partners of persons with
AIDS or at risk for AIDS represent 4 % of all cases, including 2 % of the males
and 27 % of the females. The proportion of female AIDS cases in this risk group
increased significantly between 1982 and 1986 from 12 % to 27%, a trend which
may prove to be a good marker for following patterns in heterosexual transmis-
sion. This last category of heterosexual partners also includes those who, without
other identifiable risk, were born in countries in which heterosexual transmis-
sion is believed to play a major role, such as in Haiti and Africa. Recipients of
transfused blood or blood components comprise 2 % of all cases, which represents
1 X of male cases and 10% of the female. For 3% of AIDS patients, the possible
means of disease acquisition is undetermined, in these cases primarily due to lack
of epidemiologic investigations before death.
Table 1. Distriburion of Eriologic Risk FQC~OU in AIDS Patients in the U.S.A.
                     Male (93%)      Female (7%)       To~Q~
Homosexual or bisexual men (Non-IVDU)*   70%             -            65%
Homosexual or bisexual men (IVDU)       8%             -             8%
Heterosexual IVDU                 15%          51%           17%
Heterosexual partners of persons with AIDS   2%          27%            4%
Coagulation disorders                1%         >I%            1%
Other transfused patients               1%          10%            2%
Undetermined risk factor              3%          11%            3%
                          100%         100%           100%
*(IVDU = Intravenous Drug User) (Total 31,381 patients at March 2, 1987)
8

Pediatric Patients
The percentages displayed in Table 2 have remained fairly constant in the weekly
CDC reports. An additional undetermined number of children with evidence of
HIV-infection are not included in these numbers because they do not fit the CDC
definition for AIDS. These children are defined as having AIDS-related complex
(ARC), not a reportable syndrome at this time. Many, if not all, will progress
to AIDS.
Table 2. Demographic and Clinical Distribution of Pediatric AIDS Pm.ents < 13 years)
AGE:                 ETIOLOGIC RISK FACTORS:
(a) C 5 years (88%)       (a) Parent with AIDS or in high-risk category (80%)
(b) > 5 years (12%)       (b) Blood transfusion (12%)
RACE:              (c) Concentrate for coagulation disorders (5%)
(a) Black (57%)          (d) Not known (3%)
(b) Hispanic (22%)        CLINICAL DIAGNOSIS:
(c) white (20%)         (a) Pneumocystis carinii pneumonia (52%)
SEX:               (b) Other opportunistic infection (47%)
(a) Male (55%)          (c) Kaposi's sarcoma (1%)
(b) Female (45%)
(Total 453 patients at 2 March 1987)
Pediatric patients have been reported from 29 States, the District of Columbia,
and Puerto Rico, with 72% of the pediatric patients reported in Florida, New
Jersey, and New York. Since the majority of AIDS cases in children are the results
of perinatal transmission from the mother, trends in female AIDS cases may also
predict future trends for AIDS in children.
Other Countries
The epidemiology of AIDS in other countries of the Americas, such as Canada
and Brazil, and in Europe is quite similar to that described for the United States.
The male-to-female ratio is 13 : 1, and there is a predominance of cases occurring
among homosexual or bisexual men and intravenous drug users. However, in
tropical countries such as in Africa and Haiti, the male-to-female ratio is 1: 1 and
the majority of cases are identified among heterosexually active individuals who
deny the above risk factors. Currently, an accurate assessment of the exact number
of cases and risk factors for transmission among those cases is not entirely feasible,
due to these developing countries' lack of resources to support an accurate surveil-
lance system. Serologic surveys for HIV infection and preliminary AIDS surveil-
lance studies using modified case definition, however, have provided useful
information regarding the spread of HIV infection and AIDS in these areas.
In areas where international scientific teams have been monitoring AIDS, it
is estimated that the annual incidence of AIDS is approximately 200 cases/1OO,CKlO
population, a rate twice that observed presently in New York City or San Fran-
cisco. The male-to-female ratio of AIDS cases in Central Africa is approximately
1: 1, and the sex and age-specific distribution of AIDS cases reflects patterns Seen
with other sexually transmitted diseases in which the incidence and morbidity
rates are higher among younger women and older men. Serologic studies have
indicated prevalence rates of HIV antibody ranging from 5%-88% for blood
donors, 27 %-88 % among female prostitutes, and 2 %-lo% among pregnant
women of Central Africa. Longitudinal data on HIV seroprevalence have shown
a rapid rise in HIV antibodies among prostitutes in Kenya from 4% in 1980 to
59 % in 1986. These data demonstrate the rapid spread of HIV infection in a high
9

risk heterosexually active group in Africa. Exposure to infected blood transfu-
sions and blood-contaminated needles used for medicinal purposes further amplify
the transmission of HIV among the general population of these tropical areas.
Consequently, the entire Central African population has become at risk, and some
natural history studies have already documented there a 1% annual seroconversion
rate in a general heterosexual population.
As a result of heterosexual transmission, African women of child-bearing age
are exposed to HIV. As in U.S. studies, maternal HIV infection appears to be
strongly associated with seropositivity among infants in Africa. In one city of
Central Africa, approximately 8 9% of all infants are born to seropositive mothers.
While it is unclear what percent of these children will acquire HIV infection perina-
tally, it is evident that a substantial number of newborn children are presently
being infected with HIV. Children in developing countries are also at risk for
acquiring HIV infection from unscreened blood transfusions for the anemia
associated with malaria, malnutrition, and other endemic diseases, as well as from
exposure to blood-contaminated needles and syringes used for medicinal purposes.
Thus, it can be anticipated from these data that HIV infection will have a dramatic
effect on the general health of these children and potentially on the safety and
efficacy of childhood vaccinations.
New Viruses
This problem in Africa is now being exacerbated by the appearance of addi-
tional human retroviruses, referred to as HTLV-IV or LAV-2, or HIV-2, some
of which may cause symptomatic disease, including AIDS. Infection with these
retroviruses is rapidly spreading throughout West Africa, primarily by heterosexual
transmission, blood transfusions, exposure to blood contaminated needles and
syringes, and perinatally from mother to infant. Diagnostic assays for HIV-2 are
not entirely reliable for detection of infection with these other human retroviruses,
and new methods need to be developed rapidly to help control the spread of these
retroviruses. Additional studies on the relationship of these human retroviruses
to HIV, including genomic and protein comparisons, as well as on the patho-
genicity and natural histdry studies, will help facilitate the development of safe
and effective vaccines against these human retroviruses.
With an estimated 5-10 million people already infected with HIV, and with
projections of l-2 million cases of AIDS occurring worldwide over the next several
years, it is evident that AIDS has clearly become established as a global pandemic,
presenting an unprecedented health problem for our society. Unless control efforts
are successful, HIV infection will continue to spread rapidly by sexual, parenteral,
and perinatal modes of transmission. Until a safe and effective vaccine is avail-
able, prevention of HIV transmission must rely primarily on educational programs,
modification of sexual practices, screening of blood transfusions, and intensive
counseling of seropositive individuals. Faced with one of the greatest epidemics
of our lifetime, we must make prevention and control of HIV infection an inter-
national public health priority, requiring the full commitment of the necessary
political, financial, and professional resources of all countries.
10

THE HUMAN IMMUNODEFICIENCY VIRUS
Wade Parks, M.D., Ph.D.
The virus etiologically associated with AIDS is a member of the Family
Retroviridae. A defining characteristic of this family of viruses is that they have
a dipfoid linear single-stranded RNA genome that is surrounded by a protein
capsid. The capsid is surrounded by a lipoprotein envelope. This envelope or
coat is covered with viral glycoproteins that are involved in viral entry into suscep-
tible cells and is a major target of the host immune system. A unique marker
of the Family Retroviridae is the reverse transcriptase which is a part of the virion
and which catabolizes the synthesis of DNA from RNA and is thus an RNA-
dependent DNA polymerase. The AIDS virus is a member of one of the sub-
families of Retroviridae.
Figure 1.
The subfamily Lentivirinae that contains the AIDS retrovirus includes a number
of unglulate viruses associated with chronic, persistent infections in their natural
hosts. These include Equine Infectious Anemia (EIA) or "swamp fever" described
first in 1904, Visna-the prototypic lentivirus which causes a neurologic disease
of sheep, and Caprine Arthritis and Encephalitis Virus (CAEV). The morphology
of lentivirus virions is relatively unique with an elongated, bar-shaped nucleoid.
Lentiviruses have a slightly larger genome than most retroviruses, and a larger
and more highly variable vii-ion external glycoprotein than other retroviruses.
Thus far, the reverse transcriptase differs only slightly, preferring a different
divalent cation-magnesium-over manganese.
11

The etiologic agent of AIDS was originally termed the Lymphadenopathy-
Associated Virus or LAV by Luc Montagnier and his co-workers at the Institut
Pasteur in Paris. When Robert Gallo and his colleagues at the National Cancer
Institute repeatedly isolated virus from AIDS patients, they referred to their isolates
as Human T-Lymphotropic Virus type III, or HTLV-III. Gallo and his group
had already described an HTLV-I and HTLV-II, human-infecting members of
the Family Retroviridae, subfamily oncovirinae. Hence, the etiologic agent of
AIDS was called HTLV-III in this country and LAV in Europe and frequently
abbreviated HTLV-IWLAV. More recently, a group of virologists have recom-
mended the term, Human Immunodeficiency Virus (HIV), for the AIDS virus.
The retrovirus of AIDS has a structure that is similar to other retroviruses.
This means that the linearized form can be depicted as bound on either end by
two non-coding regions known as long terminal repeats (LTRs). Moving 5' to
3', the gene order is gag, pal, and env between the LTRs. The gag gene encodes
for structural proteins of the virus, including the ~24 molecule, which is the most
abundant polypeptide of the virion and which is very important as a diagnostic
marker in infected patients. The pal gene encodes for the reverse transcriptase,
a remarkable polyfunctional molecule which subserves proteolytic, catalytic, and
integration activities within newly infected cells. The env gene encodes for the
virion surface proteins, which are glycosylated, hence glycoproteins. The trans-
membrane protein is known as p4 1E and is the major component of newer recom-
binant diagnostic seroassays for detecting infection. The external glycoprotein
is known as gp120. The gp120 contains the region that forms the attachment to
the viral target, the CD4 molecule that characterizes certain T-lymphocytes. This
high affinity ligand interaction is the mechanism by which the virus can infect
cells. Antibodies to the gp120 can neutralize viral infectivity. The gp120 has
multiple regions that are highly variable in genetic sequence; these regions differ
from one virus to another. Thus, the virus varies markedly, enabling the virus
to avoid elimination by the host's immune system.
Finally, the AIDS retrovirus has some additional genetic features that demon-
strate its amazing versatility. Within the virus there are a number of open reading
frames that have the capacity to encode for proteins. Two of these have been
described: tat and arr. Roth are products of spliced mRNAs and appear to subserve
important biological roles for viral replication. The rut gene especially codes for
a protein that binds to a very specific region of the 3-LTR and then enhances
transcription. Since the protein can act in trans, it is called the tram activator
(tat). The tat gene product serves to turbocharge the replication of the AIDS
retroviruses. Hence, in the short time that an infected lymphocyte may undergo
cell division in response to a given antigenic stimulus, gut and its related proteins
allow maximal production of the retrovirus and thereby increase the probability
for successful virus infection of other lymphocytes.
In general, the retrovirus of AIDS is a highly adapted pathogen. Its genetic
functions subserve two essential prerequisites for any virus's survival, replica-
tion and avoiding immune elimination. A full knowledge of the molecular
mechanisms of viral replication and their relevance may be central to the control
of the AIDS epidemic.
12

THE IMMUNOLOGY OF PEDIATRIC AIDS
Arthur J. Ammann, MD.
The pathogenesis of AIDS, felt to be a result of HIV infection, is best studied
in infants and children, since they represent a more pristine host. Undoubtedly,
HIV infection and its resultant clinical manifestations are a consequence of infection
with this retrovirus as well as the interaction between HIV and other preexisting
or subsequent infectious agents. Studies of infants suggest that HIV infection alone
may result in impairment of the immune system and secondary susceptibility to
opportunistic infection. Even in the case of isolated HIV infection, however, the
clinical manifestations and severity of the disease may vary, implying that the
time at which infection occurs (as early as 20 weeks gestation), the amount of
viral inoculum, and preexisting immunodeficiency are important variables.
Experimental evidence suggests that the monocyte/macmphage may be the initial
cell infected with HIV and may subsequently be a major source of continued virus
replication and infection. It is important to emphasize that certain organs have
significant numbers of monocytes and macrophages that are CD4 receptor-positive
(the CD4 receptor is required for HIV infection of cells). This may provide an
explanation for the occurrence of the isolated brain and lung involvement some-
times observed in infants with HIV infection. In vitro infection of monocytes with
HIV may result in giant cell formation, with a histologic appearance similar to
that of the giant cells found in tissue sections obtained from the lung and brain
of HIV-infected patients.
The interaction of HIV and other viruses may result in clinical features unique
to either adult AIDS or pediatric AIDS. For example, Kaposi's sarcoma- a
frequent malignancy in AIDS -has not been convincingly demonstrated in pedi-
atric AIDS. On the other hand, chronic parotid swelling and pulmonary lymphoid
interstitial pneumonitis (LIP) are frequently found in pediatric AIDS but rarely
observed in adult AIDS.
The pathogenesis of LIP was linked to infection with Epstein-Barr virus (EBV)
in several studies which used EBV DNA probes to detect the presence of virus
in lung tissue. The response to EBV infection in patients with AIDS is abnormal.
In EBV-infected infants with AIDS followed prospectively, virus was cultured
for several weeks prior to appearance of antibody to EBV antigen. There was
an absence of an IgM anti-VCA response and failure to develop antibody to
Epstein-Barr Nuclear Antigen (EBNA). IgG antibody to Anti-Viral Capsid Antigen
(VCA) and antibody to Early Antigen (EA) remained high in most patients,
suggesting persistent chronic EBV infection. This is in contrast to normal
individuals where infection results in an initial increase in antibody to VCA,
followed by a decline to low levels which persist for life.
Patients with pediatric AIDS and EBV infection also have prolonged
virocytemia, easily recoverable EBV, and increased numbers of EBV-infected
cells. It is possible that the existence of HIV infection in the lung, followed by
EBV infection, results in a lymphoid proliferative response manifested as LIP.
EBV-infected B cells are more susceptible to HIV infection than uninfected B
cells and may be stimulated by HIV antigens to excessive proliferation. A
suggested interaction between HIV and EBV was based on observations in EBV-
13

infected adults who subsequently became infected with HIV and developed addi-
tional immunologic abnormalities. The more common sequence of infection in
pediatric AIDS, HIV followed by EBV infection, may result in a lympho-
proliferative disorder. Adults have a reverse sequence more commonly, and they
rarely develop LIP.
The presence of LIP may modify the susceptibility of infants to opportunistic
infection. Two studies note that patients with LIP had fewer opportunistic
pulmonary infections and that patients with Pneumocystis carinii pneumonia (PCP)
do not have evidence of pulmonary hyperplasia.
HIV infection of immunocompetent cells may result in immunodeficiency by
several mechanisms. Following infection, syncytia formation and fusion of cells
occur with subsequent death in vitro. A similar mechanism in vivo could result
in T-cell depletion. Cytotoxic T-cells may also destroy infected cells in vivo
resulting in reduced numbers of T4 cells and the characteristic reversed T4/T8
ratios seen in most patients. However, early immunologic abnormalities occur
prior to depletion of immunocompetent cells, suggesting that HIV infection may
directly interfere with immune function. For example, HIV infection of T-cells
in vitro results in decreased IL-2 and CD4 receptor mRNA and IL-2 and CD4
receptor expression. It is also known that Peripheral Blood Mononuclear Cells
(PBMC) from patients with AIDS and preAIDS have decreased cytokine produc-
tion in vitro. Many of these cytokines are essential for immune interaction,
antiviral, and antitumor effects. Deficiencies of interferon-a (IFN-a), interferon-y
(IFN-y), tumor necrosis factor-a (TNF-a), tumor necrosis factor B (TNF-B),
interleukin-2 (IL-2), and interleukin-1 (IL-l) have been described. One or more
cytokine deficiencies may result in secondary defects, such as abnormal monocyte/
macrophage function, decreased natural killer-cell activity, decreased antibody
formation, and decreased T-cell immunity.
Abnormalities of macrophage function may play a more critical role in the patho-
genesis of HIV-induced immunodeficiency than previously appreciated. The
macrophage may act both as a reservoir of HIV infection and, as a result of its
central role in the T- and B-cell immunity, may play a primary role in early
immunodeficiency .
Immunodeficiency following HIV infection may also result from the
immunosuppressive effects of HIV envelope glycoprotein or other immuno-
suppressive regions of virus proteins. Following HIV infection, envelope
glycoproteins are secreted to the surface of cells. Several regions of the envelope
glycoprotein are capable of suppressing the immune response in vitro.
Glycoprotein 120 (gpl20) is capable of binding to the CD4a region of the CD4
receptor and interferes with immune function in vitro as measured by mitogenic
and antigenic stimulation.
Prospective studies of patients with AIDS suggest that B-cell abnormalities may
precede other laboratory features of immunodeficiency. Patients usually have
polyclonal hypergammaglobulinemia. This may result from chronic HIV antigen
stimulation or loss of suppressor T-cell regulation. In contrast, antibody levels
to HIV antigens are not markedly elevated as is usually observed in other chronic
viral infections. Further, specific IgM antibody to HIV is difficult to demonstrate
in either acute or chronic infection. As the syndrome progresses, patients lose
their ability to respond to other antigens following immunization.
14

               Table 1. B-Ceil Abnmnalitics in AIDS
* Polyclonal hypergammaglobulinemia
W Failure to produce antibody following immunization
w Increased spotttaneous IgG secretion, due to:
   1) antigenic stimulation by HIV
   2) increased numbers of EBV infected cells
   3) HIV-induced T-cell dependent B-cell activation
W Decreased B-cell response to antigens
* Decreased B-cell response to T-41 independent mitogens
T-cell abnormalities are numerous and profound. Early abnormalities consist
of inability of PBMC to respond to antigens in vitro and of cytotoxic T-cells to
kill target cells. In vivo, this correlates with absence of reaction to delayed hyper-
sensitivity skin tests. As the syndrome progresses, PBMC from patients lose their
ability to respond to mitogens and alloantigens and are unable to produce normal
amounts of essential cytokines (IFN-a, IFN-y, TNF-a, TNF-b, IL-l, IL-2). The
broad-based T-cell deficiencies are most likely a result of both intrinsic abnor-
malities and severe T-cell depletion.
Table 2. T-Cell Abnormalities in AlDS
Number
* Lymphopenia
* Decreased T helper cells (decreased H/S
ratio)
* Decreased T suppressor cells
m Increased Dr and OKTlO expression on
CD8 cells
Function
* Absent delayed hypersensitivity shin tests
* Diminished PBMC response to antigens
* Diminished PBMC response to mitigens
(PWM, Con A, PHA)
* Decreased cytokine production
   IL-I, IL-2
   IFN-a, IFN-y
   TNF-a, TNF-8
* Decreased Thymic hormones (thymulin)
A number of monocyte defects have been reported in AIDS. Monocytes fail
to mature at a normal rate, do not have normal chemotaxis and adherence, and,
as determined by use of certain in vitro assays, are unable to kill some micro-
organisms. An unanswered critical question is whether antigen processing or
antigen presentation of HIV-infected macrophages is abnormal.
The major abnormality of the complement pathway which has been described
in AIDS is that of increased immune complex formation. This is probably a result
of both non-specific polyclonal hypergammaglobulinemia and chronic antigenemia
as a consequence of chronic infection with a number of microbial agents. Some
of the severe consequences of chronic immune complex formation, such as renal
failure, are rarely observed in patients with AIDS. However thrombocytopenia,
which is more commonly found, may result from removal of immune complex
coated platelets from the circulation.
15

           Table 3. Complement Abnormalities in AIDS
* Increased circulating immune complexes
* Increased HIV specific immune complexes
m Immune complex deposition (renal disease, thrombocytopenia)
In order to establish a diagnosis of HIV infection, either antibody to HIV or
the presence of HIV must be demonstrated. A number of tests for antibody are
commercially available. Most of these are enzyme-linked immunosorbent assays
(ELISA) and utilize HIV antigens coated on to plastic surfaces to detect IgG anti-
body in the test serum. The assays are designed to be highly sensitive and there-
fore readily detect antibody positives, but as a consequence also have a high rate
of false positives.
Table 4. Enzyme Linked Immunosorbent Assay (ELlSA)
* ??????
1) Disrupted virus placed in plastic wells or on plastic beads
2) Incubated with test serum
3) Antibody to antigen detected by enzymatic reaction.
* ???????????????
1) Sensitive - best for screening
2) High number of false positives
(<50X are confirmed positive by Western blot)
3) A positive must be confvmed by Western blot
It is necessary to confirm each positive by first repeating the ELISA and then,
if again positive, confirming the presence of antibody to specific HIV antigens
by a Western blot. Other antibody assays include indirect immunofluorescence
and radioimmunoprecipitate assays and are primarily for investigational purposes.
A major difficulty in the diagnosis of HIV infection in newborns and infants
is the inability to differentiate between passively transferred maternal IgG anti-
body to HIV and actively produced antibody from the infant. Unfortunately IgM
antibody to HIV has been detected only inconsistently. There are several other
methods of establishing HIV infection in the infant. Serial antibody testing by
Western blot may demonstrate the emergence of new antibodies to HIV antigen.
Culture of PBMC for virus or the use of DNA probes may demonstrate presence
of HIV, but the methods are currently less sensitive than antibody assays. Newly
developed assays for the detection of HIV antigen in serum may provide an alter-
native means of testing.
A diagnosis in pediatric AIDS can be confkmed using a few well established
assays of immunologic function coupled with assays for virus infection or demon-
stration of viral antigen. The confirmation of HIV infection is essential to provide
appropriate care for infected infants and children.
16

TRANSMISSION OF HUMAN IMMUNODEFICIENCY VIRUS
INFECTION IN THE UNITED STATES
Martha F. Rogers, M.D.
The human immunodeficiency virus (HIV) is transmitted by three routes:
1) from mothers to infants during the perinatal period, 2) through parenteral
exposure to infected body fluids, primarily blood, and 3) through sexual contact.
Although other modes of transmission have been proposed, including transmis-
sion through casual contact, through insect bites, through exposure to contami-
nated needles used for tatooing, ear piercing, or acupuncture, and through receipt
of hepatitis-B vaccine or immune globulin, there is little or no evidence supporting
such occurrence.
Perinutal Transmission
Perinatal transmission accounts nationwide for about three-quarters of cases
of HIV infection in prepubertal children. The epidemiologic characteristics of
these children closely parallel those of heterosexual adults with AIDS, particu-
larly women. Over half (65%) of reported cases of AIDS in women, 69% of
heterosexual men with AIDS, and 73% of the perinatally acquired AIDS cases
in children were related to IV drug abuse or sexual contact with IV drug abusers.
The geographic areas most affected by heterosexual and perinatal transmission
have been the New York City metropolitan area, northern New Jersey, and
southern Florida. The majority of heterosexual men (74%), women (72%), and
children with perinatally acquired infection (88 W) have been black or Hispanic.
Most are inner-city dwellers of low socioeconomic status.
Evidence suggests that perinatal transmission can occur by three modes:
1) transplacental passage of the virus in utero, 2) exposure to infected maternal
blood and vaginal fluids during the labor and delivery of the infant, and 3) post
partum ingestion of breast miIk containing the virus. The proportion of perinatrdly
acquired cases attributable to each of these modes is unknown.
Preliminary data from prospective studies of infected women and their infants
indicate that the frequency of transmission from mothers to their infants may be
as high as 50%. Both symptomatic and asymptomatic women can transmit HIV
to their infants. The risk factors associated with transmission, however, have not
been defined. Mothers can transmit HIV in more than one pregnancy. Each
infected infant is at risk of developing AIDS.
  Table 1. Possible Risk Factors for Transmission of Hlvfiom Mothers to 7heir Infants
Viral factors-viremia, latent vs. active infection, X cells infected
Substance abuse or other environmental/behavioral factors
Other infections present
Level of immune suppression
Continued exposure to HIV
Host factors
17

These prospective studies also indicate that maternal HIV infection is probably
not associated with adverse prenatal or neonatal infant outcomes, nor with an
increase in obstetrical complications. Two studies have reported an increased
frequency of spontaneous abortions among seropositive women, but three other
studies have not observed this trend. To date none of the women in the CDC
Classification-3 or less developed AIDS during the pregnancy. In one study,
however, a trend towards an increased incidence of hospitalizations for infections
in seropositive versus seronegative pregnant women was observed. In addition,
a greater proportion of seropositive pregnant women developed complications
during an average of 6 months' follow-up postpartum, compared with seropositive
women who did not become pregnant and who were followed an average of
12 months.
Parenteral Transmission
Transmission through parenteral exposure to infective body fluids has occurred
primarily in 2 populations: 1) in persons sharing contaminated needles used to
inject illicit drugs, and 2) from donors to recipients of blood or blood products.
Transmission through accidental injuries with contaminated needles or other cutting
objects in the health care setting has been extremely rare, occurring in less than
1% of such injuries.
About one-fifth of reported AIDS cases are attributable to transmission through
use of contaminated needles for injecting illicit drugs. Seventy-four percent of
these patients come from New York and New Jersey. Seroprevalence studies of
IV drug abusers have shown infection rates of up to 70% in these areas, 42%
in Boston, 11% in Chicago, and 10% in San Francisco. Several studies have shown
that in IV drug abusers, seroprevalence is highest in those who are black or
Hispanic.
Transmission through receipt of infected blood or blood products accounts for
3 % of adult and 17 % of the pediatric AIDS patients nationwide. Cases are scattered
throughout the United States with California and New York having the greatest
number of cases. Most of the children with transfusion-acquired AIDS were trans-
fused in the neonatal period or had coagulation disorders.
No cases of transfusion-acquired AIDS have been reported in children trans-
fused after initiation of donor screening for HIV antibody in March-April 1985.
Although transmission through transfusion of seronegative blood can occur when
the donor is in the early stages of HIV infection and is viremic but not yet producing
antibody, this has been rare.
In one study of the recipients of blood collected prior to HIV screening from
donors who later developed AIDS, the risk of HIV infection following receipt
of blood from an infected donor approached 100%. In instances of split donations,
in which one recipient became infected, so did the other. Once a seropositive
donor transmitted the virus to a recipient, all subsequent recipients of blood from
that donor also became infected.
Although donor screening procedures and heat treatment of coagulation products
have markedly reduced the transmission of HIV through these routes, cases of
AIDS in persons who received these products before these interventions will
continue to occur. The incubation period for AIDS in adults with transfusion-
acquired infection averages 3 years and has been as long as 7 years. The incubation
is shorter for children, averaging 2 years and ranging up to 6 years.
18

Sexual Transmission
Sexual contact is the most common mode of HIV transmission in adults, and
accounts for over threequarters of reported cases. Sexual contact between
homosexual or bisexual men has accounted for 95% of sexually acquired HIV
infection, but heterosexual transmission is increasing, particularly in minority
populations. In contrast to gay male cases, about three-quarters of women with
AIDS and of heterosexual men with AIDS are black or Hispanic.
The frequency of transmission between heterosexual sex partners is around
lo%-15% in the partners of hemophiliac men and transfusion recipients, about
40% in the non-drug-abusing partners of IV drug abusers, and about 58 % in a
study of partners of primarily IV drug abusers and Haitian immigrants. Some
persons have acquired infection after only a few at-risk sexual encounters, while
others did not acquire infection despite repeated contact over several years.
Medical conditions (such as cervicitis or vaginitis), menstruation, and sexual prac-
tices (anal intercourse) that involve greater exposure to blood and friable tissues
increase the likelihood of transmission. Transmission has occurred, however, in
persons engaging in vaginal intercourse exclusively and without any of the above
conditions.
Casual Contact
Transmission through close but nonsexual contact (so called "casual") has been
extremely rare. Only three possible cases have been reported. Two of these cases
involved nursing care of bedridden patients associated with extensive and repeated
contact with blood and body fluids of the infected patient. The other case involved
apparent transmission between two siblings, but the nature of the contact was
not well characterized. Nine other independent studies of over 400 family members
of HIV-infected patients have not found evidence of household transmission. In
addition, none of the family members of the over 30,000 AIDS cases reported
to the Centers for Disease Control (CDC) has developed AIDS as a result of house-
hold contact.
Intervention methods designed to prevent further spread of HIV infection must
consider the epidemiology of the infection including the modes of transmission,
the characteristics of the currently affected populations, and the potential for spread
within these populations and to other groups.
19

APPROACHES TO PREVENTION OF HIV INFECTION
Walter R. Dowdle, Ph.D.
The five basic mechanisms for prevention of infectious diseases include
1) immunoprophylaxis (vaccine), 2) chemoprophylaxis/therapy (drugs),
3) sanitation (environment), 4) lifestyle modification (behavior), and 5) vector
control. Of these five mechanisms, the first four are applicable to prevention of
HIV infection. There is no evidence to suggest that the AIDS virus is transmitted
through insect or other vectors.
The first two of the four mechanisms, vaccines and prophylactic/therapeutic
drugs, are under development. Ideally, both will be incorporated into future strate-
gies. Much progress has been made toward understanding the basic properties
of potential retrovirus vaccines, but 5 to 10 years or more may be required before
a vaccine can be realistically considered as a public health tool. How a vaccine
will be utilized in prevention strategy will depend upon its availability, cost,
efficacy, and safety. Greater promise has been shown for antiviral drugs, partic-
ularly as we learn more about the pharmacology and clinical efficacy of certain
classes of drugs.
For the present, however, our strategy must rely on the two remaining
mechanisms, modifying the environment and modifying personal behavior.
Modifying the environment is of limited benefit, but some changes have already
been accomplished. Tests for screening the blood of donors for HIV antibody
have been used regularly for nearly two years. This screening has vastly reduced
the risk of transfusion-associated infections. Donor screening and treatment of
factor VIII has virtually eliminated the risk of AIDS for persons with hemophilia.
The environment does not pose a major risk for health care workers. Needlestick
injury would appear to be the greatest concern, but recommendations for caution
by health care workers have been widely disseminated. Our main task has been
to reassure the public that the general environment does not present a threat. The
virus is not transmitted through casual social contact or food and water.
The remaining and most important mechanism for prevention consists of
modifying behavior. This is a difficult and often controversial task that in the
past has not been considered effective for other sexually transmitted diseases
(STDs) . Nevertheless, we must make a concerted effort to develop effective educa-
tional programs regarding HIV infection. Specific mechanisms for modifying
behavior include modification of sexual practices of infected persons, routinely
offering testing and counseling to persons at high risk, treating IV drug abusers
to preclude transmission of the virus through the use of contaminated needles,
and information and education programs. There is considerable evidence that risk
reduction already has occurred in the gay community.
Effective information/education programs include a whole spectrum of activi-
ties, ranging from TV spots to individual counseling sessions. An effective
program requires multiple channels of information tailored to specific audiences
and delivered through the auspices of a wide range of private and public organi-
zations and institutions. The public Health Service Information/Education Program
is directed to the general public, to school- and college-aged young persons, to
other persons at increased risk, and to health workers. The program is budgeted
20

at over 79 million dollars, with 102 million proposed for next year. The general
public can be informed and educated through hotlines, coalitions, ad campaigns,
and clearinghouses. That, of course, forms the foundation and background on
which more specific programs aimed at high-risk groups can be developed. Each
of the nation's school systems will decide how best to implement education in
AIDS prevention at appropriate ages. There is less argument here than may appear
on the surface. Our interest is in assisting local school groups in developing their
own curricula. We are trying to facilitate that activity, but by no means is the
Federal government attempting to tell anyone what to teach. The individual school
boards will make their own decisions. We do feel that there is great demand and
eagerness in the schools to move on the education issue.
Efforts at educating health workers can be productive, because they are a major
channel of information to infected patients and in carrying preventive informa-
tion to others.
When we speak of educating those at increased risk for pediatric AIDS, the
preferable strategy is to prevent infection in women of child-bearing age. This
is a very difficult area. Those at increased risk are the female sex partners of
men at high risk, intravenous drug users, prostitutes and clients. These are diffi-
cult to reach. The second line of defense is to provide counseling to those already
infected to help them enter into a program of comprehensive health care and
follow-up, including avoidance of pregnancy. After that, our options grow less
and less clear.
In some geographic areas and for some populations, these information/educa-
tion activities are beginning. To ensure maximum effectiveness, these programs
must be constantly evaluated and modified if necessary. Increased knowledge and
general awareness of prevention information is important, but our ultimate criterion
of success must be a change in personal behavior that results in decreased trans-
mission of infection.
21

NATURAL HISTORY OF HIV INFECTION IN CHILDREN
Gwendolyn B. Scott, M.D.
One hundred thirty-four cases of perinatal Human Immunodeficiency Virus
(HIV) infection were identified in South Florida between January 1981 and
December 1986. Each year since 1981, we've seen an increasing number of cases.
In 1986 we identified one-third of our total case load, and so far in 1987 we are
seeing at least one new case per week. These infants were born to 109 infected
women. Drug abuse accounted for 22% of the disease in the mothers in compar-
ison to 60% reported nationally. Fifty-one of these children meet the CDC surveil-
lance criteria for AIDS; 81 others have clinical symptomatology and are diagnosed
as ARC. Two, who are now 7 years old, are asymptomatic.
Ninety-two percent of these children were black. The majority of children
presented with clinical disease in the first two years of life (74%). There are,
however, a number of children who present between the ages of 2 and 6 with
the first manifestations of disease. The overall mortality in these children is 35 % ,
but among those who meet the criteria for AIDS, the mortality is 73.5 % .
Pneumocystis carinii pneumonitis (PCP) and Candida esophagitis are the most
common opportunistic infections. Failure to thrive is the presenting complaint.
Lymphadenopathy , hepatosplenomegaly , and persistent oral thrush are some of
the more common findings. We have seen disseminated cytomegalic virus infec-
tion frequently, five cases of cryptosporidiosis, and one case of Mycobacterium
avium-intracellulare. Tumors occur, but are rare in children. We have a few cases
of Kaposi's sarcoma, one of lymphoma of the liver, and one of Burkitt's lymphoma
of the lung. Opportunistic infections presenting in the first year of life are
associated with a higher mortality.
In an effort to better describe the clinical outcome of infection in pediatric cases,
a syndrome approach has been applied.
Table 1. Syndromes Associated with Pediarn'c HIV fnfecrion
Wasting Syndrome
Lymphoid Interstitial Pneumonitis
Recurrent Bacterial Infection
Encephalopathy
Lymphadenopathy Syndrome
Cardiomyopathy
Hepatitis
Renal Disease
More than one of these syndromes may occur in the same patient separately or
simultaneously. There appears to be a relationship between the immune response
and the development of these syndromes. For example, patients with early onset
pneumocystis pneumonitis or encephalopathy tend to have decreased evidence
of immune response and have a higher mortality. In comparison, patients with
LIP, lymphadenopathy syndrome, cardiomyopathy, recurrent bacterial infections,
or renal disease generally have a lymphoproliferative response with hyper-
22

gammaglobuhnemia, lymphadenopathy, and hepatosplenomegaly. Children with
PCP have an earlier age of onset and a higher mortality rate than those with LIP.
     Table 2. LIP and Early Onser PCP
                LIP          PCP
Mean Age of Onset      15.8 mos.       6.2 mos.
Median Age of Onset     13.5 mos.       5 mos.
Overall Mortality       25.7%         85.7%
The overall mortality for PCP is 85.7 % as compared to 25.7 % in the LIP group.
The immune response in these groups differs. PCP is associated with a lympho-
ablative response, while LIP is associated with a lymphoproliferative response.
A greater understanding of the spectrum of disease and knowledge of the natural
history of the various syndromes wiIl allow better predictions of prognosis.
Although not all HIV infected children die early in life, this is an illness that
is unpredictable and is associated with a high rate of morbidity and mortality.
The child is usually the first member of the family that is identified as being
infected. In this situation, screening of the parents and siblings is indicated. In
the majority of cases, the mother is asymptomatic at the time of diagnosis of HIV
infection in her infant. Of the 109 mothers in our patient population, 30% have
subsequently developed AIDS or ARC. Seventeen mothers have died.
This series of patients has offered us the opportunity to evaluate the risk of
an HIV infected pregnant woman delivering an infected infant. Twenty-three HIV
infected women have had 40 subsequent infants after the birth of the index case.
Not every subsequent infant will be infected. We have followed one woman who
has delivered four infected infants, but another mother had an infected infant and
subsequently delivered three uninfected children. Still another had an infected
infant, an uninfected one, and then another infected one. We obviously do not
know what factors cause a mother to pass the infection on to her infant. Of all
the subsequent infants, 52% are infected. This represents a substantial risk for
these women and emphasizes the importance of identifying them so they can
receive appropriate counselling regarding pregnancy. This population may repre-
sent a special population of women, and further studies are underway to deter-
mine the risk of having an infected child in an HIV-positive woman who has not
had previously infected infants.
In conclusion, pediatric HIV infection presents with a broad spectrum of disease
and is associated with a high mortality rate. The majority of children with this
disease are black or Hispanic and reside in the lower socioeconomic areas of the
inner city. It is important to recognize infected children early so that appropriate
instructions for care can be given to the parent and regular medical followup can
be instituted. In addition, with the development of anti-viral drugs, early diag-
nosis and recognition will be imperative, so that early treatment can be given.
Screening of the family is important to identify infected family members and to
give appropriate counselling and education. The HIV-positive woman is at risk
for giving birth to an infected infant. Prevention of perinatal infection will only
be accomplished by prevention of disease in women or by other interventions,
such as drug therapy. Identification of HIV-positive women is important so that
appropriate education and counselling can be provided.
23

NATURAL HISTORY OF HIV INFECTION II
James Oleske, M.D
Estimates from the CDC suggest that by 1991 there will be 12.5 million
Americans infected with the AIDS virus (Human Immunodeficiency Virus-HIV)
and 250,000 of these will be symptomatic AIDS cases. Based on our experience
and those of others caring for pediatric AIDS cases, by 1991 there may be 10,000
to 20,000 symptomatic HIV infected infants and children in the USA.
Our difficulties in providing care to over 60 active pediatric AIDS cases at
Children's Hospital of New Jersey in Newark indicate major problems in the near
future. The health care requirements of infants and children infected with HIV
are extensive and include the complex tertiary medical capabilities of a pediatric
hospital and intense psychological services. The care we provide to these chtidren
includes vigorous nutritional support, including placement when necessary of
intravenous catheters, early hospitalization for treatment of possible infection
episodes, and monthly replacement therapy with intravenous gamma globulin.
Tissue biopsy of lung, lymph nodes, thymus and bone marrow, as well as CAT
scan, gallium scan and esophagoscopy are frequent requirements in the clinical
evaluation of these children. Research and time consuming investigational drug
studies are now being undertaken on our patients. All of these activities -diagnosis,
clinical care, and necessary research- have placed an enormous burden on the
available resources at our children's hospital. Besides the medical dilemma posed
by AIDS, there is the significant public misunderstanding of this disease with
ongoing stigmatization of patients and their families.
The development of antibody screening tests has substantially reduced (although
not eliminated) the risk of blood transfusion acquired AIDS. It is true that the
majority of cases of AIDS in children is due to perinatal exposure from an infected
mother, but for the next five to six years we must follow a cohort of newborns
who received small blood transfusions in the nursery between 1980 and 1985,
and who are at risk of developing this disease. As pediatricians we must insist
that we have safe blood products for use in children and that we use blood products
appropriately.
It doesn't take a sophisticated laboratory to make a diagnosis of AIDS. If the
epidemiology and the clinical historic patterns are present, we are comfortable
in Newark making the diagnosis after simple laboratory studies including:
Complete Blood Count (CBC), quantitative immunoglobulin assays, liver func-
tion testing, chest X-rays, and HIV antibody testing. Anemia leads the list of
abnormalities. These children are almost all anemic and most have elevated liver
enzymes.
        Table 1. Laboratory Findings in Infants and Children
Hypergammaglobulinemiia/Hypogammaglobulinemia      Anemia
Depresssed T-helper cells              Lzukopenia
Reversed lymphocyte subset ratio           Thrombocytopenia
Depressed lymphocyte responses to mitogens       Elevated level of circulating immune complexes
Decreased specific antibody responses            Elevated serum transaminase levels
The clinical spectrum of illness in children with HIV infection is expanding
as our experience with this disease increases. When we looked carefully at our
24

AIDS and ARC children with failure to thrive, we realized that many of these
infants had problems with the central nervous system. Many had a chronic
encephalopathy. Others had primary HIV infections of the CNS, with failure to
thrive and loss of developmental milestones, the equivalent of the dementia seen
in adults. A child who is otherwise well can present with p&nary CNS infection
without any other manifestation of AIDS, and even an essentially normal immune
system.
        Table 2. Neurologic Findings in Children with HIV Infection
Developmental Delay/Loss of Developmental     Motor Dysfunction
Milestones                   Microcephaly
Chronic Encephalopathy              Abnormal CT Scan Findings-Cortical
Seizure Disorders                  Atrophy, Calcifications
One of the clinical problems we have had is dealing with the gastrointestinal
manifestations. These children have a variety of GI problems including disten-
sion, diarrhea, inability to eat, and tremendous discomfort. The resultant effect
is marked malnutrition. In seven of fifteen autopsies, we saw cardiovascular abnor-
malities. Three were congestive cardiomyopathies and four arteriopathies. One
case resulted in a fatal coronary artery aneurysm.
Unlike adults, infants with HIV infection will most likely be symptomatic over
the course of their illness. There are some differences between pediatric and adult
AIDS, and these are outlined in the following table.
        Table 3. Differences between Pediatric and Adult AIDS
1. Kaposi's sarcoma and B cell lymphoma are rare in children
2. Hepatitis B infection is less frequent than in adults
3. Hypergammaglobulinemia is more pronounced in children
4. Peripheral lymphopenia is uncommon in children
5. Lymphoid interstitial pneumonitis (LIP) is much more common in children
6. Some children will have normal ratio of helper to suppressor T cells (although quantita-
tively T helper cells are diminished)
7. Serious bacterial sepsis is a major problem in children
8. Dysmorphic features may be found in some children
9. Acute mononucleosis-like presentation is rare in children
10. Progressive neurologic disease secondary to primary HIV CNS infection is more
pronounced in children
The final mortality rate is unknown, but with our present program at Children's
Hospital, we have seen the mortality rate decrease to 35%. With the use of
intravenous gamma globulin therapy, the quality of life for our patients has
improved, with recurrent septic episodes decreasing from 45% in 1983 to 5%
in 1986. We try to provide optimum care to each child, comprehensive rehabili-
tation services, early intervention programs, and psychological support for the
families of our patients. We have learned that HIV probably causes primary infec-
tions not only of the immune system, but also of the CNS, heart, kidneys, and
liver. This primary multisystem/organ infection with the HIV virus as well as
its known secondary opportunistic infections and malignancies present a major
problem in devising therapeutic programs. Educational programs regarding the
real risk of transmission, i.e., blood contaminated needles used in drug addic-
tion, and sexual contact, need to be extended to school age children and hard-to-
reach risk populations. If child-bearing age women at high risk for HIV infection
would avoid pregnancy, we eventually would see no new cases of pediatric AIDS.
25

HIV TRANSMITTED BY BLOOD PRODUCTS
Margaret W. Hilganner, M.D
The extent to which the national blood supply has been contaminated by the
Human Immunodeficiency Virus is unknown. With a basis of epidemiologic data,
however, one can say that the virus probably came into the blood supply in 1977.
Retrospective study of stored samples of hemophiliac plasma showed the appear-
ance of anti-HIV antibodies in 1979 in a few patients (i.e., became seropositive)
and in the majority of hemophiliacs during the years 1980-1983. The first
hemophiliac was reported with the disease in 1981. When widespread testing of
the donor population became available in March 1985, 0.4%-0.9% of donors
were found seropositive nationwide, with the highest figures in those cities (New
York, Miami, Los Angeles, and San Francisco) with the greatest reported number
of AIDS patients.
Incidence
The CDC has recorded a total of 939 cases of AIDS related to transfusions
of HIV-contaminated blood products as of 2 March 1987. This figure is 2.9%
of the total persons reported with AIDS and includes all adults, adolescents, and
children. Of this total, 287 individuals have had hemophilia or other coagulation
disorders and have been transfused with fresh frozen plasma, cryoprecipitates
for factor concentrate, while 652 individuals have been transfused with red blood
cells or components of blood.
When the figures for the children are separated from the total, we find that
78 children or 18% of the total 453 children reported with AIDS have had the
virus transmitted via blood and blood products. Of those, 24 (5%) have had
hemophilia and 54 (or 12 W) have been transfused for other reasons. Although
these numbers are increasing with time, the percentages of the total have remained
stable. The higher percentage in babies transfused with blood or components is
probably related to the shorter incubation period seen in infants, while the
percentage in young hemophiliacs is only slightly higher than the figures seen
in the adult hemophiliac.
Natural History
Information about the natural history of the disease in the transfused patient
is evolving slowly, but with some accuracy, because the date of transmission of
the infected blood can be ascertained in many cases. A wide spectrum of disease
seems to exist, with variables related to age, underlying diseases for which the
transfusion was given, and the product used for transfusion. The Red Cross "Look
Back" study currently going on in all Blood Banks is tracing recipients of blood
from donors known to have been HIV-negative on subsequent testing. The
Transfusion Safety Study (TSS) is enrolling all donors and recipients of
HIV-positive blood donated in the six months prior to universal screening of all
donors for seropositivity in four high risk cities in the United States. With these
two studies, one hopes that complete epidemiological information will be obtained
concerning the natural history of AIDS as transmitted through blood products.
At present, data from the TSS show that 90% of those patients who received a
26

unit of blood found retrospectively to be HIV seropositive have themselves become
seropositive. Although 75% of recipients died within one year after the trans-
fusion of causes not related to AIDS, there is a potential reservoir of unsuspecting
anti-HIV positive individuals deserving close follow-up and counseling.
Children tranfused in the newborn period who subsequently developed AIDS
were first reported in 1983 by Ammann et al., who found that symptoms appeared
six months to three years post transfusion. Others have shown that the incubation
period from transfusion to the appearance of symptoms seems shorter in those
children who were transfused as very small premature babies, when compared
to the older child where the incubation period may be the same as in the trans-
fused adult. In the adult, Cm-ran has shown that the incubation period may be
15 months to 57 months (mean 27 months), and current CDC data suggest a span
of seven years. In addition, Cm-ran showed that blood components other than
those used by hemophiliacs could transmit AIDS.
The product used for transfusion has marked influence on the transmission of
disease. Those products containing white cells appear to have transmitted disease
more readily than red cell products. For example a set of twins seen at The New
York Hospital were transfused with components from the same donor. The twin
receiving the red cells did not become HIV positive, while the twin receiving
the platelets developed signs and symptoms of AIDS within 16 months.
Those who received a greater number of transfusions in the period 1980-1985
are more likely to be seropositive than those receiving a smaller number of trans-
fusions or single donor units. For example: only 12% of the 84 transfusion-
dependent thalassemia patients at The New York Hospital-Cornell Medical Center
in New York City are seropositive. The figures for hemophiliacs, however, are
as follows:
    Table 1. HIV Starus of Hemophiliacs-NYHXUMC
Total Anti-HIV Positive                119/163
Adults       2 18 years            83194
Children      < 13 years            19143
         < 18 years            36169
73%
88%
44%
52%
The thalassemia patients have a donor exposure of 12-24 per year, while the
hemophiliac may have a donor exposure of 800,000 to 1 million per year. The
single donor unit is less likely to be contaminated than the pooled donor product
from which the factor concentrates for the hemophiliac are manufactured.
The hemophilia patient population, however, appears to be different from the
homosexual or IV-drug-using population in relation to progression of HIV disease
and infectivity of sexual partners. For example: only 20%-30% of the seropositive
hemophiliacs have the syndrome of AIDS related complex (ARC), and only 2%
have developed symptoms of AIDS. This figure appears substantially lower than
for the homosexual population, where 30%-35% of those followed longitudi-
nally have developed AIDS.
Measures Taken to Prevent Transmission of HIV in Blood Products:
Although HIV transmission via blood transfusions was recognized before a test
was available to define the HIV antibody status, decisive measures could not be
designed to insure the purity of the national blood supply. In the spring of 1984,
the New York Blood Center developed a confidential intake questionnaire allowing
27

the center to determine whether the donor was at risk and thereby to designate
whether the blood donation should be used for transfusion or discarded. This
process of self-exclusion allowed the donor to preserve his confidentiality and
contribute to improving the quality of the blood supply. Self-exclusion has now
been adopted by all other blood collection agencies.
Table 2. Measures Taken to Prevent Transmission of HIV in Blood and Blood Producrs
             1. Self-elimination of at risk donors
          2. Screening of Donor-March 1985
             HIV antibody testing (ELISA)
          3. Treatment of pooled products:
             Heat-wet or dry state
             Solvent/Detergent
            B-Propriolactone, U-V Light
             Monoclonal antibody derived
                Recombinant DNA derived
           4. HIV-Antigen tests
Treatment of the pooled plasma concentrates of clotting factors was begun in
1984 to decrease the amount of hepatitis virus contamination. Subsequently all
of the methods used were found effective in the elimination of HIV: Beta
propriolactone , ultra-violet light, solvent-detergent treatment, and heat have been
used to treat the concentrates in the wet or dried state. The Dry Heat method
is the current choice. Monoclonal antibody separation and recombinant manufac-
ture of factors are being tested and appear promising.
In 1985 the ELISA screening tests were introduced to identify blood or
plasmaphoresis products containing HIV-positive antibodies. These tests are 99.2%
specific for antibody and 93.4 %-99.6 % sensitive. The Western blot test performed
on all positive donations is 75 % sensitive for HIV antibodies. Newer ELISA tests
currently being tested are even more specific than those in use. With all of these
tests, the blood supply has been rendered virtually free of donations contami-
nated with HIV.'
The problem remains for the donation given in that period between infection
and development of antibody. A few recipients of red blood cells from units which
tested seronegative at time of donation have become antibody positive: the blood
donor has also subsequently become antibody positive. Many more are being iden-
tified with the "Look Back" program. We look forward therefore to the licensure
and marketing of a test for HIV antigen which will close the time span between
infection and antibody development, so that we may have a national blood supply
completely free of HIV.
28

SUPPORTIVE CARE AND TREATMENT OF PEDIATRIC AIDS
Arye Rubinstein, M.D.
This summary addresses some specific issues which may alter the course of
the disease.
Supportive Care
Failure to thrive due to a variety of etiologies is one of the major features of
pediatric AIDS. In some cases, malabsorption and protein-losing enteropathy are
identified. In others, it may be related to factors such as chronic infection. Proper
nutritional support (adequate caloric and protein intake) in many instances may
be crucial for the care of the child with AIDS. Where this goal cannot be achieved
by oral feedings, one has to consider nasogastric feeding or intravenous hyper-
alimentation. In our experience nasogastric feeding is of limited value. Gener-
ally, weight gain could be achieved through intravenous hyperalimentation using
venous (broviac) access, but this may be compromised by the development of
infections in the access lines.
Infection Control and Prophylaxis
Probably the most frequent problems in children with HIV infection, especially
under the age of 2 years, are recurrent bacterial infections which may progress
to sepsis and meningitis. The optimal strategies to prevent these infections have
not yet been established: I) Antibiotics (trimethoprim-sulfa, ampicillin). Several
groups have suggested that the use of prophylactic antibiotics may avert the cata-
strophic outcome of acute infections, especially in those patients who have a severe
underlying B cell deficiency. The drawbacks for the use of prophylactic antibiotics
are the development of side effects, resistant bacterial strains, and poor compli-
ance. II) Intravenous gamma globulin. Intravenous gamma globulin has been
applied in pediatric AIDS since 198 1. The rationale for the use of this therapy
was the documentation of an underlying B cell defect. In our experience this
approach has significantly reduced bacterial infections, especially in the younger
age group. Many unresolved issues exist with regard to this treatment: 1) what
dose is to be used; 2) is the higher dose currently used by us (300mg/kg) advanta-
geous over the low dose used in some agammaglobulinemic patients
(lOO-2tig/kg) with regard to a) the delay of immunological attrition, b) preven-
tion of infections, and c) removal of circulating immune complexes; 3) although
no risks have been involved with intravenous gamma globulin, it is a costly treat-
ment and requires a twice monthly 2-3 hour hospital short-stay admission;
4) should the European double-blind control study on IV gamma globulin be dupli-
cated in the U.S. ; and 5) should gamma globulin be used in any HIV infected
child who has a B-cell defect or should it be restricted to those who present clini-
cally with infections.
Treatment of Specific Infections
Certain infections in AIDS are extremely difficult to manage.
Our experience demonstrates that salmonellosis is extremely hard to eradicate.
Trimethoprim-sulfa, ampicillin, or ceftriaxone have failed in many cases to elim-
29

inate the carrier state. While in imrnunocompetent hosts the carrier state is of
no risk, children with AIDS who are carriers of salmonella often suffer recurrent
septic episodes. New strategies should be designed, therefore, to treat this condi-
tion. One of the promising medications is Fluroquinolone used at 4OOmg twice
a day.
Pneumoqstis cariniipneumonia (PCP). The most frequently utilized treatment
includes trimethoprim-sulfamethoxazol. In cases of failure, pentamidine is
introduced. Other medications such as dapsone in combination with other treat-
ments or as an alternate treatment have not shown great promise.
Disseminated cytomegalovirus (CMV} infection with/without retinitis. No treat-
ment has achieved permanent improvement. Trisodium phosphonoformate
(Foscarnet) may have a role.
Variceffa. A benign disease in immunocompetent children, varicella may be
life-threatening for immunocompromised patients. Children with apparently
normal in vitro lymphocyte mitogenic responses to specific and non-specific
mitogens and with normal T4 cell numbers and percentages have developed fatal
varicella. We, therefore, have adopted the policy of administering acyclovir in
any case where an extensive vesiculation occurs or where new vesicles develop
after the fourth day of the disease.
Treatment Modalities for the Direct or Indirect Control of HIV Infection
1) Immuno-reconstitution or immuno-potentiation. A whole host of such modal-
ities has been attempted in adults, including: bone-marrow transplantation, thymic
transplantation, thymic hormones, alpha and beta interferon, interleukin-2,
intravenous gamma globulin, isoprinosine, imuthiol, and enkephalins. The results
have been disappointing. They do not appear to control the virus, and some of
these immunopotentiating agents may activate virus replication. Experience with
these agents in children is limited. Several thymic transplants have been performed
but did not result in permanent objective benefit. The use of thymic transplants
and thymic hormones in children is of special interest, since children with HIV
infection demonstrate early in the disease course low levels of thymulin (FTS).
Our trials with thymic hormone- fraction V-have not yielded encouraging results.
Thymic hormones seem to temporarily improve T cell functions, but subsequently
a phase of rapid immunological attrition and disappearance of T4 cells was
detected.
2) Antiviral agents. A number of antiviral agents have been used in adults.
These include reverse transcriptase inhibitors such as ansamycin, suramin,
Foscamet, AZT, dCT, AL-721, a lipid component that promotes the extraction
of cholesterol from the viral membrane, and ribavirin (Virazole) which inhibits
guanyl transferase in the capping of the 5' end of HIV mRNA. Currently the two
most promising drugs are AZT and dCT. Phase I trials with AZT in children
with AIDS are in progress. In adults it has major side effects. dCT seems to have
less side effects in adults, but has the disadvantage of limited penetration of the
blood-brain barrier. The frequent and devastating CNS disease in children with
HIV infection has to be taken into consideration when an antiviral agent is selected.
Infection of fetal brain could be documented in the first trimester of pregnancy.
Brain atrophy can also be documented in neonates by CT scans. Consequently,
early treatment of CNS disease is imperative. Any antiviral drug that does not
penetrate the blood-brain barrier, therefore, may be of little benefit for the treat-
ment of HIV infection in the pediatric age group.
30

3) Hyperimmune Serum. We have used hyperimmune serum intravenously
since May 1984. Its benefit for the control of HIV infection has not yet been
established. Hyperimmune serum, however, may have a major role in the preven-
tion of infection. It should be considered for use in HIV-infected women during
early pregnancy to prevent fetal infection.
4) Combination treatments. Two forms of combination treatments are to be
considered: a) the combination of various antiviral agents. Some in vitro studies
suggest, however, that the combination of two or more antiviral agents may result
in antagonism. For example, in vitro AZT and ribavirin seem to antagonize each
other's effect on the AIDS virus; and b) the combination of antiviral agents and
immunopotentiation. Antiviral agents may avert the activation of HIV by
immunopotentiating agents.
31

INTRAVENOUS DRUG ABUSE AND
WOMEN'S MEDICAL ISSUES
Constance B. Wofsy, M.D.
Epidemiology
Women constitute 7% of all reported AIDS cases in the United States, in striking
contrast to the ratios elsewhere. Of women with AIDS, 28% are white, 51% are
black, 20% are HispanicLatino.
                  Table 1. Women with AIDS
               Percent of Total AIDS Cases
                       International
                Central Africa        40%-50X
                Haiti              20X-25%
             Canada, France           12%
                u.s.*                 1%
*If male homosexuals/bisexuals and hemophiliacs are excluded. women make up 30%
Fifty-two percent of women with AIDS are intravenous drug users (TVDUs), but
27 % are non-IVDUs who were infected by a male sexual partner, usually an IVDU
male. Of importance, 78% of women with AIDS are between the ages of 13 and
39, the peak childbearing ages. In pediatric AIDS, 45% of white and 88% of non-
white children acquired the disease from an IVDU parent.
It is estimated that there are more than a half million regular or casual IVDU
women in the United States. As many as 75,000 women IVDUs and 20,000 non-
IVDU female partners of male IVDUs may already be infected with the virus. With
an estimated l-2 million Americans infected, there may be 200,000 women who
carry the virus. Many haven't a clue that they are infected. The most highly
represented populations of infected women, IVDUs and nonwhites, ate already highly
stigmatized, but we must not let fear of stigma immobilize educational efforts.
Tmnsmission
HIV has been isolated from blood, semen, and cervical secretions. Transmission
can occur by vaginal intercourse from man to woman and from woman to man.
Iong-term sexual partners having unprotected sex with an infected person for several
years have a 15 % -45 % chance of becoming infected. An interesting study done
in Miami examined the percent of seroconversion in 32 couples after they learned
that one was seropositive. Eight chose abstinence and none seroconverted. Ten chose
to use condoms and only one seroconverted. Fourteen did nothing in the way of
protection and 12 became seropositive.
      `able 2. Reintionship Betwen Condom Use and Seroconwrsion
                    N             SEROCONV
                    -
Abstinence               8                  0
Condom                lo                   I
No Condom             14                 I2
FischL et al. JAMA 1981; 257640.
%
-
0
10
86
Sexual partners who also share needles are at even greater risk.
32

Women Who Use IV Drugs
IVDUs are hard to reach. Only an estimated 15% are in treatment programs.
To reach others, we must rely on community networks, health clinics, jails,
schools, churches, and the media. For those with little education and short atten-
tion span, the message must be simple and direct, and the language culturally
specific. Many who use drugs do not perceive of themselves as users. Those who
do not understand the health risks and the need to clean needles may continue
to share because they erroneously consider their partner to be nonrisk. Sharing
is socially expected; the urgency of the fix exceeds the risk; carrying drug
paraphernalia like a clean needle or bleach bottle may make one subject to arrest.
The sexual and needle risks for the woman often come from a man who is also
a user, and even more recalcitrant in acknowledging his own risk and in taking
responsibility for his female partner.
Our research group in San Francisco studied 289 sexually active women, none
of them prostitutes, and found that 5% were seropositive. These were self-referred,
so they do not represent a cross-section of the city. All of the seropositives have
a personal history of intravenous drug use or have a sustained relationship with
a specific high-risk partner. For over a year and a half, we followed 200 women
with no such personal history and found only one seroconversion in a city rampant
with HIV.
Women IVDUs have few resources. They often have responsibility for children,
multiple health problems, lack of family support, lack of money, depression, and
low self-esteem. Prostitution may be a means of support for the drug habit and
family.
HIV infection und Pregnancy
IV drug use does not inhibit fertility; some of these women have several children
arid may desire more. Birth control is often limited because of perceived lack
of risk of pregnancy, irregular periods, decreased sexual frequency as a result
of drug use, and lack of power to control the sexual expectations and preferences
of male partners.
Few programs are targeted at pregnant addicts. Existing programs may be costly
and too understaffed to deal with family patterns of abusive treatment, implemen-
tation of childbearing skills, and birth control education.
An infected woman has a 20%-60% chance of passing infection to her child.
An infected child is very likely to die, or be severely ill by two years of age.
Pregnancy may accelerate HIV expression in the woman and thus should be
avoided for the sake of mother and child. In one study, however, it was found
that 25% of infected babies were born to mothers who hadn't a clue they were
infected or that their partners were in a risk group. The infected infant estab-
lished the mother's diagnosis.
Many women who have had an infected child nevertheless have proceeded to
have additional children despite intensive culturally specific counseling. Child-
birth may provide self-esteem or be culturally expected.
Chnical Expression of HIV Infection in Women
The spectrum of HIV-related infections and malignancies is similar in men and
women, except that women rarely get Kaposi's sarcoma. Gynecologic problems
do not seem to be significantly increased.
Symptoms of HIV infection in women may be overlooked by physicians for
33

many reasons. Non-IVDU women are perceived to be a low risk group and HIV
symptoms are nonspecific. IV drug users have medical problems whose symptoms
mimic HIV related disorders (e.g., bacterial endocarditis, cotton lung, skin infec-
tions). Physicians may feel inadequate to the task of AIDS care, may wrongly
assume that all infected women are IV drug users or prostitutes, or may not have
overcome their own fears. It is known that strong stigma and profound repercus-
sions may result from the identification of an infected individual. Availability
for HIV testing or adequacy of the medical staff and community to deal with the
consequences are lacking. Thus, strong clues to infection may be overlooked and
women may proceed under the illusion that there are no risks.
Societal Issues for Women Infected with HIV
HIV infected women come from all walks of life. Forty-eight percent don't
use IV drugs. Many issues cross all class, race, and cultural boundaries-for
example: 1) extreme isolation-infection is often kept rigorously secret. depriving
women of the desperately needed support of family, friends, community, and
particularly other infected women; 2) profound grief for the loss of health, body
image, sexuality, and childbearing potential; 3) unavailability of medical care,
counseling, child care, housing, and related services; 4) lack of informed primary
care, OB/GYN, sex counselors, and abortion counselors; 5) the burden of making
decisions about initiation, continuation, and termination of pregnancy: 6) the lack
of natural "community," such as shared by gay men; 7) the abruptness of the diag-
nosis, which may be disclosed at the birth of an infected baby or death of a spouse;
8) loss of self-esteem-feeling dirty, useless, unwanted, and unlovable; 9) the
feeling of responsibility from watching a child die; 10) the stigma that "women
with AIDS are prostitutes who infect their children"; and 11) lack of male respon-
sibility, and the societal assumption that women have the responsibility for control
of sex and conception.
Importance of all Women to the AIDS Epidemic
Women still constitute the large bulk of the country's educators and caregivers
through roles of teachers, nurses, social workers, counselors, girlfriends, wives,
and mothers. All persons in these positions shoulder a great responsibility. They
are expected to overcome their own fears, become comfortable with sexual, drug,
and lifestyle issues, acquire wisdom, nurture and teach the young, comfort the
fearful, and care for the sick. It's a tall order.
34

EDUCATION TO PREVENT HIV INFECTION
Karolynn Siegel, Ph.D.
Education regarding modes of transmission of HIV infection remains the most
important public health strategy for controlling the spread of AIDS. Education
must mean more than just imparting information about practices that place one
at risk of becoming infected or of infecting others. It must also aim: to motivate
or persuade people to adopt certain behaviors and relinquish others, to eliminate
irrational fears about transmission through casual contact, to debunk myths and
stereotypes about the "kind of people" who get sexually transmitted diseases, to
dispute notions of culpability or blame for the epidemic, to instruct all levels of
society in safe sexual practices, and to insure cooperation in anti-drug programs.
While there is widespread agreement on the central role that education must
play in stemming the epidemic, there is somewhat less agreement on who should
be educated and at what ages, what messages should be communicated, and who
should assume responsibility for this education. These issues are currently the
focus of much public discussion and debate.
I want to emphasize the need to create a collective sense of national purpose
in combatting this disease. AIDS is still viewed by the majority of people as the
problem of a few select and socially isolated groups. We must strive to over-
come a "we/they" mentality. We must promote a feeling that as a society we all
have a shared interest in controlling this epidemic, which must take precedence
over more narrow self or special group interests. Everyone needs to feel a personal
investment in bringing about a solution to the problems the epidemic has posed.
The establishment of a national office of AIDS education, or a national director
of AIDS education, as recommended in the Institute of Medicine report, would
constitute a very important first step. The public must receive a clear and
unequivocal message that this problem merits a national plan of action and concerns
all Americans.
In England, Prime Minister Thatcher recently distributed a flyer under her name
to every household in the country, informing people of the seriousness of the
AIDS problem and telling them what they could do to protect themselves. This
action sends a clear and powerful message to the populace. It says that this matter
has the attention of the highest leaders of the country; every citizen should be
informed about it and concerned with helping control it.
I would like to move on to the question of "who should be educated?" Clearly,
we must continue to focus heavily on the established risk groups-gay and bisexual
men and intravenous drug users and their partners.
We must target extensive educational activities to blacks and Hispanics, groups
greatly over-represented among those with AIDS. We must enlist ongoing cooper-
ation of support groups, community leaders and community-based organizations
and must always consider cultural norms. We must find a way to tie the hoped-
for behavior change into their own value and belief system. The importance of
bearing a healthy child may be used to help perspade women to use condoms
as protection against AIDS and other sexually transmitted diseases (STDs).
35

We know that adolescence is a time of experimentation that often involves drug
use and sexual experimentation. The AIDS epidemic has increased the urgency
to reach a goal of having "every junior and senior high school student receive
timely STD education."
A principal concern is how we should communicate. Here, we can draw some
lessons from our efforts over the past few years to educate risk groups members -
especially gay men. Our own research indicates that some of the messages
contained in risk-reduction guidelines, which have been used as a principal educa-
tional tool among gay men, have sometimes had unintended negative conse-
quences. Recommendations like `know your partner" and "reduce your number
of partners" have often created a false sense of security. One can rarely take the
kind of exhaustive sexual history from a prospective partner that would be neces-
sary even to begin to evaluate the degree of risk inherent in sexual encounter.
We have found that men who continue to engage in risky sex, but with fewer
partners or nonanonymous partners, believe that they have adequately reduced
their risk of infection because they are in compliance with safe-sexual-practices
guidelines. Similar messages are being used now in educational materials directed
to the heterosexual public.
While multiple messages about different prophylactic behaviors may not seem
to be competing with each other, they are. The message we communicate should
be unambiguous, confrontational, and consistent. There are only two acceptable
adaptations to the threat of the infection-abstinence, or using a condom in every
sexual encounter where a risk of transmission may exist. If you offer people several
alternative ways to adapt, they wilI usually choose the course of action that involves
least personal change. There would be no problem if the alternatives were all
equally efficacious, but they rarely are.
Who should do the educating? The source of any message is an important deter-
minant of the attention it will receive. Therefore, I would recommend that we
make greater use of opinion leaders in trying to alter the public's attitudes toward
the epidemic and modify sexual norms among sexually active individuals. Opinion
leaders are widely esteemed public figures who have the confidence and trust
of much of the public. Because they are respected and trusted, their positions
on matters are sought and afforded a special consideration. They can perform
an especially valuable role in shaping public attitudes around such controversial
issues as AIDS.
There is the need to develop strategies for changing social attitudes and norms
to support the adoption of behavior that will slow or halt the spread of infection.
Social norms can be a powerful force in constraining certain practices. The need
for the acceptance and approval of others is an important motive in shaping
behavior. Peer social pressure is the most compelling force for modification of
life style of adolescents in particular.
Sex has always been considered a private act. Now, however, we are compelled
to recognize that it can sometimes have public consequences. We can no longer
afford to assert the position that what someone else does sexually is solely his
own business. We must acknowledge that we have a vested interest in employing
positive social sanctions to encourage people to conduct themselves in a way that
will contribute to the control of the epidemic. We have to create a social environ-
ment in which abstinence is a positively sanctioned option. For those individuals
who choose to engage in intimate sexual relations, we must confer social approval
36

on those who behave in a sexually responsible way. People must come to regard
the use of condoms as a normative expectation.
At this time, we must depend on the schools to educate children about AIDS,
STDs, and drug use. To pretend that we can rely on parents is really to abrogate
our responsibility and to know this may leave many children unprepared to protect
themselves against these threats.
There are no easy answers to the problem of educating the public about AIDS.
While there is some base of knowledge and experience to guide us, the diffrcul-
ties that confront us are formidable. For example, the popular perception that
AIDS remains a "medical mystery" and that there is disagreement even among
the supposed experts on some matters greatly complicates the educational task.
When available scientific evidence is regarded as indeterminant or provisional,
its power to influence behavior is likely to be significantly diminished.
31

LEGAL ISSUES SURROUNDING MEDICAL CARE,
TREATMENT, AND RESEARCH OF CHILDREN
Harold Ginzburg, M.D., J.D., M.P.H.
Introduction
The ethical and legal issues surrounding informed consent and the individual
right of privacy in the care and treatment of minors and in their participation
in research protocols thus far are not unique to those infected with HIV. We can
apply precedents derived from previous decisions. These form a base from which
to build ethical and legal criteria to manage issues created by the AIDS epidemic,
some of which may now be unforeseeable.
The Right to Knowledge: Informed Consent
Informed consent is a merger of the sharing of knowledge and the receipt of
permission to proceed with the therapeutic or research intervention; informed
consent is educated consent. Obtaining such consent from a competent adult is
significantly different from obtaining consent for a minor or incompetent adult.
A clinician or clinical investigator should seek informed consent only under
circumstances that provide the prospective patient or research subject or their
respective legal representatives with sufficient opportunity to consider whether
or not to participate in the treatment or research. The decision-making process
should be free of the possibility of coercion or undue influence. The information
provided by the health care professional must be in language that the patient or
research subject can be expected to understand. No informed consent, either oral
or written, may include any exculpatory language through which the subject or
representative is made to waive or appear to waive any of the subject's legal rights,
or releases or appears to release the investigator, the sponsor, the institution, or
its agents from liability or negligence.
Informed consent has become a structured and formal process; a written docu-
ment is prepared by the medical institution which explains the proposed medical
treatment or medical research. The basic legal tenet of modem informed consent
is over 70 years old. Justice Cardozo stated that:
"Every human being of adult years and sound mind has a right to determine
what shall be done with his own body; and a surgeon who performs an oper-
ation without his patient's consent commits an assault and battery for which
he is liable in damages. . . [A person] is considered to be master of his own
body, and he may, if he be of sound mind, expressly prohibit the perfor-
mance of life-saving surgery or other medical treatment. . . The law does
not promote [a physician] to substitute his own judgement for that of the
patient."
The American Hospital Association (AHA) has promulgated "A Patient's Bill
of Rights" which states in part: "The patient has the right to receive from his physi-
cian information necessary to give informed consent prior to the start of any proce-
dure and/or treatment" and "The patient has the right to be advised if the hospital
proposes to engage in or perform human experimentation affecting his care or
treatment. The patient has the right to refuse to participate in such research
projects." Another policy statement of the AHA deals with collaborative (physi-
38

cian and patient or research subject) decision-making as the basis for informed
consent. The need for essential information to be present in the language familiar
to the patient (or his parent or guardian) and the need for formal documentation
of the presentation of such information have resulted in lengthy informed consent
forms that are specific to the condition being treated. Gone are the "blanket"
informed consent forms hospitals have used in the past.
The medical and legal (professional) communities have long held that neonates
and young children are not able to give meaningful consent for medical care and
treatment. Parents are presumed to be in the best position to speak the mind of
the child under the substituted judgment theory. Thus, parents or court-appointed
legal guardians may give legally binding permission for children to receive medical
treatments and also to become participants in research protocols. Few would argue
about the appropriateness of the parent or guardian being the responsible person
for authorizing medical treatment for their child or ward. Enrolling a child in
a medical research protocol, however, is a more complex issue. Although the
potential benefits of participation in research protocols (extended life or an
improved quality of life) may often be substantial, many of these research protocols
also may present substantial risks to the child. What are the decision-making
processes that will maximize the potential benefits of medical science to the non-
consenting child while protecting his or her fundamental rights?
7he Right ro Privacy
The right to privacy is a fundamental constitutional right; this right may be
overridden only by the demonstration of a compelling State interest. While minors
are legally presumed not to be able to give informed consent or withhold consent
for their medical care and treatment [in most jurisdictions this is an "irrebuttable"
presumption (i.e., it cannot be successfully challenged in a court of law)], the
parens patriae doctrine, the doctrine of informed consent in emergencies, the
"Infant Doe" regulations of the United States Department of Health and Human
Services, and numerous cases where a court-appointed guardianship is created
to permit the treatment of a minor over the objections of the parent(s) (e.g.,
Jehovah's Witness' blood transfusion cases) - all support the general presumption
that medical care and treatment should be provided to minors. Adults do have
a right to refuse treatment, even if it will lead to their demise; they do not have
the right to extend their personal beliefs to their children when the outcome of
such an imposition is irreversible.
The minor's personal right of privacy has been invoked when the guardians
or parents, after determining that the minor is terminally ill and medical care
offers no real hope of restoring health, have declined treatment. Historically,
refusing necessary and life-saving treatment has constituted child abuse. In such
circumstances the court may intervene, in parens patriae, to act as the general
guardian, granting consent for the initiation of medical treatment. The court gener-
ally will not intervene in this role to grant consent for the initiation of an
experimental medical treatment.
The final regulations of the Department of Health and Human Services to imple-
ment the Child Abuse Amendments of 1984 to the Child Abuse Prevention and
Treatment Act, 42 USC section 5101(a), enacted October 9, 1984, indicate that
medical neglect (failure to provide adequate medical care) and withholding of
medically indicated treatment, in the medical care of infants, are to be based on
"reasonable medical judgment" and not on "quality of life standards." The final
39

rule requires that procedures be developed consistent with State law to obtain
access to medical records and/or other pertinent information when such access
is necessary to assure an appropriate investigation or a report of medical neglect.
The Judicial Council of the American Medical Association states that the deci-
sion whether to exert maximal efforts to sustain life should be the choice of the
parents in consultation with the treating physician. Parental authority should be
respected unless there is convincing evidence to the contrary. There is a substan-
tive consensus on the deliberate withholding of life-saving treatment:
  1) The law will support a decision not to provide treatment that would be
   futile or inhumane; no available treatment or surgical procedure offers
   any hope of survival; heroic efforts would be invasive, traumatic, and
   painful; medical opinion on diagnosis and prognosis is clear and
    unanimous.
  2)  The law will support terminating life-support for a patient whose brain
   has irreversibly ceased to function.
  3)  The law will defer, in matters of honest professional disagreement, to
    well-reasoned medical-ethical decisions which are the result of free and
   open communication among all concerned parties.
The tension develops when, as in HIV infections, there is no acute decision
to be made; the clinical course, though predictable, is not rapid; and the quantity
of pain and suffering cannot be estimated, with any degree of medical certainty,
before it occurs.
The Duty to Warn
Individuals with HIV antibodies have a right to medical confidentiality, but
is it the physician's duty to warn those in foreseeable danger of contracting HIV
from an infected individual? When, and under what circumstances should
individual liberties, such as medical confidentiality, be abridged for the good of
the community? If the female partner has not been notified that her male consort
is seropositive or infected, becomes pregnant and delivers an infected child, is
there liability? And for whom? The physician? The male consort? Both? These
and other questions, basic to the medical care of children with a variety of health
conditions, become all the more difficult when the condition is HIV infection.
40

MANAGEMENT OF THE CHILD WITH HIV
IMPLICATIONS FOR SERVICE DELIVERY
INFECTION:
Mary G. Boland, R.N., M.S.N., C.P.N.P.
Management of the Child with HIV Infection:
Impact on Health Care Services
In areas where HIV infection is epidemic, children with HIV infection and their
families are straining the resources of health care delivery systems and human
services agencies. The child and family have multiple medical, social, and
emotional needs. The need for children to receive day care and attend school
is forcing communities to deal with AIDS-related issues at the local level.
While a small number of children acquire the disease as a result of transfusion
of infected blood and blood products, the majority of infected children acquire
AIDS perinatally. Mothers of these children are infected, and it is not unusual
for both parents and one or more siblings to be infected and ill. Thus, the parents
are confronted by issues regarding their own health status as well as that of the
child. For the most part, children who get this disease and their parents are disen-
franchised. They are not like the gay community, which is able to mobilize itself.
They need health care providers who are not only sensitive to their needs but
knowledgeable regarding the disease, and willing to advocate for the children
and their families.
About 80% of the children come from a home where one or both parents have
a history of drug abuse. Because of problems related to drug use, many families
are already receiving assistance from multiple health and human service agencies.
The majority of the families are headed by a single parent, usually the mother,
who is eligible for or receiving public assistance and Medicaid. After the diag-
nosis, many of the children are eligible for and do receive Supplemental Security
Income (SSI) and Medicaid. Prior to the diagnosis, 25% of the families in our
program were known to the child protective services agency (Division of Youth
and Family Services), and many were already in foster care. For most children,
placement occurred because of unwillingness or inability of the mother to care
for the child, rather than as a result of illness in the child. Active intravenous
drug use resulted in inability of the mother to provide food and shelter for the
child. In two families, acute encephalopathic symptoms in the mother required
legal action and placement of the infant with other family members. We have
no boarder babies in our institution and have a good record in terms of iden-
tifying foster homes for our children when we have needed them.
Initially, many of the mothers appeared well. However, as length of follow-up
has increased, more mothers are becoming symptomatic, and several have died.
Progressive physical illness in the mother decreases the energy available for care
of the child. Impending death of a caretaking parent prompts discussions regarding
long term care of the child. While grandparents and other extended family
members frequently accept care of the child, they are dealing with grief due to
loss of the parent and justified fears regarding the death of the child whose care
they assume. In one family where both parents and one of two infected children
have died, the maternal grandmother gave home care for the mother and child,
and is now caring for the surviving infected child and his well siblings.
41

The existence of both progressive and static encephalopathy has been described
in children with HIV infection. Of the 61 children in our program who under-
went comprehensive developmental evaluations, only 5 % tested at an appropriate
age level in all areas. Delays occurred predominantly in speech and language
development and acquisition of motor skills. A few children actually lost achieved
milestones. Parents, however, rarely identified developmental delays as an area
of concern. It is not a population of people who come in saying, "I think my child
is behind; he is not walking; he is not talking." We often find it difficult to get
the message across that there are developmental delays to address in terms of
their child's later education. For instance, we have no child in a handicapped
preschool program at this point. Parents are afraid to enroll their children because
they hope things will get better and because they are afraid of what will happen
to the older sibling when the diagnosis becomes known in the community.
In the infant and child, HIV infection can produce dysfunction of various organ
systems requiring care by multiple pediatric subspecialists. Institutions such as
children's hospitals that provide tertiary level care are best suited to provide the
range of services these children require. To date, the New Jersey Children's
Hospital AIDS Program (CHAP) has provided on-going care for 89 children from
8 1 families. In most families, the child is the index case and identification of other
infected family members occurs after diagnosis of the child. While the goal of
treatment programs is to maintain the child within the home and community, there
are occasions when hospitalization is necessary.
We have an outpatient visit about once or twice a month per child, the majority
for intravenous gamma globulin therapy. Our average of hospitalizations is
between 2 and 3 a year per child, with a range of O-7. The majority of admis-
sions are for pulmonary disease, either Pneumocystis or complications related
to lymphoid interstitial pneumonitis. After that, septic-like episodes and otitis
predominate.
The morbidity and mortality resulting from HIV infection demands an approach
to care that is comprehensive and coordinates care between the hospital, home,
and community. The ill child must be viewed as a member of a family system
that, however weakened or malfunctioning, has its own tasks and stages that are
disrupted by illness in the family members. HIV infection is a life threatening
but chronic process that has the potential to destroy an entire family.
We have developed a child-centered, but family-focussed, program to treat the
illness and its symptoms while attempting to prevent further disruption of the
family unit. We have adopted many of the concepts related to the chronic child-
hood illness model, because much of it applies to children with AIDS. Despite
the pessimistic statistics, they are living longer. We have several children in our
program who were infected from birth, sick as infants, and are now school age
and in school. Our oldest perinatally infected child is eight.
42

HABlLlTklON
SERVICES
Figure 1.
The need to collect epidemiological data, the multiple health and developmental
problems resulting from infection, and the implementation of drug treatment trials
as more antiviral agents become available-all require that programs regionalize
services to cover a contiguous but wide geographical area. These programs must
be multidisciplinary and utilize physicians, nurses, nutritionists, social workers,
and developmental specialists.
Health care providers in the acute setting must be willing to reach out and form
innovative partnerships with the various agencies providing service to these chil-
dren and their families. These types of model programs can provide direct services,
including collaborative case management with agencies in the child's community.
Nursing Services
Table 1. Children's Hospital AIDS Program
o Coordination of Care and Service
o Ongoing Assessment of Parental Health and Coping Ability
o Identification of Resources
o Collaboration with Other Disciplines
o Advocacy in the Health Care Setting and Community
Social Semites
o Assessment of Family System
o Ongoing Counseling for Child and Family
o Support Groups for Families
o Assistance to Families in Navigating the Bureaucracy of Social Agencies
o Collaboration with Other Disciplines
In addition, the expertise of program staff can be utilized to provide outreach
education to health care providers, as well as to advocate for the child and family
within the community.
43

CURRENT DEVELOPMENTS AND FUTURE PROSPECTS
FOR AIDS VACCINES
Gerald V. Quinnan, Jr., M.D.
Prevention of infection from human immunodeficiency virus (HJV) is dependent
on avoidance of exposure and the successful application of measures which prevent
transmission. The availability of a safe and effective vaccine would be an extremely
valuable adjunct to existing preventive measures. Once HIV infection occurs,
it persists for life. And even with effective antiviral therapy, there may be a life-
long risk of developing AIDS. Primary prevention is, therefore, an essential
objective.
Technological advances occurring over the past decade make many approaches
to vaccine development potentially feasible. Recombinant DNA techniques have
been used to produce viral proteins in E. coli, yeast, insect cells, and mammalian
cells. Recombinant live viruses, including vaccinia and adenoviruses, have been
constructed that express HIV genes in cell culture and, in the former case, in
animals. Synthetic peptides homologous to amino acid sequences of proteins of
HIV have been prepared and shown to induce antibodies. Antiidiotype monoclonal
antibodies offer another approach under study. HIV-specific immune globulin
is under development for use in passive immunization. It is indeed fortunate that
the technology exists to make these products so quickly. However, many substan-
tial difficulties remain, including definition of appropriate antigens for use in
vaccines and development of methods for demonstrating efficacy.
Most efforts at vaccine development have focused on HIV envelope antigen
as the principal immunogen. Both the external gp 120 and transmembrane gp
4 1, as well as the complete gp160 envelope proteins, have been included in candi-
date vaccines. Envelope antigen is capable of inducing neutralizing antibodies
and can serve as a target antigen for antibody-dependent cell-mediated cytotoxicity
and cytotoxic T cells. These immune responses may be crucial for protective
immunity. Envelope antigen appears to be important in animal retrovirus
immunity. Genetic variation of envelope antigen is a concern, but human
neutralizing antibodies are often broadly reactive. The use of HIV core antigen
as vaccine is also under study.
Tvue
Table 1. Candidate AIDS Vaccines
     Antigen
Source
Subunit
Recombinant
DNA-Derived
Envelope
Envelope
Virus
E. Coli
Yeast
Mammalian Cells
Insect Cells
Live Virus
Vectors
Envelope
Vaccinia
Adenovirus
Heroes Simulex Virus
Synthetic Peptides
Envelope
Core Antigen
Solid Phase Synthesis
Antiidiotype
Antibodies
Envelope
Monoclonal
Antibodies
HN Immune
Globulin
All                    Plasma
Inactivated
AI1                    Virus

Preclinical evaluation of candidate vaccines has involved immunization of a
variety of animal species. Neutralizing antibodies have been induced to variable
degrees depending on the product and the species. Studies in primates have been
considered essential. Chimpanzees are the only animal species which can be
infected consistently with HIV. The possibility of using chimpanzees as a model
for demonstrating effectiveness of candidate vaccines is still under study. It does
not appear that chimpanzees develop AIDS when infected, and the relevance of
high-dose intravenous challenge to prevention of human infection is unclear.
Promising preclinical data indicate that-even though immunity in animals hasn't
been established-clinical studies will likely begin soon.
Clinical studies of AIDS vaccines will occur in phases. The first studies, referred
to as phases 1 and 2, will consist of initial evaluations of safety and immuno-
genic&y and definition of optimum immunizing regimens. The complexity of these
studies may vary, depending on the product. Evaluation of safety may be more
difficult for recombinant vaccinia viruses than for purified proteins. Single doses
of some vaccines may be fully immunogenic, while multiple doses administered
at intervals over several months may be required for others. The results obtained
from animal models and phase 1 and 2 clinical trials will have to provide a basis
for decisions regarding which candidate vaccines should be entered into expanded
trials.
Definitive clinical trials of safety and efficacy are referred to as phase 3 studies.
The size, duration, and complexity of these studies depend on a number of factors.
A particularly difficult issue is the question of what the principle objectives of
efficacy studies will be. If vaccines prevent infection, the phase 3 studies will
be relatively straightforward. On the other hand, if transient or even persistent
infection occurs after vaccination, without progression of infection to AIDS, the
phase 3 studies will require large numbers of volunteers, will take a relatively
long time, and will be complex. Feline leukemia virus vaccine is an example of
one that prevents disease without preventing persistent infection. The goal, after
all, is disease prevention.
Regardless of what level of efficacy is observed, there are many variables that
must be addressed during phase 3 studies. Vaccine efficacy must be addressed
in relation to each mechanism of transmission, geographic location, and strain
variability. Efficacy for gay men, drug addicts, heterosexual partners, and
newborns may differ. It is desirable that multiple safe and effective vaccines
become available. Phase 3 of vaccine development is likely to be a multiyear
endeavor involving many candidate vaccines, people of all ages in all continents,
and people in all risk groups.
Table 2. Concerns to be Addressed in Phase 3 Trials of AIDS Vaccines
              Safety
              Elcacy
             Transmissability
               Strain Variation
          Geographic Variability
           Modes of Transmission
            Multiple Vaccines
45

Children represent important and varied target populations for study of vaccine
efficacy. Several approaches might be used to prevent infection in newborns.
Table 3. Potential Methods of Interruption of HIV Transmission to Neonates by Vaccination
                   Immunization of at-risk males
                  immunization of at-risk females
                Infected Spouse
                     Other
                  Immunization of Newborn
                Ig o Vaccine
Vaccination of women at risk of infection, such as prostitutes, intravenous drug
abusers, and other women partners of infected men may reduce the rate of trans-
mission to newborns. It is not known how often neonatal infections result from
transmission of virus at or soon after birth. Those infections which do not occur
in utero may be preventable by intervention at birth, perhaps through a combina-
tion of vaccine and immune globulin. An important feature of vaccine efficacy
trials in newborns is the relatively short incubation period compared to adults.
It may be possible to demonstrate disease prevention in newborns more quickly
than in older target populations. Fortunately, HIV transmission to children does
not occur readily in the family setting. It must be remembered, however, that
sexual activity, including homosexual activity, often begins in childhood.
The process of demonstrating vaccine safety and efficacy will be further compli-
cated by related concerns. Target populations for efficacy studies will be people
at high risk of infection. It will be necessary to continue to develop methods for
prevention in these groups in parallel with clinical trials.
Coverage
80%
90%
95%
Table 4. Potential Impact of AIDS Vaccines          Infections
        Efficacy                    Prevented
         80%                       44%
         90%                      81%
         95%                      90%
Practical aspects, such as health care and legal concerns, are also at issue. These
related problems will have an effect on the time required to complete efficacy
studies. Furthermore, it cannot be assumed that the first generation of candidate
AIDS vaccines will be found to be safe and effective. Already, potential approaches
to second generation products are being considered and evaluated.
It is impossible to predict exactly when an AIDS vaccine will become gener-
ally available. It is certain that the development of an AIDS vaccine will be the
best planned and coordinated national and international effort at vaccine develop-
ment that has ever occurred.
46

The AIDS Virus: Developing a Vaccine
Once in the body, the AIDS wrus provokes productlon of a range of antIbodIes that battle it. These do
not necessanly protect rnfected people from developrng AIDS. But sctenbs1s hope Ihat If a vaccine can
Induce producbon 01 certam anbbodles in advance. mvaslon by the AIDS wus could be warded off.
Sclentlsts are trymg to locate subunits of the wrus that. when infected II-I the body, WIII Stimulate
producbon of protecttve anhbodles.
to molecular weight. whtch
scientrsts label differently.
unknown.
everae transcriptase
-  n enzyme the wrus uses 10 take
      over cells
The Current Search
Some expenmental vaccines use only GP-120. others use combmatlons of GP-120 and GP-41 while
another uses a synthebc version of part of P-l 7 Some experts propose usmg the enbre kllled vvus.
but others fear the poss!bMy that some particles could remam alIve and cause dfsease.
The Next SZeps
Experimental vaccmes are bemg injected mto anlmafs to see whii types of anttibodies are produced.
Since each animal spectes responds differently and animals do not develop AIDS. these studies
cannot reveal whether a vaccme would prevent disease.
The next step is to inject promising vaccines tnto s.maEl numbers of humans to determine safety and
the range of antIbodies that are produced. At least one French scientist has already done this and
American teams ptan to soon.
If tests indicate that a vaccrne is safe and stimulates production d desirad antibodies, complex. farge-
scale human trra~s will be stafted to determtne whether it actual& protects against AIDS. a process that
will take many years.
Once safety and etlicacy are determined, a vaccine can be vMely dtstrlbuted.
Copyrighp1987 by the New York Times Company. Reprinted by permission
47

A MOTHER'S VIEWPOINT
Mrs. Helen Kushnick
On 13 October 1983, my three-year-old son, Samuel Jared Kushnick, died as
a result of Acquired Immune Deficiency Syndrome. After birth, he received twenty
blood transfusions from thirteen separate donors in the neonatal unit of a hospital
in Los Angeles, California.
Sam's death devastated our family, including his twin sister. Sara. Sam was
not the first, but the fourth, premature male to die in Los Angeles during a six-
month period, as a result of blood-transfusion-related AIDS. The first was in
February 1983, the second in April, the third in June.
When my son died, pediatric AIDS was not considered a disease. I was told
that our son's death would not be counted as an AIDS fatality because he hadn't
reached the age of five. My husband fought with the hospital administrators,
including the head of the blood bank, for 45 minutes after Sam died to have AIDS
listed on his death certificate as the cause of his death. What we didn't know was
that once the mortuary saw AIDS as the cause of death, they refused to dress
his body for burial. The insurance company that provided our medical coverage
tried to claim a "pre-existing" condition so that they wouldn't have to pay the
$94,000 in medical costs for Sam's 19-day final hospital stay. For six months
after he died, I received bills addressed to him on an almost daily basis. They
lost. They paid. Then they cancelled our policy.
The first official statistics out of the Centers for Disease Control were published
in November 1984. Seventy-two pediatric cases had been recorded. There are
now 456 recorded cases of pediatric AIDS, and the pediatric ARC cases are not
counted in these statistics.
During Sam's illness, our daughter was ostracized and rejected by a segment
of our well-educated, affluent Beverly Hills community. Lack of public aware-
ness of the correct facts concerning the transmission of AIDS caused these people
to panic and to force nursery school administrators to expel Sara for fear she
could contaminate the other children.
Even after the school and parents had been assured by leading pediatric
immunologists and the Los Angeles County Health Department that Sara was
perfectly healthy and that AIDS was not communicable by casual contact, the
public hysteria persisted, and we were forced to place Sara in another school.
Sara then started kindergarten in a public school. Our applications for private
schools had been rejected. Although she had had the required medical examina-
tion and inoculations prior to her admission, I was called by the principal and
asked for an additional letter from her doctor stating that she was healthy. The
school had received a number of calls from concerned parents, even though my
daughter was exceptionally healthy and more than two years had passed since
her brother's death.
In 1983, my family's decision to go public with our story seemed courageous.
To us, it was simply a question of not having a choice. It was clear to us then
that AIDS was not a homosexual disease, but a virus.
In my conversations with officials at the Centers for Disease Control in 1984,
it was obvious that the number of young victims of AIDS would be growing each
48

year. Yet the cities have not come very far in the care and education of these
children.
Let me tell you about my friend whom I'm going to call `Mrs. Smith." She
is black and a single parent. Her three-year-old son also contracted ALDS through
a blood transfusion. She has a daughter six years of age. She works as a teacher's
aide. She tells no one that her son has AIDS because she doesn't feel she could
fight the discrimination and isolation of herself and her daughter were the
facts known.
The most horrendous part of this disease is fear and rejection. It is hard enough
for an adult to cope with and impossible to explain to a child. This is the end
result of our lack of education through proper channels. Until we find a vaccine
or cure, the only way to stop the spread of AIDS is through education. We need
effective educational programs, designed under the auspices of the Surgeon
General, in every city and State in this nation-regardless of how few AIDS cases
are statistically counted. As we know, the statistics have been wrong, and ARC
cases aren't even being counted. The public must become comfortable with the
knowledge that quarantine is not the answer to preventing the spread of AIDS.
Educarion is. And not ufer a child with AIDS is admitted to school, but before.
The citizens and physicians, practicing and academic, are still not being correctly
informed about AIDS. It is not appropriate that both the public and physicians
receive most of their medical information through the news media, which has
been the case with the AIDS crisis. The majority of the general public does not
understand the difference between a specific test for a virus and an antibody test.
While there are now only a handful of post-March, 1985, blood-transfusion
AIDS cases, these will surely grow. The same system existing when my son was
infected is still in place. Any physician will tell you that blood is a dangerous
drug and there is still no standard of care across this nation for blood-transfusion
procedures in neonatal units. Yet the population at greatest risk for blood-
transfusion AIDS continues to be the children, as the increased cases are
showing us.
Most of the local school boards haven't even addressed the issue yet. They wait
for crisis situations and then throw the child out of school while they figure out
what to do. Shouldn't our citizens be able to go to their government for facts?
Aren't the parents of school-age children entitled to receive their facts from the
Board of Education?
Government agencies have not effectively utilized educational media, such as
television and radio. As a result, the news media has reported its own version
of events, which in some instances has been sensational, inaccurate, and has
provided little public health information.
And what of the mothers like "Mrs. Smith"? Isn't she entitled to an effective
support group? Having a critically ill child is a nightmare, one I hope none of
you will ever have to face. The one thing you need most is support.
Statistics show that the highest percentage of pediatric AIDS cases in the years
to come will be from IV-drug-user mothers. These children will, in all likelihood,
be abandoned in our hospitals. Who will pay for their care? Must these children
be abandoned to live in hospitals because there is no residence facility to send
them to while a foster home is found? Must the families of children cared for
in their own homes be forced underground?
Any facility that receives government funding should not be allowed to
discriminate against these AIDS victims.
49

Response on a Federal and city level to the magnitude of pediatric AIDS has
been extremely slow. Please, let us stop dragging our feet, and let us act respon-
sibly now.
During World War II the Federal government with our allies was able to bring
together the best scientific minds in the world to develop the atomic bomb. Well,
we are at war now and our allies are the world health community. We need to
bring together the best scientific minds in the world-not just in our country-to
fight this killer. We need the best researchers, clinicians, and scientists under
the same roof on a daily basis. We cannot continue to ask these people to spend
months filling out grant applications to fund their work.
Three years ago I made a promise to my daughter. She became frightened one
evening that she couldn't remember Sam's voice-afraid that she was beginning
to forget him. I promised her then that her father and I would not let Sam be
forgotten. You see, we hear his voice all the time.

WORK GROUP
  RECOMMENDATIONS
INTRODUCTION TO WORK GROUPS
The participants invited to the Workshop were assigned to ten Work Groups
composed of approximately twenty persons. Group members were selected to
reflect a broad range of background, expertise. and diversity of opinion. The
Planning Committee provided the leaders and recorders in advance a set of charges
herein summarized as "Definition of the Issues." With these issues as a starting
point, the groups met in closed session for ten hours over a two-day period. Discus-
sion was spirited. In most instances, consensus about current knowledge was
reached, and recommendations were made for future action.
In a closing plenary session each group leader presented a summary of the
group's deliberations to the Surgeon General. A condensation of these follows
under "Response of the Work Group." The Surgeon General responded to these
presentations in the conference's final hour.
WORK GROUP I: NATURAL HISTORY OF PEDIATRIC HIV
INFECTION, INCLUDING DEVELOPMENTAL ISSUES AND
PROGNOSIS
DEFINITION OF THE ISSUES:
The clinical presentations of HIV infection in children and infants, whether
acquired perinatally or from blood or blood products, are quite variable. As a
result, there has been inadequate definition and classification of the clinical course
and prognosis, particularly with relation to differentiation of AIDS-Related-
Complex (ARC) and progression to Acquired Immunodeficiency Syndrome
(AIDS), Central Nervous System (CNS) disease, and death. Populations followed
at different centers vary in terms of socio-economic background, clinical presen-
tation, and medical management.
RESPONSE OF THE WORK GROUP:
The mechanisms of transmission of HIV from mother to offspring are
unknown. Intrauterine transmission is well-documented, but the time at which
intrauterine transmission occurs, the importance of evidence of additional maternal
infection, the factors which influence risk of transmission, and the factors that
51

modify outcome of transmission are not understood. Available data to date have
not shown a clear correlation between clinical status of the mother and the effect
of HIV exposure to the infant. Some observations suggest that mothers in the
late stages of AIDS may not infect their infants to the same degree as mothers
who are asymptomatic or less severely involved.
In general, infants who are symptomatic early in life following intrauterine
infection or from infection after transfusions in the neonatal period will have more
devastating courses than those children who are asymptomatic in early infancy
or those who acquire their infection through later transfusion or through adminis-
tration of blood factors.
Laboratory abnormalities in pediatric HIV infection are now well recognized,
but their significance in prognostic terms will be determined only through prospec-
tive longitudinal study. B-cell dysfunction may appear early and is associated with
hypergammaglobulinemia. The development of lymphopenia, hypogamma-
globulinemia, T-cell mitogen abnormalities, depression of both T4 and T8 cells,
and loss of antibody to P24 (core antigen) suggest disease progression and prob-
ably are poor prognostic signs. In addition, there is a group of patients who are
seronegative but have positive cultures; the significance of these findings is unclear.
Developmental issues are a major concern in pediatric HIV infection. Patterns
include the infants who fail to progress in normal developmental sequence and
those who develop normally initially but then either reach a plateau or deteri-
orate with loss of milestones. Primary CNS infection due to direct HIV invasion
occurs in children as in adults. It can be difficult to distinguish the cause of develop-
mental delay which may be secondary to sociocultural factors or recurrent oppor-
tunistic infections or from primary invasion of the CNS.
  Whereas much has been learned about the clinical manifestations of HIV in
infants and children, our knowledge is biased toward the common and severe
expressions of the infection. Broad based study is required to obtain wider
perspective.
RECOMMENDATIONS:
1) Long-term, controlled, prospective collaborative studies of the natural
history of HIV, including assessment of clinical course and laboratory findings
in children, are required now as a basis for development of effective means for
prevention, diagnosis, and treatment. Appropriate government funding agencies
should assist and even require development of common and shared protocols.
Studies should include, but not be limited to: a) the roles of co-factors such as
Epstein-Barr virus and other herpes viruses; b) strain differences in HIV and their
relationship to clinical manifestations; c) distinctions between lymphoprolifera-
tive and lymphoablative disease with opportunistic infection; d) the prognostic
significance of low incidence complications in pediatric HIV, such as crypto-
sporidiosis, Mycobacterium avium-intracellulare, and Kaposi's sarcoma; e) anal-
ysis of cerebrospinal fluid, including specific antibodies, cell mediated immunity,
and antigens; and f) the roles of psychosocial and nutritional factors in the under-
privileged populations which are at highest risk.
2) Denominator data are essential. Mandatory screening of all newborns is
not recommended. Instead, limited screening studies, building on the existing
neonatal screening programs for metabolic disease and sickle cell disease, should
be implemented to help define the geographic seroprevalence of HIV infection.
52

3) Programs should be funded to explore ways to provide broad prenatal
and neonatal testing for identification of HIV infected individuals. The programs
should be initiated with sensitivity to the special dimension of HIV infection, espe-
cially regarding privacy and informed consent issues.
4) High priority should be given to development and evaluation of labora-
tory tests for identification of HIV infection in newborn and young infants. Partic-
ular attention should be given to longitudinal study of cerebrospinal fluid. The
special vulnerability of the newborn, the irreversibility of brain damage caused
by HIV, and the potential for benefit from early treatment (including the treat-
ment of the asymptomatic HIV infected infant), give urgency to the need for sensi-
tive, specific, and practical tests.
5) The CDC classification of pediatric HIV infection should be used to insure
that all children with HIV infection are eligible for needed services not limited
by statutory or regulatory definitions of AIDS. Continual updating of the clas-
sification can result in a useful transition document for education of health profes-
sionals and the general public about HIV infection.
6) Study of pathologic specimens from pregnant women and from children
with HIV infection can make major contributions to understanding the natural
history. These studies should include specimens of placenta. chorionic villi.
products of conception, amniotic fluid, and cervical secretions. Professional educa-
tion programs, based on existing successful models, should be created to assist
in obtaining and studying such specimens. Consultational assistance by authorita-
tive pathologists and clinicians should be included as part of the program.
7) Adolescence is a time of special hazard, but can be the focus of special
opportunity for prevention of HIV infection. Recognizing the complexity of this
problem, we recommend the prompt convening of a group to focus on the specific
problems of HIV infection in adolescents.
WORK GROUP II: THE TREATMENT OF CHILDREN WITH
HIV INFECTION
DEFINITION OF THE ISSUES:
The status of medical therapies for HIV infection, their indications and timing,
their complications, and their sequellae are unclear. A number of drugs have been
proposed for use in various stages of HIV infection, but their indications have
not been developed for pediatric cases. The current therapies for secondary infec-
tions, such as pneumocystosis, cryptosporidiosis, and atypical mycobacterial
disease, are generally unsatisfactory. Appropriate indications, dosages, and timing
of antibiotics and gamma globulin need to be defined. Newer therapies, such as
immunomodulators, may eventually have a place in pediatric management. Mean-
53

while, HIV infected children, though often immunosuppressed. will face the usual
pediatric problems of immunization against childhood diseases and management
of viral infections such as varicella and measles.
RESPONSE OF THE WORK GROUP:
It is imperative to determine the most beneficial therapies for children with
HIV infection carefully and as quickly as possible. Children have the right to
participate and must be included in therapeutic trials, so that appropriate treat-
ment can be offered them.
There must be formed a well-funded, single collaborative pediatric treatment
group, using the existing AIDS treatment and evaluation units as a foundation
and incorporating the pending clinical studies groups. Our group recommends
the designation of an executive director to assure efficient and rapid formulation
of well-designed protocols for optimum utilization in the known HIV pediatric
population. Our group also suggests that a commitment of a minimum of 12 million
dollars annually to pediatric AIDS therapy is necessary for implementation of
these recommendations.
Protocols for collaborative controlled Phase II trials of drugs such as
azidothymidine (AZT) and ribavirin (Virazole) in children with AIDS must be
ready for initiation as soon as the pharmacokinetic data from the current Phase I
studies become available. Placebo-controlled trials in HIV-infected children with
AIDS-Related-Complex (ARC) and in asymptomatic children must be designed
in parallel with the above studies and implemented when appropriate data have
accrued. The collaborative group also should begin now to design treatment trials
in seropositive pregnant women and of infants born of such pregnancies to attempt
prevention or, at least, intervention in the course of perinatally acquired infec-
tion. Natural history data and carefully evaluated diagnostic tests will facilitate
the implementation of such studies.
RECOMMENDATIONS:
1) A controlled trial of intravenous gamma globulin therapy in conjunction
with specific anti-HIV therapy would be useful but should not be done at the
expense of decreasing available patient populations for the more important specific
anti-HIV trials.
2) At a later time, specific use of immunomodulators in conjunction with
specific antiviral therapy can be considered, but available data suggest a low
priority currently.
3) Pneumocystis carinii pneumonia (PCP) is currently treated with
trimethoprim-sulfamethoxazole and/or pentamidine. Evaluation is needed of
aerosolized pentamidine, newer agents of the dihydrofolate reductase antagonist
class, and of prophylactic therapy.
4) Lymphoid interstitial pneumonia (LIP) is a major problem. Combined
therapy with steroids and specific antiviral agents needs evaluation.
5) Candida infections, including esophagitis, require systemic therapies,
including amphotericin and imidazoles.
6) Cytomegalic virus (CMV) infections are difficult to manage, but new
acyclovir analogs (gancyclovir) warrant Phase I and II evaluation. Children who
are HIV-positive but CMV-negative should receive CMV-negative blood if trans-
fusion is indicated.
54

7) Cryptosporidiosis and atypical mycobacterial infections are relatively infre-
quent in children. No effective therapy currently exists for them. Efforts should
be directed toward finding treatment.
8) We support the current Advisory Committee of Immunization Practices
(ACIP) recommendations for immunization of HIV-positive children. The use
of age-appropriate inactivated antigens, such as DPT, pneumococcal, Hemophilus
influenzae B, and influenza, is potentially beneficial in those HIV-positive chil-
dren capable of responding to the antigens. These are without harmful effects.
Administration of attenuated measles vaccine is recommended for asymptomatic
HIV-positive children. It appears to be without hazard in this group of patients
and may provide protection against wild measles virus, which is potentially lethal.
Symptomatic HIV-positive children should not receive live virus vaccines. HIV-
positive children exposed to measles should receive gamma globulin. Those
exposed to varicella should receive varicella zoster immune globulin.
9) Management of HIV-infected patients with varicella should include
acyclovir therapy. Patients with varicella, measles, and respiratory syncytial virus
infections are extremely susceptible to bacterial superinfections, such as pneumonia
and sepsis.
10) Indiscriminate use of antibiotics should be discouraged, but well planned
studies of antibiotic prophylaxis would be helpful.
11) Nutrition and growth must be monitored carefully. Enteral tube feeding
and total parenteral nutrition must be maintained appropriately. Irradiated blood,
if available, should be administered when indicated.
12) There is a pressing need for experienced pediatric subspecialists to care
for these children. We strongly support the training of these individuals.
WORK GROUP III: RISK REDUCTION FOR
MATERNAL/FETAL TRANSMISSION
DEFINITION OF THE ISSUES:
The predominant paths of HIV infection transmission from mother to child
are not understood. The effect of pregnancy on the health of the infected mother
is uncertain, as are the effects of the infection on the outcome of pregnancy.
Eighty percent of American children with AIDS are of black or Hispanic
parentage. Their mothers are predominantly of lower socioeconomic status, and
most often are intravenous drug abusers or sexual partners of men in high-risk
categories. Counseling of HIV-infected women, when achievable, must consider
these factors and center on understanding the risk of pregnancy, birth control
methods, informing sex partners, and issues of confidentiality. There are no satis-
factory guidelines for HIV antibody testing of women of child-bearing age with
known risk factors.
55

RESPONSE OF THE WORK GROUP:
We define these general points as background to our recommendations.
a) In a series of "life-points," each offers opportunities for education and
risk reduction. Some of these occur during adolescence or even earlier, some
at the time of premarital and family planning counseling. and some during pre-
conceptional, antepartum, intrapartum and postpartum care.
b) The concept of "parental-fetal" transmission (rather than "maternal-fetal")
emphasizes the role of the male partner in infecting the mother and through her,
the fetus.
c) Adolescents are an especially important target group for risk reduction
efforts. There is a need to design relevant approaches to them, perhaps through
the use of peers and/or popular role model adults.
d) It is important to stress that transmission to the fetus is currently very
strongly linked to inner-city, disadvantaged, minority populations. The connec-
tion between poverty, intravenous drug abuse, and heterosexual transmission
leading to fetal infection underscores the importance of a massive effor, against
the primary problem of substance abuse.
e) The young, drug-addicted, infected prostitute is more at risk for preg-
nancy and fetal infection. North American evidence of transmission of HIV from
prostitutes to "Johns" to their other sexual partners and from bisexual men to heter-
osexual females needs to be determined by thorough epidemiologic investigations.
RECOMMENDATIONS:
1) There should be a vigorous expansion of HIV-antibody testing, always
within a context of confidentiality, voluntary informed consent, and pre- and post-
test counseling. The group sees no current role for mandatory testing or screening
under any circumstances, but counseling and testing should be routinely offered
to all pregnant women as early in pregnancy as possible. For those who have
negative tests, testing should be offered again late in the third trimester, at least
three months after initial testing to allow for important pediatric management and
follow-up.
2) Risk assessment and access to counseling and testing should be widely
available at such points as family planning clinics, sexually transmitted disease
clinics, abortion clinics, drug treatment clinics, and at all health care centers for
women and their sex partners. Major funding investments are urgently needed
for counseling resources, and health professionals must take a much more active
and knowledgeable role.
3) HIV infection status should be part of the medical record. The group was
divided as to whether test results should be in the generally available chart. Strict
confidentiality must be observed, but the information must be available for
appropriate obstetrical and pediatric care. Maternal HIV status is relevant to
newborn care and ideally should be discussed in confidential consultation between
physicians, especially obstetricians and pediatricians. Strong legislative protec-
tion of confidentiality and against discrimination is urgently needed on a State-
by-State basis, and the possibility of Federal legislation should be examined.
Expanded AIDS education is needed by all members of the health-care team.
4) With regard to antibody test outcomes: a) presentation of test results,
whether negative or positive, should be accompanied by counseling regarding

risk-avoidance; b) the seropositive pregnant woman should be provided infor-
mation on the full range of risks to herself and to her offspring, should have access
to the full spectrum of options (including termination of pregnancy) in a nonjudg-
mental, noncoercive context, and should receive the support of health care
providers if she decides to continue her pregnancy; and c) the seropositive non-
pregnant woman should be advised to defer pregnancy. There should be sensi-
tivity to the difficulties faced by many women in avoiding pregnancy.
5) Although definitive evidence for HIV transmission through breast milk
has been lacking, the documented presence of HIV, both within lymphocytes and
in cell-free breast milk, suggests that it is prudent to advise seropositive women
not to breastfeed, especially in North America, where formula feeding is a safe
alternative. Donors of breast milk should be screened for HIV infection.
6) Available risk-reduction modalities, such as use of condoms and use of
sterile syringes and needles for intravenous substance abusers, must be made more
easily accessible.
7) Sperm donated to sperm banks for artificial insemination should be made
as safe as blood donated to blood banks by mandating statutory requirements for
collection and freezing of the sperm.
8) Mandatory premarital HIV antibody testing would not be appropriate and
would probably be ineffective in reducing HIV infection. However, premarital
risk assessment, counseling, and voluntary testing should be encouraged.
WORK GROUP IV: EDUCATIONAL ISSUES FOR CHILDREN
ALREADY INFECTED WITH HIV, INCLUDING DAY CARE
AND SCHOOLING
DEFINITION OF THE ISSUES:
Much confusion and fear cloud the issue of the safest and most effective means
of educating the HIV-infected child. The consternation accompanying associa-
tion with HIV-infected individuals is perhaps most marked with the enrollment
of an infected child in day-care centers and schools. Proper education, confiden-
tiality, and safety for infected children-particularly those who are
immunosuppressed-and their non-infected schoolmates must be considered.
School boards, school principals and directors, teachers, and families need
sensible, realistic guidelines based on the best current knowledge. Resources must
be developed for dissemination and implementation of new information as
reported.
57

RESPONSE OF THE WORK GROUP:
Education of the HIV-infected child should be geared to developmental age.
We considered those under age five as preschoolers and also distinguished toddlers
from three- and four-year-olds. Positive messages about education should be based
on known epidemiology and stage of disease. There are children known to be
HIV-infected yet asymptomatic, those with unrecognized infection, and those ill
with HIV and dying. All of these may be attending school or may be rejected
from school if their medical history were known.
RECOMMENDATIONS:
  1) There is no evidence that HIV is transmitted by normal casual and
nonsexual contact in home, school, day care, or foster care settings. Screening
of children for the presence of HIV antibodies for the purpose of attendance at
day care centers or school is neither warranted nor recommended. Routine
common sense procedures for handling blood and body fluids should be adopted
for everyone. The decision to inform others of HIV infection should only be made
with the consent of the parent and/or guardian. Although it is ideal that someone
in day care or school know that a child is ill, that should not be a prerequisite
for attendance and may not be practical at this time in many communities.
2) Existing Centers for Disease Control (CDC) and American Academy of
Pediatrics (AAP) guidelines are well done and serve as an adequate resource in
most respects. However, the group recommends the following modifications:
  a) If infected toddlers can safely mingle with peers, that should be so stated.
If there is evidence they can transmit HIV infection to each other, that evidence
must be clearly presented. We have not seen any data that toddlers can transmit
HIV infection. CDC comments on the preschool population are somewhat ambig-
uous. CDC should reanalyze data or design new studies if existing data cannot
be brought to support clearer recommendations one way or the other.
b) We do not agree with the Academy's suggestion that an expert panel review
toddler admissions to day care. The child's own physician and parents can make
a reasonable decision. Community school boards and departments of health may
make a panel available if physicians, parents, or teachers request expert advice.
The child does have the right of privacy. Doctors should share data on HIV infec-
tion with others only upon careful consideration of likely community reaction
and with parental consent. This right to privacy extends to a child attending
preschool or day care.
3) The following are our suggested criteria for admission to school. For
children of developmental age three years and up, there is no need for special
school admission criteria. HIV-infected children should be permitted to attend
school unless prevented from doing so by weakness or poor health. For
preschoolers less than age three and for older children developmentally less than
an age three equivalent, we suggest a more positive national position. Hedging
at the national level may lead to fear at the local level. Again, CDC should
reexamine the accumulated data and either make a more positive statement or
quickly gather data about transmission between toddlers.
4) Under ideal circumstances, the teacher or someone in the school should
know the diagnosis and be an active participant in the team caring for the child.
In many communities, however, it may not be possible for the child to attend
school in an unrestricted manner if the diagnosis is known. The child has the

right, therefore, to have the information withheld from the school. The decision
as to whether an immunocompromised child can attend school safely, with the
unavoidable exposures to enteric and respiratory ailments, is best left to his own
physician and caretaker. Schools need to notify all parents about outbreaks of
illnesses such as measles and varicella, which pose a particular threat to
immunocompromised children.
5) Whenever possible, school systems should be prepared ahead of time by
education of staff, parents, and social workers, to accept an HIV-infected child
should one be identified. Current hygienic measures are sufficient in most school
and preschool settings, and handwashing facilities always should be accessible.
If soap and water are sufficient to clear up blood spills, this should be stated in
published guidelines which currently tend to emphasize the need for bleach. Posi-
tive hygienic measures should be clearly stated and adhered to consistently.
  6) Children with HIV infection should share the same curricula as their un-
infected schoolmates, including age-appropriate health and sex education. Coun-
seling regarding sexual behavior for HIV-infected adolescents should focus on
risk reduction and modes of transmission. There must be age-appropriate educa-
tion about AIDS for all children: common sense information about body func-
tions in preschool years; counseling about decision making and developing self
esteem in elementary school; specifics about risk reduction and transmission before
the age when a child begins to experiment with sex and drugs.
7) Use of the antibody test in children must be done with prudence and for
reasonable clinical cause. The group opposes mandatory testing prior to school
attendance.
8) Ultimately, it should become possible for AIDS to be considered with
neither more nor less emotion than other severe illnesses of infancy and child-
hood. Key issues of AIDS epidemiology are poorly understood by most segments
of society. A concerted community educational effort should be undertaken.
Guidance and education programs developed with Federal support should be
directed from national groups to their memberships, including health-care groups,
education and parent groups, and social work groups.
59

WORK GROUP V: THE ROLES OF EPIDEMIOLOGY AND
TRANSMISSION STUDIES IN THE ADVANCEMENT OF
KNOWLEDGE OF PEDIATRIC HIV INFECTION
DEFINITION OF THE ISSUES:
The incidence of congenital HIV transmission is closely related to the spread
of HIV infection among intravenous drug users and their sexual partners, partners
of bisexual men, and-to an increasing degree-among the heterosexual popula-
tion. Other children at risk include: neonates, those with blood dyscrasias who
have received multiple transfusions, hemophiliacs managed with blood products,
children with cardiac anomalies repaired by surgical by-pass, and sexually abused
children. The routes involving vertical (adult-to-child) transmission need proper
quantification. Further studies are needed to provide information and projections
about the course of the epidemic.
RESPONSE OF THE WORK GROUP:
The current national reporting of pediatric AIDS is only a very small reflec-
tion of the total problem of HIV infection in infants and children.
  The current annual number and distribution of HIV-infected women and HIV-
infected infants can be estimated by utilizing available data from area-specific
HIV antibody surveys and by extrapolating from reported AIDS cases in adult
females. Such estimates in early 1987 placed the number of HIV-infected women
at about 100,000. About 70% of these were from minority groups in New York,
New Jersey, and Florida, with 80% of the infections attributed to intravenous
drug use by the infected woman or her sexual partner. By applying published
age, race, and specific fertility rates to this estimate, we calculated that about
3,000 HIV-infected infants may be born annually in the United States. The number
of both infected women and their infants can be expected to increase over the
next several years. However, accurate projections of the rate of increase are not
possible at this time because of major uncertainties in key variables.
Studies in Massachusetts and New York show prevalence of HIV antibody
in pregnant women ranging from 2 % up to 6 % . The Massachusetts Department
of Health has developed an anonymous, confidential screening test using blood
specimens collected on filter paper for newborn metabolic screening. Patient iden-
tification was removed, but race and general geographic area were retained.
Testing of these specimens provided valuable data on the general prevalence and
distribution of HIV-infected women giving birth and their infants. Other States
should consider inaugurating this method so that intensive follow-up and educa-
tional programs can be targeted to the high prevalence areas.
RECOMMENDATIONS:
  1) The majority of our group felt that mandatory premarital testing would
not be effective, but that voluntary testing, with pre- and post-test counseling,
should be offered at family planning clinics, sexually transmitted disease clinics,
and drug abuse treatment programs.
60

2) Insufficient data are available to indicate what proportion of infants may
be infected in utero or at birth, and what maternal factors may be important for
transmission of HIV infection to the offspring. The group recommends convening
a meeting of those investigators involved in current or prospective studies of HIV-
infected pregnant women to develop additional protocols to answer important ques-
tions regarding maternal-fetal transmission.
3) With respect to the possibility of infection by an HIV-infected toddler
to other toddlers in a day care setting, we conclude that if such a transmission
risk exists at all, it would be an exceedingly low one, and that such a non-risk
or low risk would be difficult if not impossible to measure by a prospective
epidemiologic study. However, guidelines and a specific protocol should be devel-
oped by CDC to direct a public health investigation when such is warranted.
  4) Donors of breast milk should be screened in a manner similar to donors
of either blood or body organs. When environmental circumstances are such that
withholding breast milk might be associated with a known increased risk of
morbidity and mortality, breast milk should not be withheld even though there
may be potential incremental risk of HIV transmission from an infected mother
to her infant.
  5) The risk of HIV transmission through blood transfusion in the period before
screening (specifically between 1979 and 1985) appears low enough that routine
recall for testing of children who received blood appears unnecessary. We concur,
however, with the recent CDC recommendations that screening based on
geographic areas and number of units received may be appropriate.
6) HIV testing should not be done routinely on all children admitted to health
care facilities, but it should be performed when there are specific clinical and
epidemiologic indications to suspect HIV infections. Protocols for evaluation of
a child who has been sexually abused should consider the possibility of HIV
transmission.
7) The collection and interpretation of epidemiologic and transmission studies
must be sensitive to different ethnic and cultural groups. The press and general
public must understand that the nature of scientific studies prevent public offi-
cials from implying that an "unlikely" event will "never" occur.
WORK GROUP VI: FAMILY ISSUES, INCLUDING
COUNSELING AND PSYCHOSOCIAL ISSUES
DEFINITION OF THE ISSUES:
The potential for stigmatization complicates the health and social care of the
HIV-infected individual at any age. In particular, school-aged children with HIV
infection become the focus of fears of teachers, classmates, and neighbors. The
result may be ostracism, discrimination, and low self-esteem. Many of these
children are already the victims of drug-abusing parents, paternal bisexuality,
and low socioeconomic status. About 15%, however, became HIV infected by
61

receiving HIV contaminated blood or blood products. Many will not survive to
school age. Counseling of the children and the families of these differing subsets
of patients must necessarily be adapted to the circumstances. Counseling must
aim at providing psychosocial support for families, discussing pregnancy risk,
and reducing high-risk behavior. The demography and social dynamics of HIV
infection should be studied thoroughly to develop effective means of reaching
people at risk, to delineate the obstacles to behavioral change, and to determine
an effective language and style of communication.
RECOMMENDATIONS:
  1) We suggest that a continuum of services be assured to all affected commu-
nities by the Federal government, working through State and community facili-
ties. These services must range from fundamental necessities, such as food, shelter,
transportation, and mainstream education to the critical needs for emotional and
other psychosocial support services. We believe that it is a Federal responsibility
to provide a structure for leadership and funding for local planning and program
development. The organization, development, and implementation of psychosocial
services must be considered of equal importance to medical services with a
corresponding allocation of funds.
2) Direct services to families with HIV-infected children should be planned,
organized, and implemented by a community-based, child-centered multidiscipli-
nary team, consisting of representation from health and social service special-
ties, augmented by community service representatives and family members.
Services should be geared to family assessment in its own ethnic and cultural
context with consideration for its religious orientation and spiritual needs.
3) Throughout the process of working with a family affected by pediatric
AIDS, a consistent counseling relationship establishing respect and mutual trust
must be maintained. Professionals must be aware of and sensitive to cultural issues,
sexual and reproductive mores, and psychosocial aspects of drug abuse. Psycho-
social personnel must be recruited from appropriate minority groups with bilingual
counseling available as needed. All involved Federal and State agencies should
establish training of involved personnel as an immediate priority.
4) We urge expanded access to drug treatment services and increased funding
for such services to improve quality and to remove financial barriers.
5) It is essential that families have a clear understanding of proposed medical
and social interventions given in their own language, and that they be afforded
the opportunity for a truly informed consent. Although family involvement should
and must be encouraged, adolescents must be provided the opportunity to obtain
services independent of parental knowledge and consent.
6) It is critical that minority representation be included at policy-making
levels. We recommend that the Surgeon General take the lead in providing a forum
of prominent black and HispanicLatino leaders, especially physicians, to be heard
on a national level.
7) Planning for research in the areas of psychosocial interventions, health
care service delivery, and services evaluation should include local community
representation, with the Federal government assuming a leadership role in the
dissemination of acquired information.
8) CDC should revise guidelines on education and foster care and on perinatal
transmission to incorporate the psychosocial, cultural, and ethnic factors discussed
above.
62

9) Cultural, racial, ethnic, gender, and psychosocial issues should be specif-
ically addressed at all future national conferences on HIV infection, as they have
been at this one. This is necessary for a broadening of the understanding and
communication of all professionals working in the field.
WORK GROUP VII: HEALTH INFORMATION ISSUES AND
THE ROLE OF THE MEDIA
DEFINITION OF THE ISSUES:
The standard print and electronic public media, in concert with profit and
non-profit health information services, are the means by which information about
AIDS is disseminated to the general population. The media must both receive
and transmit accurate information in a responsible manner. This information must
reflect, but not be confined to, current knowledge and epidemiology, natural
history, transmission of the disease by mother to child or by blood and blood
products, treatment, and research in the development of drugs and vaccines. Even
more important, the media are essential for the dissemination of information to
minimize the spread of the disease, including modifications in life style, the under-
standing of high-risk sexual behavior, and the risks of pregnancy for the HIV-
infected mother. Such preventive information must be adapted to reach those
cultural, ethnic, and social groups most at risk. Methods should be developed
for evaluating the effects of health information systems on public knowledge and
habits.
RESPONSE OF THE WORK GROUP:
The group felt that there are certain specific steps that would improve the
effectiveness of communication regarding HIV infections and AIDS. First, it was
felt to be essential that ambiguities and imprecision be avoided in terminology
and jargon. Meaningless euphemisms, such as "the exchange of bodily fluids,"
should be abandoned in favor of clear and explicit language.
Because journalism has unique responsibilities differing from other forms
of mass communication, we have developed separate recommendations for the
news media. The professional journalists on our panel felt it inappropriate for
them to make policy recommendations about subjects which they cover.
63

RECOMMENDATIONS:
  1) Current information campaigns often seem to define risk for AIDS by
membership in specific groups, rather than by high-risk behavior. This approach
serves to increase stigmatization and discrimination and undermines the public's
understanding of health risks. We urge the government to take the lead in helping
to reverse this trend.
2) A panel independent of government and consisting of journalists and other
authorities in the communication field should be convened under the aegis of a
group such as the National Academy of Sciences or the Institute of Medicine.
The panel should include individuals with expertise in communicating with those
target segments of the population for which AIDS is a particular concern. A media
resource guide should be developed by such a panel. This should include, but
not be limited to, such AIDS information sources as research scientists, govern-
ment agencies, legal and civil rights organizations, social service organizations,
and health care associations. Data bases, such as the Scientists' Institute for Public
Information (SIPI) or the Computerized AIDS Information Network (CAIN), are
particularly valuable.
3) This panel should stimulate the development of a style book to address
the use of ambiguous ("sexually active"), judgmental ("promiscuous"), or stig-
matizing ("innocent victims") language. The publications of the panel should be
distributed widely to journalists and to other communicators.
4) The panel also should explore the issues of confidentiality in reporting
of AIDS. These issues must include the needs of journalists for information, the
public's right to know, the right to privacy for persons with AIDS, and the respon-
sibilities of health care providers and social service workers to serve the needs
of their patients and clients.
5) Significant portions of the population, including intravenous drug users,
adolescents, those with language barriers, some homosexuals, and poorer
individuals, are not being reached with the educational messages that are conveyed
through traditionaI media. The techniques of market research should be used to
identify the most effective means of communicating with all parts of the popula-
tion, and alternative communication resources should be explored for the dissemi-
nation of information about AIDS. These should include direct mail, explicit
television public service announcements or educational spots, posters on busses
and subways and at rock concerts, comic books, as well as the integration of
information concerning AIDS and responsible sexual practices into all television
programs, including entertainment. Messages should be targeted for specific
publics, with recognition of linguistic, cultural, societal, and age differences.
6) Specifically, the public and private sector should work in concert to:
a) translate public information programs into appropriate languages, such
as Spanish;
b) improve communication with the black community by assembling an advi-
sory group of black leaders from the community, the clergy, health providers,
and the media;
c) urge Hispanic/Latin0 leaders of the medical profession and electronic
media to take the lead in the education of their communities;
d) enlist black and Hispanic/Latino opinion leaders and role models to deliver
educational messages through appropriate mass media; and
e) disseminate information about HIV risk to intravenous drug users through
urban community and outreach programs.
64

WORK GROUP VIII: MODEL FOR HEALTH CARE OF
CHILDREN WITH HIV INFECTION, INCLUDING BOTH IN-
AND OUT-OF-HOSPITAL CARE
DEFINITION OF THE ISSUES:
The disadvantaged and underserved children most at risk for HIV infection
are also at greater risk for many other diseases and conditions. Their health care
is typically fragmented, episodic, crisis-oriented, and underfinanced. They usually
are denied a relationship with a primary physician who might assume responsi-
bility and accountability for their health. Their care is often complicated by parental
intravenous drug abuse, parental HIV-related infection, homelessness, and aban-
donment. There is a lack of foster-care placements, resulting in prolonged stays
in hospitals, where there is insufficient staff to provide and coordinate multidis-
ciplinary attention. Pediatric units in hospitals that serve large numbers of HIV-
infected individuals are overwhelmed by the medical and social needs of ill and
potentially ill HIV-infected children. Programs which provide coordinated,
community-based care and hospice environment for pediatric HIV-infected patients
are nearly non-existent.
RESPONSE OF THE WORK GROUP:
The development of a model of health care for HIV-infected children demands
that we, who are responsible for their care, face the complexities of poverty,
its resultant social disorganization, and the attendant hopelessness. Pediatric HIV
infection is commonly related either directly or indirectly to intravenous drug
use. Because the resources for the prevention and treatment of drug abuse are
insufficient to meet the needs of this country, we encourage everything possible
to expand treatment and prevention programs dealing with drug abuse.
RECOMMENDATIONS:
1) The Department of Health and Human Services (DHHS) should initiate
efforts to simplify access to existing health, welfare, social, and financial services
for HIV-infected children and their families.
2) Whenever possible, these children should remain with their own fami-
lies. The provision of social and medical supports-including but not limited to
housing, home care, and respite care-will help preserve, as much as possible,
the family unit and reduce the need for foster care. Existing systems for handi-
capped or disabled children must be made accessible to HIV-infected children.
3) When care of the child within the family is not possible, individual foster
care represents the best possible alternative. We suggest increased foster care
funding, along with additional social and practical supports such as day care and
home care, in order to recruit larger numbers of badly needed foster parents.
4) The recommendations for increased supports for the natural family, or
if not possible, for the increased recruitment of foster families will not success-
fully provide care for all HIV-infected children. Innovative nurturing homes for
small numbers of HIV-infected children should be established. In these community-
based homes, children would be cared for by appropriately trained and super-
65

vised caregivers who will bond with and care for the children and, if possible,
their parents.
5) Regionalized, comprehensive medical care programs tailored to regional
needs should be instituted. These should use a multidisciplinary team approach
to provide primary care for HIV-infected children. Services should be provided
with a greater emphasis on location of patients rather than on location of tradi-
tional tertiary care services. Obviously this model will have to be tailored to
individual regions, but must include attention to the education of local health care
providers about clinical and social needs of HIV-infected children and their fami-
lies. At the medical level, these children need a pediatrician with the instincts
of a primary care provider and a broad perspective. They must also have highly
trained nurses and social workers to facilitate, negotiate, and coordinate services
for them.
6) We recommend that health care providers and Federal. State, and local
policy makers enlist the local minority leaders and community organizations in
the development and implementation of programs for HIV-infected children. Such
cooperation is necessary as we develop a national strategy.
7) In those sections of the nation with either little or no pediatric AIDS now,
community, government, and professional leaders in health, public health, and
human services should begin immediately to plan for the care of the HIV-infected
children who will inevitably appear in the near future.
Certain metropolitan centers have increasingly large numbers of antibody-
positive infants, many of whom do not have homes to which they can be sent.
Hence these recommendations have an urgency ignored only at our peril. Over
the last six years, all of us have been forced to deal with problems perhaps better
appreciated by health professionals of 50 years ago, but unknown to us since the
advent of antibiotics. There is much we do not understand about this disease,
but we do have enough knowledge to treat these children and their families so
that the quality of their lives is improved. Since many children afflicted with AIDS
are poor, it is our responsibility to ensure that they receive the medical and social
care they need to live humane and civilized lives. It is our moral obligation to do so.
WORK GROUP IX: FINANCIAL ISSUES IN THE CARE OF
CHILDREN WITH HIV INFECTION
DEFINITION OF THE ISSUES:
The AIDS epidemic will impose incredible economic burdens at the inter-
national, national, State, local, and family levels. In many areas, hospitals, blood
banks, and local governmental and social service agencies already are being
strained financially. Methods have to be found for accumulating data, raising suffi-
cient funds, and developing channels for support for all aspects of prevention
66

and treatment ot pedratrrc AIDS. we must rake uno accuun~ ULC ~n~r-iug I1ulll-l
of cases, the need for increased prevention programs, and inflation. The peculiarly
pediatric issue of abandoned HIV-infected babies must be considered. Sugges-
tions for protocols and legislation for cohesive programs must be outlined to allow
governmental and quasi-governmental agencies, foundations and other non-profit
organizations, third-party payers, hospitals, corporations, families, and individuals
to promote cooperative economic strategies.
RESPONSE OF THE WORK GROUP:
While the increased funding for research and education in response to the
AIDS epidemic is to be applauded and encouraged, we need to pay more atten-
tion to financing the delivery of treatment and related social services for those
already infected and those who may become ill.
RECOMMENDATIONS:
  1) Because reliable data are scarce, we can make only rough estimates of
the health care costs of pediatric HIV infection. Given the limitations of the current
surveillance definition of AIDS and the underreporting, a projection of 10,000
pediatric cases with symptomatic HIV infection by 1991 seems probable. A number
of studies has found hospital utilization of 30 to 40 days per year per child. For
those children who cannot be discharged because of extraordinary placement and
care problems, the figures are much higher. We estimate that by 1991 between
800 and 1,000 hospital beds, representing 2% of the nation's pediatric beds, may
be needed. The impact will be much greater in the high-prevalence areas for pedi-
atric AIDS, such as Newark, New York City, and Miami. Obviously, there are
also other costs, including drugs, home care, ambulatory services, and foster care.
The care must be multidisciplinary and must involve thorough coordination across
a wide range of services and settings.
2) Our financing strategies must be designed to support and encourage alter-
natives to hospital care whenever possible. We cite two examples:
New Jersey is the first State to develop a "Home and Community Based
Services Model Waiver for Persons with AIDS/ARC" under the Medicaid
program. Under this waiver, New Jersey has elected to provide services such
as foster care, case management in a community-based setting, private duty
nursing, medical day care, personal care assistance supervised by a registered
nurse, and drug abuse treatment. This brings Federal matching dollars into the
State for multidisciplinary services not normally covered under Medicaid.
In New York State, designated AIDS Care Centers receive an increased reim-
bursement rate for enhanced care to AIDS patients. The goals of the program
are to improve the patients' quality of life and to reduce in-patient care through
maximum utilization of ambulatory services. Some of these facilities include
specific pediatric AIDS services providing family support and linkages with
community programs. The program has an evaluation and financial data collec-
tion component.
3) AIDS often strikes those with the least ability to pay and may affect entire
families. Many of the required services are not covered by either public programs
or private insurance. Approved drugs, like AZT, may cost $10,000 per patient
per year and often are not covered by private or public programs. Some changes
67

in our current method of financing health care clearly are needed. The recom-
mendations of our group are based on the idea that all segments of the health
care financing system should share the cost of HIV-related illness.
4) We support legislation which would waive the 24-month disability waiting
period for Medicare eligibility for patients with AIDS who often do not live long
enough to qualify.
  5) For most of the children with HIV infection, the primary health coverage
is through Medicaid. We recommend that the Federal government add critically
needed services to the minimum benefits which States are required to provide.
Specifically, approved drugs, foster care, and home nursing care should be
required of all States under Medicaid, with matching Federal funds. The Medi-
caid waiver program should be expanded to all States, along the lines of the New
Jersey pilot program. The private sector should be encouraged to join these waiver
programs by contributing funds for the development of case management and
out-patient services and by developing innovative coverage strategies.
6) A large number of families of the working poor and the uninsured will
fall outside the scope of these coverages. The income eligibility requirements
for Medicaid should be altered to allow these families to be covered. As the number
of pediatric HIV infections increases, the private sector will have to become more
involved, and the Federal government must assume a greater share of the cost
of care.
7) A national commission on AIDS, as proposed in pending Congressional
legislation, could consider strategies for development of catastrophic health care
coverage and would allow for improved accumulation of data better to project
future expenses.
WORK GROUP X: EDUCATION AND BEHAVIOR
MODIFICATION TO PREVENT HIV INFECTION
DEFINITION OF THE ISSUES:
The issues of how and when to teach children about sex and drug abuse have
been with us for decades. We must now add a third issue of when and how to
teach about HIV infection and its relationship to sex and drugs. The spread of
the AIDS epidemic adds a sense of urgency and fresh controversy to these
concerns. The questions are what, when, where, and how to teach children of
different age, social, and ethnic backgrounds an understanding of high-risk sexual
behavior, the avoidance of drugs, and the prevention of HIV infection.
RECOMMENDATIONS:
The main goal of an AIDS prevention program is to prevent, modify, or elim-
inate behaviors which may place our children and youth at risk for acquisition
of HIV infection. Our recommendations are as follows:
68

1) A nation-wide, multi-dimensional AIDS Prevention Campaign must be
developed and implemented, with adolescents and youth as the targeted group.
Specifically, it should include:
  a) a social marketing campaign to promote the acceptance and use of condoms
as a method of disease prevention. This campaign shall include promotional adver-
tising aimed at all socioeconomic and ethnic groups, as well as steps to increase
the availability of condoms to all economic sectors, including free distribution
and/or price subsidies;
b) a direct mailing to every household in the nation with a straightforward
AIDS prevention message; and
c) the convening of a meeting of innovators in business, advertising, enter-
tainment , and publishing to develop agreement with national leaders to promote
AIDS prevention messages through a wide variety of outlets. These include active
advertiser support of programs that provide information about risk exposure and
transmission from the standpoints of both sexual practices and drug abuse. Sexual
abstinence should be portrayed as the preferred method of AIDS prevention. Sexu-
ally active people should be presented as caring and responsible adults in their
use of condoms to prevent AIDS.
2) A separate office of the Chief of AIDS Operations should be established
under the Secretary of Health and headed by an official of national stature with
staff and funds commensurate to the importance of AIDS.
3) To be effective, education and prevention strategies must be modified to
conform to cultural patterns and beliefs. Information from existing studies on
cultural behavior, beliefs, and practices should be examined and incorporated
into AIDS prevention strategy. Members of identified cultural communities should
be involved in all phases of program planning and implementation.
4) Community-based programs, directed to adults who influence youth and
to youths themselves, lend themselves to the development of creative approaches
for education. Mechanisms should include educating legislators and other policy-
makers and utilizing resources directed to reach youth- including peer groups,
hotlines, and newsletters- with the coordination and consultation of the youths
themselves. Knowledgeable professionals should be trained and their services made
available through national organizations.
5) Clergy and denominational leaders should accept responsibility for creating
and disseminating material that describes the disease of AIDS, leads to its under-
standing and control, and provides acceptance and comfort to infected individuals.
6) The Surgeon General should facilitate development of a model HIV infec-
tion prevention curriculum with age-appropriate components for prekindergarten
through college-age students and include teacher-training materials. Schools should
place immediate emphasis on education from the junior high through college level,
and resources should be developed for counseling students at highest risk.
Community-based programs should be integrated with the school educational mate-
rial. Longer-term school plans should add AIDS prevention education to all school
health programs, including health services, clinics, health education classes, and
counseling.
7) All AIDS prevention education, whether in-school or out-of-school, should
contain two components: a) information and b) skill development. Skills should
include communication and coping skills, assertiveness training, self-esteem
development, and decision making. We hope the program would help youths to
develop a sufficient sense of themselves to postpone intercourse, refuse drug use,
69

avert sexual abuse, and effectively insist on the use of condoms when becoming
sexually active.
8) We recommend Federal, State, and community sponsored programs
specifically directed to youth at high risk for HIV exposure: gay and bisexual
teenagers, pregnant young women, juvenile male and female prostitutes, runaways.
incarcerated youth, and homeless or socially disenfranchised young people.
Immediate attention should be directed to the geographic areas of highest HIV
prevalence.
9) The current drug avoidance campaign must be expanded to teach
intravenous drug users avoidance of AIDS risk. Outreach programs must stress
how to avoid drug use and how to gain access to drug treatment programs.
Individuals who can't or won't refrain must be taught to avoid sharing needles,
how to obtain and use clean needles, and at a minimum how to clean quickly
and effectively previously used needles with bleach or alcohol. The communica-
tion must be simple, visual, multilingual, and culturally directed.
  10) Often, counseling on a repetitive basis is needed to encourage and help
maintain behavioral changes. Effective school-community programs must contain
the capability for individual and group counseling by experienced professionals.
11) All components of the HIV prevention campaign should include testing
and evaluation of implementation, process, and outcome by scientifically designed
studies using valid measurement tools.
70

RESPONSE OF
THE SURGEON GENERAL
As Surgeon General, I have neither the power nor the money to implement
all of the recommendations of the work groups. I am a catalyst, and my power
is that of moral persuasion.
Perhaps the most moving moment of this Workshop came when Mrs. Kushnick
said that she was told the death of her son would not count as AIDS. We hope
that Mrs. Kushnick and her family recognize how much their courage and their
work has made Samuel's life and struggle count very much indeed. We feel that
our work here should be dedicated to all the infants and children who-like
Samuel- were struck down by pediatric AIDS before we ever recognized the
disease. Our work here can begin to help all of the parents and all of the Samuels
in the world.
Now I want to respond to the various recommendations of the work groups.
Questions about the CDC definition of AIDS are recurrent and are intermingled
with questions about and seeming inconsistencies in the numbers of cases of AIDS
and the various subcategories created by factors such as age, sex, ethnic group,
and presumptive mode of acquisition. The basic confusion comes from the differ-
ence between the clinical diagnosis of AIDS (which is made by a physician and
is based on clinical acumen and laboratory tests) and the epidemiologic surveil-
lance methods developed and used by CDC. It is absolutely vital to develop
accurate methods for both. The ability to diagnose improves with the increase
in both our knowledge and our diagnostic tools. To be useful for revealing trends
in transmission and incidence as well as for predictions about the future, the CDC
definition of AIDS requires consistency. The criteria for inclusion in CDC
reporting have changed in the past and will change again as our information
becomes more complete. In any case, we should all be careful to make a distinc-
tion between clinical diagnosis and epidemiologic reporting.
I acknowledge the recommendations about the CDC guidelines and also those
of the American Academy of Pediatrics, and I thank the work groups for doing
such a thorough, critical job. I will see that the leadership of both CDC and AAP
are promptly made aware of your recommendations.
Certainly, the recommendations of the group working on the natural history
of AIDS in children emphasize the importance of comparable longitudinal studies
of the disease and its various forms of progression. We expect that the new clin-
ical classification of AIDS published in the Morbidity und Mortality Weekly Report
(MMWR) will be useful in these efforts and also in the development of multicenter
studies of various therapeutic interventions.
The concrete suggestions for research efforts on both the course of the disease
and on the treatment protocols of various agents such as ribavirin and AZT will
be taken under consideration. In reference to longitudinal studies and informa-
tion gathering, I can report that Dr. Virginia Anderson, a Public Health Service
officer and a participant in this Workshop, has already been detailed by the Service
to the Armed Forces Institute of Pathology where she is responsible for a pedi-
atric AIDS registry. I wilI see that she receives the mailing list of this Workshop
in order that she may inform the participants about the registry and how it works.
71

We are grateful that you have emphasized our ignorance about AIDS in adoles-
cents. The CDC definition of pediatric AIDS ends at age 13; perhaps we have
not given sufficient attention to this vulnerable group. We know that 139 teenage
cases have been reported. In the Surgeon General5 Report of October 1986, I
did say that adolescents may not know if they are homosexual or will be drug
abusers and therefore might not heed or understand messages others might find
pertinent. These youngsters must be reached and taught about risk behaviors that
expose them to infection with the AIDS virus. We need to know how this virus
affects youth during this second period of rapid growth.
We also take note of the specific legal and ethical concerns of drug trials in
infants, children, and youth; we are pleased that you have delineated these concerns
for us.
Special note is made that many of the children may actually be under the
guardianship of a local child welfare agency. We need to help these agencies under-
stand more about pediatric AIDS. This understanding is necessary for the provi-
sion of the extra supports these children need and for the awareness of risks and
benefits of various treatment protocols. The New Jersey program demonstrates
that such a program can be successful.
We should recognize that AIDS can be a possible consequence of child abuse,
as some centers dedicated to this problem are already aware. Later this week
I will be having the second meeting of a group called "The Health Law Initia-
tive." This is a joint project of the Attorney General and the Surgeon General.
We are writing national guidelines which will outline the principles of care for
victims of child abuse and their families. The guidelines will also include legal
principles relevant to collecting evidence. I will see that the Workshop recom-
mendations are included in those guidelines.
We agree that pilot studies should begin in order to learn the most efficacious
methods of newborn detection, including examination of cord blood, careful assess-
ment and follow-up of the newborn, and laboratory distinction between maternal
and infant antibodies.
We also agree that the implications of breastmilk transmission are likely to be
more critical in developing countries. One cautions that information about AIDS
should not cause reduction of breastfeeding when we are attempting to encourage
breastfeeding in general. I will bear your strictures in mind, especially when I
represent you as delegate to the World Health Organization in the first two weeks
of May. I expect this topic will be a part of the heated debate at that time, in
view of the past history of that organization over breastmilk substitutes.
Work groups III and V also presented some specific epidemiologic directions
for studies by both CDC and National Institutes of Health (NIH). The National
Institute for Drug Abuse can be especially useful in providing the knowledge of
the connections between the drug-using population and those who work with them.
NIDA knows the networks of drug-treatment programs. This howledge can shed
light on the problem of how transmission occurs, how pregnancy affects the woman
with HIV infection, and what is the frequency of infected offspring. We
acknowledge, however, that studies about drug usage should not be confined to
the methadone clinic population-likely to be a biased sample. Of highest priority
also is to inform both public and professionals about the outreach programs for
drug users in New York, New Jersey, and other States. These programs are
successful in improving knowledge and modifying behavior of drug users. Such
programs create an immediate need for adequate treatment and prevention
programs for addicts, and we must increase the number of slots available.
72

We believe that women at risk should receive care at a well qualified center
before they become pregnant, and an infected woman-and later, her infant-
should have the benefit of care by those most experienced. This care should be
provided in a regionalized system most suited to the need of each community.
The Health Resources and Services Administration (HRSA) has begun to assist
four cities in their plans for care for all with HIV infection, and more such projects
will be funded this year. These plans include the care of women and children.
You advised us that plans must include care in and out of hospital, including
counseling and education, psychological support services, foster care, day care,
and child development. The suggestion that nurturing homes for small numbers
of children be established has struck a responsive chord and is accepted. I will
seek to bring together the Division of Maternal and Child Health, the Office of
Human Development Services, and the Health Care Financing Administration
(HCFA) to pursue this innovative idea.
We have all seen examples of children and youth, as well as siblings and other
family members, barred from essential services because of the stigma of AIDS.
We have brought participants to this Workshop who could tell us how to be
successful in overcoming these barriers and in providing needed services and
access for these families. Your recommendations are rich with suggestions we
will try to implement. Some of these accommodations are for the public sector,
some for the private sector, some for a partnership between the two. I will bring
these sectors together to review your recommendations.
For those of you from the various communication media who have developed
your Work Group's statements, I hope you note the enormous restraint I have
imposed upon myself in answering you. I accept your statements at face value,
and I am delighted that you emphasized the need for both clarification and precise,
explicit words. During this Workshop, we have heard how many different
meanings there are for the same words or phrase. I have long been aware of the
problem of semantics in reference to AIDS, and if I have offended anyone, I
apologize. Throughout my involvement with AIDS, I have chosen my words about
this topic carefully. In spite of the headlines, I have never used the words "safe
sex" or "safer sex" and I never used the words "school-based clinic." These buzz
words mean very different things to different people. Sometimes I deliberately
use words that may seem offensive to some because I am trying to attract the
attention of others. For example, when I use the words "innocent victim," it is
not to indicate that others are not innocent. It is meant to attract attention, espe-
cially of those in our society who would consign all persons with AIDS to outer
darkness. I use the term "high risk" because at-risk groups asked me to use it.
I see no reason why we cannot bring together the kinds of people you suggest
to write a glossary of terms, not only for the medical profession, but also for
the media. We must first achieve consensus before we achieve uniformity, and
I will try to catalyse this process.
A project for reaching minority leaders is already underway, and I hope we
can announce its effect before very long.
7he Surgeon General's Report of October 1986 has already been translated into
Spanish and will appear soon. Camera-ready copies will be available for those
who wish to reprint the report in Hispanic newspapers or magazines. The Report
of this Surgeon General's Workshop will also be printed in Spanish.
We agree that AIDS information should be disseminated by family planning
clinics. We already have AIDS Information Programs in all of the ten regions
73

of the Public Health Service through family planning activities in clinics supported
directly or indirectly by PHS funds. We will expand these efforts to the best of
our ability.
Catastrophic insurance is something that has always been near to my heart,
since I dealt with the tremendously overburdening problems of surgical difficul-
ties in the newborn for over thirty-five years in this very Children's Hospital.
Several decades ago, I thought catastrophic insurance was needed for youngsters.
As a matter of fact, the very first talk I ever gave in Washington in reference
to my present career was on catastrophic insurance for pediatric patients.
With reference to church groups, I have had a cordial reception from all the
Protestant groups I have been working with since the first of the year. I have
been particularly pleased with the reaction of the National Association of Reli-
gious Broadcasters, I spoke to 3,000 of them in Washington last February, and
although I chastised them, their response was warm. The most important thing
is that many of them who reach a large segment of the radio and television audience
are transmitting a message to their constituencies concerning sexuality and
concerning the problem of AIDS. One Roman Catholic experiment in Dallas is
outstanding. The diocese assembled a curriculum for their junior high and middle
school. As I understand it, they gave the courses after school and invited students
from the public schools as well. My further information is that the classes were
well attended.
The recommendations given by the work group on education are worthy, but
difficult to carry out as presented. In the Federal government, we are constantly
reminded that we are not in the retail business of education. We do have some
model curricula, however. One of those is already a pilot study in Indiana. Other
programs from CDC will serve as models to be copied in the days ahead.
Since this past January, I have tried to draw attention to the need for discus-
sion among Federal, State, and municipal health officials and political figures
and the private sector to do three things: 1) to assess the cost of AIDS on an
annual basis in the future and to consider how the money will be raised, what
it will be used for, and who will make that decision; 2) to consider the role of
insurance in the cost factors of AIDS; and 3) to plan for alternative types of care
for the terminally ill AIDS patient. With the importance of this pediatric work-
shop, I will stop calling for such actions and will try to effect them as soon as
possible.
In the Surgeon General's Repon of October 1986, I called upon communities
to set up task forces to anticipate every phase of community life and of the social
fabric impacted by the AIDS epidemic. Many sections of the nation have not yet
encountered the problem of pediatric AIDS. In these States, governmental and
professional leaders in medicine, public health, education, and human services
must begin immediately to plan for what they are going to do when their cities
do have a number of HIV-infected children. I will facilitate this process by
providing appropriate consultation through our well established network of State,
Territorial and municipal health offices as soon as possible.
Recommendations from this Workshop will be printed in a report within three
months. We will ask each of you to inform the Office of the Surgeon General
during the next two years about progress on today's recommendations. We have
followed this protocol with other workshops, and it has been very successful.
We will share subsequent information with all of you so that you will know how
your colleagues have fared. You can profit from their successes (or mistakes).
We anticipate a follow-up report at the end of two years. The Workshop Report
74

and all future material will go to every group with potential to respond to your
recommendations.
I would like to tell all of you how much I appreciate your presence here. I
am sure it is not my gratitude that you seek, but rather-through today's efforts -
the gratitude of children yet unborn.
75

APPENDIX A
WORK GROUP
PARTICIPANTS
Elaine Abrams. M.D.
Harlem Hospital Center
Department of Pediatrics
506 Lenox Avenue
New York, NY 10037
Rabbi Richard F. Address
Regional Director
Union of American Hebrew
  Congregations
I17 South 17th Street. Room 2 I1 I
Philadelphia, PA 19103
Manuel M. Album. D.D.S.
American Society of Dentistry for
  Children
211 East Chicago Avenue
Chicago, IL 6061 I
Fern Allen. R.N.
Cedars-Sinai Medical Center
Department of Pediatrics
8700 Beverly Boulevard
Los Angeles. CA 90048
James R. Allen, M.D.
Assistant Director
AIDS Program
Centers for Disease Control
Building 6. Room 288
Atlanta, GA 30333
Arthur J. Ammann, M.D.
Director, Collaborative Medical
  Research
Genentech. Inc.
460 Pt. San Bruno Boulevard
South San Francisco, CA 94080
Janet Anderson, Ed.D.
Staff Psychologist
Hematology Division
The Children's Hospital of Philadelphia
Philadelphia Child Guidance Clinic
34th St&et and Civic Center Boulevard
Philadelphia, PA 19104
Virginia Anderson, M.D
Department of Pathology
Armed Forces Institute-.
Washington, DC 20906
Philip Banister. M.B., M.P.H..
  F.R.C.P. (C)
Health and Welfare Canada
Health Service and Promotion Branch
Ottawa, Ontario KIA lB4
Canada
Stephen D. Barbour. M.D.. Ph.D.
Division of Infectious Diseases
The Children's Hospital of Philadelphia
Philadelphia, PA 19104
Reverend Carl Bean
Chairman
National Minority AIDS Council
5882 W. Pica Boulevard. #210
Los Angeles, CA 90019
Myron Belfer. M.D.
Chairman. Department of Psychiatry
Harvard Medical School at The
  Cambridge Hospital
1493 Cambridge Street
Cambridge. MA 02139
Jeffrey L. Black. M.D.
Chairman. Task Force on AIDS
American School Health Association
University of California at San Diego
225 Dickenson Street
San Diego, CA 92103
Mary G. Boland, M.S.N.. C.P.N.P.
Director, AIDS Program
Children's Hospital of New Jersey
15 South 9th Street
Newark, NJ 07107
Shirley Bonnem
Vice President
Public Relations and Development
The Children's Hospital of Philadelphia
Philadelphia, PA 19104
76

G. Stephen Bowen, M.D.
Medical Epidemiologist
Acute Infectious Disease Epidemiology Div.
Department of Health
Box 90
Harrisburg, PA 17108
William Borkowsky, M.D.
Bellevue Hospital Center/New York
Universiiy Medical Center
Pediatric Department
First Avenue at East 27th Street
New York. NY 10016
Elaine Brainerd. R.N., M.A.
Consultant. School Health Services
State Department of Education
P.O. Box 2219
Hartford. CT 06145
Larry K. Brown. M.D.
Rhode Island Hospital
593 Eddy Street
Providence. RI02903
Philip Brunell, M.D.
Department of Pediatrics
Health Science Center
University of Texas
San Antonio, TX 78228
Georgia Buggs. R.N.. M.P.H.
Division of Maternal and Child Health
Department of Health and Human Services
Rockville, MD 20857
Toni Cabat. M.S.W.
Project Coordinator. AIDS Component
Albert Einstein College of Medicine
1300 Morris Park Avenue
Forchheimer Building, #401
Bronx. NY 10461
James Chin, M.D.. M.P.H.
Special Programme on AIDS
World Health Organization
121 I Geneva 27, Switzerland
Marlene Cimons
Los Angeles Times- Washington Bureau
1875 Eye Street NW. Suite 1100
Washington, DC 20006
Matt Clark
Newsweek
444 Madison Ave.
New York, NY 10022
Karen A. Clifford, J.D.
Assistant Counsel
Health Insurance Association of America
1025 Connecticut Ave.. NW
Washington. DC 20036
Reverend Lynne Coggi
AIDS Consultant National Mission
National Episcopal Church
815 Second Avenue
New York, NY 10017
Alan R. Cohen. M.D
Senior Physician
Division of Hematology
The Children's Hospital of Philadelphia
Philadelphia, PA 19104
Edward M. Connor. M.D.
Associate Director
Div. of Immunology and Infectious Disease
Children's Hospital of New Jersey
15 South Ninth Street
Newark. NJ 07107
Jolene Connor. R.N.
Associate Director, AIDS Program
Harlem Hospital
506 Lennox Avenue, Room 2146
New York. NY 10037
Louis Z. Cooper, M.D.
Director and Professor of Pediatrics
St. Luke`s-Roosevelt Hospital Center
Amsterdam Avenue and 114th Street
New York. NY 10019
Catherine Cowell, Ph.D.
Director, Bureau of Nutrition
City of New York, Department of Health
93 Worth Street, Room 714
New York, NY 10013
Mollie Coye
State Commissioner of Health
New Jersey State Department of Health
Trenton. NJ 08625-0360
Leonard Davis
Vice President
Blue Cross of Greater Philadelphia
1333 Chestnut Street
Philadelphia, PA 19106
77

William DeJong, Ph.D.
Senior Research Associate
Education Development Center. Inc.
55 Chapel Street
Newton. MA 02160
Jane K. DeMaio
Division of General Academic Education
New Jersey State Department of Education
225 W. State Street
Trenton, NJ 08625
Harold G. Devine, Jr.. M.M., C.A.G.S.
Assistant Superintendent of Schools
Swansea Public Schools
One Gardners Neck Road
Swansea. MA 02777
Eunice Diaz, M.S., M.P.H.
Director, Health Promotion and Community
  Affairs
White Memorial Medical Center
1720 Brooklyn Ave.
Los Angeles, CA 90033
Steven Douglas, M.D.
Director, Div. of Immunology and Allergy
The Children's Hospital of Philadelphia
Philadelphia, PA 19104
Walter R. Dowdle, Ph.D.
Acting Deputy Director (AIDS)
Centers for Disease Control
1600 Clifton Road, N.E.
Building 1, Room 2122
Atlanta. GA 30333
Lisa Egbuonu, M.D., M.P.H.
University of Pennsylvania
2-L Nursing Education Building
Mail Code 6094
Philadelphia, PA 19104
Leon G. Epstein, M.D.
Assistant Professor of Neurosciences and
Pediatrics
University of Medicine and Dentistrv of
New Jersey
185 South Orange Avenue
Newark, NJ 07 103-2757
Patricia Evans, R.N.
Visiting Home Nurse
1326 Burnett Avenue
Union, NJ 07083
Judith Feinberg. M.D.
Treatment Branch/AIDS Program
National Institute of Allergy and infectious
   Diseases
National Institutes of Health
Bethesda. MD 20892
Senih Fikrig. M.D.
Professor of Immunology
Downstate Medical Center
450 Clarkson Avenue
Brooklyn, NY 11203
Loretta P. Finnegan. M.D.
Director of Family Center
Jefferson Medical College
111 South I Ith Street. Suite 6105
Philadelphia, PA 19107
Gerald W. Fischer. M.D.
Professor of Pediatrics
Uniformed Services University of the Health
  Sciences
4301 Jones Bridge Road
Bethesda, MD 20814-4799
Mary Flannery
The Philadelphia Daily NPMS
400 North Broad Street
Philadelphia, PA 19101
Mary Fugate. R.N.
American Red Cross
Health Education
150 Amsterdam Avenue
New York. NY 10023
Anna Garcia, M.S.W.
Department of Pediatrics
University of Miami School of Medicine
Jackson Memorial Hospital
Miami. FL 33124
Keith Geiger
Vice President
National Education Association
1201 16th Street, N.W.
Washington, DC 20036
Sander G. Genser, M.D., M.P.H.
National Institute of Drug Abuse
Clinical Medicine Branch
Rockville, MD 20857
78

Harold Ginzburg, M.D., I.D., M.P.H.
Chief, Epidemiology Branch
National Institute of Allergy and Infectious
  Diseases/AIDS Program
National InstiNtes of Health
Bethesda. MD 20892
Lenny Giteck
Editor, 7&e Advocate
6922 Hollywood Boulevard, 10th Floor
Los Angeles, CA 90028
Karen Glanz, Ph.D., M.P.H.
Associate Professor
Department of Health Education
Temple University (062-56)
Philadelphia, PA 19122
Robert Gleeson, M.D.
Northwestern Mutual Life
720 E. Wisconsin Avenue
Milwaukee, WI 53202
D. Jay Gloeb, M.D.
Department of Obstetrics
University of Miami School of Medicine
3120 Indiana Street
Miami. FL 33133
Jackie Goldberg
Board of Education
Los Angeles Unified School District
P.O. Box 3307
Los Angeles, CA 90051
Max Gomez. Ph.D.
Health and Science Editor
KYW-TV
independence Mall East
Philadelphia. PA 19106
Edward D. Gompetts. M.D.
Director. Hemophilia Center
Children's Hospital of Los Angeles
4650 Sunset Boulevard
Los Angeles. CA 90027
Jesse Green, Ph.D.
Director of Research
New York University Medical Center
New York. NY 10016
Phyllis Gurdin
Leake and Watts Children's Home
463 Hawthorne Avenue
Yonkers. NY 10705
Melvyn R. Haas. M.D.
National Institute of Mental Health
Parklawn Building, 7CI0
Rockville. MD 20857
Mary Ellen Haines
United Church Board for Homeland
  Ministries
132 West 31st Street
New York, NY 10001
Lorranie Hale, Ph.D.
Hale House Center
68 Edgecomb Avenue
New York, NY 10030
Neal Halsey, M.D.
Director. Division of Disease Control
School of Hygiene and Public Health
Johns Hopkins University
600 N. Wolfe St.
Baltimore. MD 21205
H. Allan Handford, M.D.
Hemophilia Center of Central Pennsylvania
Director, Division of Child Psychiatry
Penn State University
College of Medicine
Hershey, PA 17033
James C. Harris, M.D.
Associate Professor
Division of Child Psychiatry
Johns Hopkins University School of Medicine
Baltimore. MD 21205
Machelle Harris. M.D.
New York City Department of Health
Bureau of Maternity Services and Family
  Planning
280 Broadway, Room 303
New York, NY loo07
Maurice Hattmen
Acting Regional Administrator
Health Care Financing Administration
Box 7760
Philadelphia. PA 19101
Rashida Lorraine Hassan
Blacks Educating Blacks About Sexual Health
Issues
1319 Locust Street, Third Floor
Philadelphia. PA 19107
Harry Haverkos, M.D.
National Institute of Drug Abuse
Clinical Medicine Branch
Division of Clinical Research
Rockville. MD 20857
Herbert Hazen
Director
School Health Services
School District of Philadelphia
Philadelphia. PA 19103
79

Margaret C. Heagarty. M
Director of Pediatrics
Harlem Ho&al Center
New York, `NY 10032
.D.
James Hegarty, M.D.
Columbia University School of Public Health
Sergievsky Center-Epidemiology
100 Haven
New York. NY 10032
Karen Hein, M.D.
Albert Einstein College of
  MedicinelMontefiore Hospital
Director, AIDS in Adolescence Program
Bronx. NY 10461
Jay H. Herman. M.D.
Penn-Jersey Regional Blood Services
American Red Cross
23rd and Chestnut Streets
Philadelphia, PA 19103
Margaret W. Hilgartner, M.D.
Director, Division of Pediatric
  Hematology/Oncology
New York Hospital-Cornell Medical Center
525 E. 68th Street
New York, NY 10021
Susan Holman. R.N., M.S.
SUNY Downstate Medical Center
450 Clarkson Avenue
Brooklyn, NY 11203
John J. Hutchings. M.D.
Division of Maternal and Child Health
Department of Health and Human Services
Rockville, MD 20857
Vince L. Hutchins, M.D.
Division of Maternal and Child Health
Department of Health and Human Services
Rockville. MD 20857
Cecilia Hutto, M.D.
Assistant Professor of Pediatrics
Division of Infectious Diseases
University of Miami
P.O. Box 016960
Miami. FL 33101
Earthamae Isaac
Legislative Assistant to Senator Arlen Spector
Senate Office Building, Room 303
Washington, DC 20510
Joyce Jackson, M.A.
Coordinator, AIDS Community Support Unit
New Jersey State Department of Health
Division of Narcotic and Drug Abuse
20 Evergreen Place
East Orange, NJ 07018
Rudolph E. Jackson, M.D.
Professor and Acting Chairman
Department of Pediatrics
Morehouse School of Medicine
720 Westview Drive, SW
Atlanta. GA 30310
Annette Johnson, M.S., R.D.
Education Coordinator
AIDS Institute-NY State Dept. of Health
10 East 40th Street
New York. NY 10016
Stephen Joseph, M.D.
Commissioner of Health
City of New York
New York, NY 10013
Vijay Joshi. M.D.
Department of Pathology
Children's Hospital of New Jersey
15 South 9th Street
Newark, NJ 07107
LaVohn E. Josten, Ph.D.. R.N.
Director of Nursing
Minnesota State Department of Health
Minneapolis, MN 55415
Emily Kahn
Philadelphia Department of Health AIDS
  Program
500 S. Broad Street
Philadelphia, PA 19146
Ram Kairam, M.D.
Assistant Professor of Clinical Pediatrics and
  Clinical Neurology
St. Luke'slRoosevelt Hospital Center
Amsterdam Avenue and 1 Ith Street
New York, NY 10025
Aditya Kaul, M.D.
Associate Professor
Department of Pediatrics
New York Medical College
234 East 149th Street
Bronx, NY 10451
Anne E. Keller, M.D.
Director, Division of Rehabilitation
Pennsylvania Department of Health
Box 90
Harrisburg, PA 17 108
80

Judith Keresztes, R.N.
Data Coordinator. AIDS Program
Children's Hospital of New Jersey
15 South Ninth Street
Newark, NJ 07 103-2757
Barbara P. Kern, M.A.
Director, Special Child Health Service
New Jersey State Department of Health
120 S. Stockton Street, CN 364
Trenton, NJ 08625
C. Everett Koop, M.D., S.C.
Surgeon General, Public Health Service
Department of Health and Human Services
Hubert H. Humphrey Building
200 Independence Avenue, S.E.
Washington, DC 20201
Keith Krasinski, M.D.
Bellevue Hospital Center/New York
  University Medical Center
Pediatric Department
First Avenue at East 27th Street
New York, NY 10016
Penelope G. Krener. M.D.
Department of Pediatrics and Psychiatry
University of California, Davis
2315 Stockton Boulevard
Sacramento. CA 95817
Helen G. Kushnick
General Management Corporation
9000 Sunset Blvd.. Suite 400
Los Angeles, CA 90069
George Lamb. M.D.
Boston City Hospital
Administration Building, 4th Floor
818 Harrison Avenue
Boston. MA 02 118
Normand LaPointe. M.D., F.R.C.P
Hopital Sainte-Justine
3175 Cote Sainte-Catherine
Montreal. Quebec H3T lC5
Canada
William D. Lassek. M.D.
Regional Health Administrator. Region III
Department of Health and Human Services
P.O. Box 13716
Philadelphia. PA 19101
Sandra Nusinoff Lehrman. M.D.
Department of Virology
Burroughs Wellcome Company
3030 Cornwallis Road
Research Triangle Park, N.C. 27709
Carol Levine
Co-Director, AIDS Project
The Hastings Center
255 Elm Road
Briarcliff Manor. NY 10510
Harold W. Lischner, M.D.
Chief, Section of Immunology and
Rheumatology
St. Christopher`s Hospital for Children
5th and Lehigh Streets
Philadelphia, PA 19133
Gwendolyn Long
Assistant Regional Administrator
Division of Youth and Family Services
1180 Raymond Boulevard, 18th Floor
Newark. NJ 07102
Sarah Long, M.D.
Chief. Section of Infectious Diseases
St. Christopher's Hospital for Children
5th and Lehigh Avenue
Philadelphia, PA 19133
Michael W. Lowenstein
Commercial Insight
696 Meadowbrook Lane
Moylan, PA 19063
Evelyn G. Lowery
Southern Christian Leadership Conference
P.O. Box 42257
Atlanta, GA 3031 I
Elaine Lugovoy, R.N.. M.A.
Associate Director of Nursing
Pediatric Home Health Care
Community Health Care of North Jersey. Inc.
451 Lincoln Avenue
Orange, NJ 07050
German V. Maisonet, Jr., M.D.
Medical Director
Minority AIDS Project
Coldwater Canyon Hospital
642 I Coldwater Canyon
North Hollywood, CA 91606
Robert W. Marion, M.D.
Assistant Professor of Pediatrics
Albert Einstein College of Medicine
Jacobi Hospital-Room 803
Pelham Parkway and Eastchester Road
Bronx. NY 10461
Mary Mastrucci, M.D.
University of Miami School of Medicine
Division of Immunology and Infectious
  Diseases
P.O. Box 016960
Miami. FL 33101
81

Robert M. May, F.R.S., Ph.D.
Department of Biology
Princeton University
Princeton, NJ 08544
Donald J. McConnell. M.A., M.Div.
Executive Director, CT Alcohol and Drug
  Abuse Commission
999 Asylum Avenue
Hartford, CT 06105
Kenneth McIntosh, M.D.
Children's Hospital
Chief of Clinical Infectious Diseases
300 Longwood Ave.
Boston, MA 02115
Loretta McLaughlin, C.P.A.
Vice-President - Finance
Delaware Valley Hospital Council
1315 Walnut Street
Philadelphia, PA 19107
Janet L. Mitchell, M.D.
Director of Ambulatory Perinatology
Assistant Professor Harvard Medical School
Beth Israel Hospital
330 Brookline Ave.
Boston, MA 022 15
Lawrence Miike, M.D., J.D.
Senior Associate
Office of Technology Assessment
U.S. Congress
Washington. DC 20510
Howard Minkoff, M.D.
Downstate Medical Center
Box 24
450 Clarkson Avenue
Brooklyn, NY 11203
Anthony Minnefor, M.D.
Chief of Infectious Disease Division
St. Joseph's Hospital and Medical Center
703 Main Street
Paterson, NJ 07523
John Modlin, M.D.
Associate Professor of Pediatrics
Johns Hopkins University School of Medicine
600 N. Wolfe Street
Baltimore, MD 21205
Paul A. Moore, M.S.W.
Assistant Director, AIDS Initiative
New York City Health and Hospital
  Corporation
346 Broadway, Room 531
New York, NY 10013
Rachael More&i. M.D.
Department of Pathology
The Albert Einstein College of Medicine
1300 Morris Park Avenue
Forchheimer Building #401
Bronx, NY 10461
Susan Morrison, M.D.
Pediatric Infectious Diseases
University of Medicine and Dentistry of New
Jersey
185 South Orange Avenue
Newark. NJ 07103-2757
Thomas M. Mundy. M.D.
Assistant Professor of Pediatrics
UCLA School of Medicine
Cedars-Sinai Medical Center
Box 48750
Los Angeles, CA 90048-0750
Solbritt Murphy. M.D.
Acting Director. Division of Family Health
Services
New York Department of Health
Albany, NY 12237
Andre Nahmias. M.D.
Department of Pediatrics
Emory University School of Medicine
69 Butler Street, SE
Atlanta, GA 30303
Linda Nelson, D.D.S.
American Academy of Pediatric Dentistry
211 E. Chicago Avenue, Suite 1036
Chicago. IL 60611
Stephen W. Nicholas. M.D.
Department of Pediatrics
The Children's Hospital of Philadelphia
Philadelphia, PA 19104
Brian Novick, M.D.
Division of Clinical Allergy and Immunology
Albert Einstein College of Medicine
1300 Morris Park Avenue
Bronx, NY 10461
Rita O'Donnell
Pediatric AIDS Surveillance Coordinator
New York City Department of Health
125 Worth Street
New York, NY 10013
Annette Gestreicher
Editor-in-Chief, Medical lVor[d News
7676 Woodway Street
Suite 112
Houston, TX 77063
82

James Oleske, M.D.
Department of Pediatrics
College of Medicine and Dentistry of New
  Jersey
100 Bergen Street
Medical Science Building, F532
Newark, NJ 07 103
Gerald Oppenheimer, Ph.D.
Associate Professor
Department of Health and Nutrition Sciences
Brooklyn College
Brooklyn. NY 11215
Michael T. Osterholm, Ph.D.. M.P.H
State Epidemiologist and Chief
Minnesota Department of Health
717 S.E. Delaware Street
Minneapolis. MN 55440
Margaret Oxtoby, M.D.
Centers for Disease Control
1600 Clifton Road
Atlanta, GA 30333
Savita Pahwa, M.D.
Chief, Pediatric Immunology Division
North Shore University Hospital
300 Community Drive
Manhasset. New York 11030
Carmen Paris
Health Education
Philadelphia Dept. of Health AIDS Program
500 S. Broad Street
Philadelphia. PA 19146
Wade P. Parks. M.D., Ph.D.
Director of Pediatrics
Division of Immunology & Infectious Disease
University of Miami School of Medicine
1550 N.W. 10th Avenue
Miami. FL 33136
Robert Parrott, M.D.
Director Emeritus
Children's Hospital National Medical Center
1 I I Michigan Avenue. NW
Washington DC 20010
Jude C. Payne
Research Analyst
National Leadership Commission on Health
  Care
815 Connecticut Ave., NW
Washington, DC 2OfJOl
Cal Pierce
Pediatric News
12230 Wilkins Ave.
Rockville, MD 20852
Stanley A. Plotkin. M.D.
Director, Division of Infectious Diseases
The Children's Hospital of Philadelphia
Philadelphia, PA I9104
B. Frank Polk, M.D.
Professor of Epidemiology
School of Hygiene and Public Health
Johns Hopkins University
615 N. Wolfe Street
Baltimore, MD 21205
Angelea Pot-tale, R.N.
Department of OB/GYN
Columbia Presbyterian Medical Center
622 W. 168th Street
New York, NY 10032
Anna Portigal
Parent
Suki Ports
Director, Minority Task Force on AIDS
Council of Churches of the City of New York
92 St. Nicholas Avenue, IB
New York City, NY 10026
Thomas C. Quinn, M.D.. M.S.
National Institute of Allergy and Infectious
  Diseases
Bethesda. MD 20892
Gerald V. Quinnan, Jr.. M.D.
Division of Virology
Food and Drug Administration
Bethesda, MD 20892
Gary Remafedi, M.D. M.P.H.
Assistant Professor of Pediatrics
Adolescent Health Program
University of Minnesota Hospital and Clinic
Box 721, UMHC
Minneapolis. MN 55455
Gloria Rodriguez, M.S.W.
Public Health Consultant
New Jersey State Department of Health
20 Evergreen Place. 4th Floor
East Orange, NJ 07018
Martha F. Rogers, M.D.
Medical Epidemiologist
AIDS Program
Centers of Disease Control
Atlanta, GA 30333
Nancy G. Rowett
Director of Public Relations
Rhode Island Hospital
593 Eddy Street
Providence, RI 02902
83

Arye Rubinstein, M.D.
Professor of Pediatrics. Microbiology and
Immunology
Albert Einstein College of Medicine
Bronx, NY 10461
George W. Rutherford. M.D.
Medical Director. AIDS Office
San Francisco Department of Public Health
1 I1 I Market Street
San Francisco. CA 94103
Marie Saint Cyr-Delpe, M.S.W
Haitian Coalition on AIDS
50 Court Street. Suite 605
Brooklyn, NY 11201
Madlene Sawyer, M.D.
Department of Obstetrics/Gynecology
University of Miami School of Medicine
Jackson Memorial Hospital - R 136
P.O. Box 016960
Miami, FL 33101
Helen Schietinger. M.A.. R.N.
Director, AIDS Education and Training
  Program
California Nurses Association
1855 Folsom Street, Suite 670
San Francisco. CA 94103
Neil Schram, M.D.
Kaiser-Permanente
25825 S. Vermont Avenue
Harbor City. CA 90710-3599
Richard H. Schwarz, M.D.
Professor and Chairman
Department of Obstetrics and Gynecology
Downstate Medical Center
Brooklyn, NY 11023
Harvey Schweitzer
Attorney
8 Columbia Avenue
Takoma Park, MD 20912
Gwendolyn B. Scott, M.D.
Associate Professor of Pediatrics
Div. of Infectious Disease & Immunology
University of Miami School of Medicine
Box 016960
Miami, FL 33101
John Scott, R.N.
Clinical Unit Coordinator
Pediatric AIDS Program
The Albert Einstein College of Medicine
1300 Morris Park Avenue
Forchheimer Building, #401
Bronx, NY 10461
Jeffrey Seibert, Ph.D.
Chair. Pediatric AIDS Task Force
American Psychological Association
Associate Professor. University of Miami
P.O. Box 016820
Miami. FL 33101
Peter Selwyn. M.D.
Medical Director
Drug Abuse Treatment Program
Montefiore Medical Center
1 I I East 2 10th Street
Bronx, NY 10467
John Sever. M.D.
Chief, Infectious Disease Branch. NINCDS
National Institutes of Health
Bldg 36. Room SD-06
Bethesda. MD 20892
Mary-Ann Shafer. M.D.
Associate Director
Division of Adolescent Medicine
University of California at San Francisco
San Francisco. CA 94143
Robert G. Sharrar. M.D., M.Sc.
Director, Health Promotion/Disease Control
Philadelphia Department of Public Health
500 South Broad Street
Philadelphia, PA 19146
Karolynn Siegel. Ph.D.
Director of Research
Department of Social Work
Memorial Sloan Kettering Cancer Center
New York, NY 10021
Benjamin K. Silverman, M.D.
Department of Emergency Medicine
The Children's Hospital of Philadelphia
34th Street and Civic Center Boulevard
Philadelphia. PA 19104
Peter Smith, M.D.
Rhode Island Hospital
593 Eddy Street
Providence, RI 02902
Shirley Smith, R.N., M.S.
MCH Nursing Consultant
Department of Health and Human Services
JFK Federal Building
Boston. MA 02902
George E. Sonsel, L.C.S.W.
AIDS Project, Los Angeles
3670 Wilshire Boulevard. Suite 300
Los Angeles, CA 90010

Stephen Spector, M.D.
Division of Infectious Diseases
University of California San Diego
Medical Center, H-814-H
225 Dickenson Street
San Diego, CA 92103
Sari Staver
Amen'can Medical News
535 North Dearborn Street
Chicago, IL 60610
E. Richard Stiehm, M.D.
University of California at Los Angeles
Health Sciences Center
Room 22-387
Los Angeles, CA 90024
Maria S. Suarez, M.D.
Assistant Clinical Professor
College of Physicians and Surgeons
Columbia University
Harlem Hospital/Pediatric Department
506 Lenox Avenue
New York. NY 10037
Mary Tasker, M.S.W.
Pediatric Social Worker
Children's Hospital of New Jersey
15 South Ninth Street
Newark. NJ 07107
Katy Taylor
Deputy Director-AIDS Discrimination Unit
New York City Commission on Human
Rights
52 Duane Street, 7th Floor
New York. NY loo07
Tom Tebbens
Vice President
Lewis, Gilman. Kynett. Inc.
1700 Market St.
Philadelphia. PA 19106
Pauline Thomas, M.D.
Director of AIDS Surveillance
New York City Department of Health
New York. NY 10013
James Troutman. M.D.
Institute of Medicine
2101 Constitution Ave.. NW
Washington, DC 20418
Diane W. Wara, M.D.
Professor of Pediatrics
University of California Medical Center
San Francisco. CA 94143
Dottie Ward-Wimmer, R.N., B.A.
Immunology Clinical Specialist
Children's Hospital National Medical Center
111 Michigan Avenue, NW
Washington, DC 20010
C.J. Wellington, M.D.
Regional Program Consultant, MCH
Room 306, Federal Office Building
50 United Nations Plaza
San Francisco. CA 94102
Catherine M. Wilfert, M.D.
Duke University Department of Pediatrics
Division of Infectious Diseases
Box 2951
Durham. NC 27710
English Willis, M.D.
General Pediatrics
The Children's Hospital of Philadelphia
Philadelphia. PA 19104
Anne Willoughby, M.D.. M.P.H.
Special Assistant for Pediatrics
National Institute of Child Health and Human
  Development
Landow 7C-05
Bethesda, MD 20892
Constance B. Wofsy, M.D.
Co-Director. AIDS Activities
995 Potrero Avenue, Ward 84
San Francisco General Hospital
San Francisco, CA 94110
Margaret Lynn Yonekura, M.D.
Chief, Obstetrics
Division of Maternal-Fetal Medicine
Harbor UCLA Medical Center
1000 W. Carson Street Box #3
Torrence, CA 90509
Stephen Young,
Coordinator, AIDS Health Services
Division of Narcotics and Drug Abuse
New Jersey State Department of
  HealthiCN 362
Trenton. NJ 08625
Joel Ziff
Arthur Andersen and Company
5 Penn Center
Philadelphia. PA 19103
85

APPENDIX B
GROUP LEADERS
James Chin, M.D., M.P.H.
World Health Organization
Louis Z. Cooper, M.D.
St. Luke's-Roosevelt Hospital
Center
Jesse Green, Ph.D.
New York University Medical
Center
Max Gomez, Ph.D.
KYW-TV3, Philadelphia
Margaret C. Heagarty, M.D.
Harlem Hospital Center
Stephen Joseph, M.D.
Commissioner of Health. NYC
Gloria Rodriguez, M.S.W.
NJ State Department of Health
Mary-Ann Shafer, M.D.
University of California at
San Francisco
Pauline Thomas, M.D.
Director of AIDS Surveillance,
NYCDH
Diane W. Wara, M.D.
University of California at
San Francisco
RECORDERS
Stephen Barbour, M.D.
Jonathan Bell, M.D.
Maryanne Bolton
Erna Goulding, M.A.*
Naynesh Kamani, M.D.
Anne E. Kazak. Ph.D.
Gary Marshall, M.D.
Anthony Mauro, M.S.W.
Stephen Nicholas, M.D.
Marianne C. Raphaely **
Recorders are staff members of
The Children's Hospital of
Philadelphia.
*Former Vice-President for
Patient Care
The Children's Hospital of
  Philadelphia
**Member, Executive Council
of Volunteer Organizations
The Children's Hospital of
  Philadelphia
Catherine M Wilfert, M.D.
Duke University
86

APPENDIX C
GUIDELINES FOR MANAGEMENT OF HIV INFECTION
"Revision of the Case Definition of Acquired Immunodeficiency Syndrome,"
Morbidity and Mortality Weekly Report (MMWR), Vol. 34: 373-375, June 28,
1985.
"Education and Foster Care of Children Infected with Human T-Lymphotropic
Virus Type IIULymphadenopathy-Associated Virus," MMWR, Vol. 34: 5 17-52 1,
August 30, 1985.
"Heterosexual Transmission of Human T-Lymphotropic Virus Type
IIULymphotropic-Associated Virus," MMWR, Vol. 34: 561-563, September 20,
1985.
"Recommendations for Preventing Transmission of Infection with Human
T-Lymphotropic Virus Type IIULymphadenopathy-Associated Virus in the Work-
place," MMWR, Vol. 34: 681-685, November 15, 1985.
"Recommendations for Assisting in the Prevention of Perinatal Transmis-
sion of Human T-Lymphotropic Virus Type IIULymphadenopathy-Associated
Virus and Acquired Immunodeficiency Syndrome," MMWR, Vol. 34: 721-732,
December 6, 1985.
"Recommendations for Preventing Transmission of Infection with Human
T-Lymphotropic Virus Type IIULymphadenopathy-Associated Virus During Inva-
sive Procedures, MMWR, Vol. 35: 221-223, April 11, 1986.
"Immunization of Children Infected with HTLV-IIULAV," MMWR, Vol.
35: 595-605, September 26, 1986.
"Classification System for Human Immunodeficiency Virus (HIV) Infection
in Children under 13 Years of Age," MMWR, Vol. 36: 225-236, April 24, 1987.
"Acquired Immune Deficiency Syndrome and HTLV-IIIILAV Infections,"
Report of the Committee on Infectious Diseases, American Academy of Pedi-
atrics, Part 3: 81-87, 1986.
"Prevention, Control, and Management of Infections in Day Care." in
"Diseases spread through urine, blood. saliva, and other bodily fluids," Health
in Day Care: A Manual for Health Professionals, American Academy of Pedi-
atrics, 69-71, 1987.
Confronting AIDS: Directions for Public Health, Health Care, and Research.
Institute of Medicine, National Academy of Sciences, 1986.
87

APPENDIX D
SELECTED READINGS
Ammann AJ: The acquired immunodeficiency syndrome in infants and children.
Ann Intern Med 1985; 103:734-7.
Ammann AJ, Cowan M, Wara DW, Weintraub P, et al. : Acquired immunodefi-
ciency in an infant: Possible transmission by means of blood products. Lancet
1983; 1:956-958.
Ammann AJ, Wara DW, Dritz S, et al.: AIDS in an infant: Possible transmis-
sion by means of blood products. Lancet 1983; 1:956.
Andiman WA, Martin K, Rubinstein A, et al.: Opportunistic lymphoprolifera-
tions associated with Epstein-Barr viral DNA in infants and children with AIDS.
Lancet 1985; 1: 1390-93.
Apparent transmission of HTLV-IIULAV from a child to a mother providing health
care. MMWR 1986; 35-75.
Barbour SD: Acquired immune deficiency syndrome of childhood. Pediatric
Clinics of North America 1987; 34:247-268.
Boland M, Gaskill TD: Managing AIDS in children. MCN 1984; 9:384.
Chaisson RE, Allain JP, Leuther M, et al.: Significant changes in HIV antigen
level in the serum of patients treated with azidothymidine. N Engl J Med 1987;
315:1610-11.
Connor E, Mendelson J, Keresztes J, et al.: Lack of HTLV-III transmission for
children with AIDS and AIDS Related Complex to household contacts. Inter-
science Congress of Antimicrobial Agents and Chemotherapy. September 1986,
New Orleans, LA.
Cowan MJ, Hellman D, Chudwin D, et al.: Maternal transmission of AIDS. Pedi-
atrics 1984; 73:382.
Epstein LG, Sharer LR, Joshi VV, et al.: Progressive encephalopathy in chil-
dren with Acquired Immune Deficiency Syndrome. Ann Neurol 1985; 17:488.
Hellman D, Cowan MJ, Ammann AJ, et al.: Chronic active Epstein-Barr virus
infections in two immunodeficient patients. J Pediat 1984; 103:584-588.
88

Johnson JP, Hammerberg 0, Walker IR, et al.: Early detection of HIV infection
in a newborn. N Engl J Med 1987; 316:272-3.
Joshi VV, Oleski JM, Minnefor AB, et al.: Pathology of suspected AIDS in chil-
dren: A study of eight cases. Pediatr Pathol 1984; 2:71.
Joshi VV, Connor EM, Oleski JM, et al.: Cardiovascular involvement in fatal
cases of pediatric AIDS. ICAAC. September 1986, New Orleans, LA.
Katz BZ, Andiman WA, Eastman R, et al.: Infection with two genotypes of
Epstein-Barr virus in an infant with AIDS and lymphoma of the central nervous
system. J Infect. Dis. 1986; 153:601-604.
Marion RW, Wiznia AA, Hutcheon RG, et al.: The AIDS embryopathy: a recog-
nizable pattern of craniofacial dysmorphism in children with AIDS. Am J Dis
Child, in press.
Oleski J, Connor E, Bobila R, et al.: The use of intravenous gamma globulin
in children with the acquired immunodeficiency syndrome. Presented, Society
for Pediatric Research, May 1986, Washington, DC.
Parks W and Scott G: An overview of pediatric AIDS: approaches to diagnosis
and outcome assessment. In AIDS: Modern concepts and therapeutic challenges.
Ed. S Broder. Marcel Dekker, Inc., NY 1987; 245-262.
Rogers MF: AIDS in children: a review of the clinical, epidemiological and public
health aspects. Ped Infec Dis 1985; 4:3.
Rubinstein A: Acquired immunodeficiency syndrome in infants. Am J Dis Child
1983; 137:825.
Rubinstein A, Morecki R, Silverman B, et al.: Pulmonary disease in children
with acquired immune deficiency and AIDS related complex. J Pediatr 1986;
108:498-503.
Rubinstein A, Sickhck M, Gupta A, et al.: Acquired immunodeticiency with
reversed T4/T8 ratios in infants born to promiscuous and drug addicted mothers.
JAMA 1983; 249:2350-6.
Schearer GM, Bernstein DC, Tung KS, et al.: A model for the selective loss
of major histocompatibility complex self-restricted T cell immune responses during
the development of acquired immune deficiency syndrome (AIDS). J Immunol
1986; 137:2514-21.
Scott GB, Buck BE, Leterman JG, et al.: Acquired immunodeficiency syndrome
in infants. N Engl J Med 1984; 310:76-81.
Scott G, Buck B, Leterman J, Bloom F, and Parks W: Acquired immunodefi-
ciency syndrome in Haitian infants. N Eng J Med 1984; 310:76-81.
89

Scott G, Fischl M, Klimas N, et al.: Mothers of infants with acquired immunodefi-
ciency syndrome (AIDS): Evidence for both symptomatic and asymptomatic
carriers. JAMA 1985; 253:363-366.
Shaw GM, Hahn BH, Epstein LG, et al.: HTLV-III Infection in brains of chil-
dren and adults with AIDS encephalopathy. Science 1985; 277: 177.
Sunderam G, McDonald RJ, Maniatis T, Oleske J, et al.: Tuberculosis as a
manifestation of the acquired immunodeficiency syndrome (AIDS). JAMA 1986;
256:362-366.
Weiss SH, Goedert JJ, Sarngadharan MC, et al.: Screening test for HTLV-III
(AIDS agent) antibodies. JAMA 1985; 253:221-225.
Ziegler JG, Cooper DA, Johnson RO, et al.: Postnatal transmission of AIDS-
associated retrovirus from mother to infant. Lancet 1985; 1:896.

APPENDIX E
April 24, 1983 I Vol. 36 I No. 15
MOR8lOllY AND h4ORTAlJlY WEEKLY REPORT
Current Trends
Classification System for Human lmmunodeficiency Virus
  (HIV1 Infection in Children Under 13 Years of Age
INTRODUCTION
With the identification of the causative agent of the acquired immunodeficiency syndrome
(AIDS). a broad spectrum of clinical manifestations has been attributed to infection with the
human immunodeficiency virus &lIV). With the exception of the CDC surveillance definition
for AIDS ( 1.2 1, no standard definitions for other manifestations of HIV infection have been de-
veloped for children. Classification systems published to date have been developed primarily
to categorize clinical presentations in adult patients and may not be entirely applicable to in-
fants and children (3-5).
Physicians from institutions caring for relatively large numbers of HIV-infected children
report that only about half of their patients with symptomatic illness related to the infection
fulfill the criteria of the CDC surveillance definition for AIDS (6, 7).
To develop a classification system for HIV infection in children, CDC convened a panel of
consultants' consisting of clinicians experienced in the diagnosis and management of children
with HIV infection; public health physicians; representatives from the American Academy of
Pediatrics, the Council of State and Territorial Epidemiologists, the Association for Maternal
Child Health and Crippled Children's Programs, the National Institute on Drug Abuse/Alcohol,
Drug Abuse and Mental Health Administration, the National Institute of Allergy and Infectious
Diseases/National Institutes of Health, and the Division of Maternal and Child Health/Health
Resources and Services Administration; and CDC.
GOALS AND OBJECTIVES OF THE CLASSIFICATION SYSTEM
The system was designed primarily for public health purposes, including epidemiologic
studies, disease surveillance, prevention programs, and health-care planning and policy. The
panel attempted to devise a simple scheme that could be subdivided as needed for different
purposes.
`P Brunell. MD, R Dawn. MD, American Academy of Pediatrics; J Chin, MD. State Epidemiologist Callfor-
nia Dept of Health Svcs; L Cooper, MD, St Luke'+Roosevelt Hospital Center, New York City. J Oleske.
MD, MPH, L Epstein. MD, Univ of Medicine and Dentistry of New Jersey; N Luban. MD, Children's HOSPI-
tal National Medical Canter. Washington. DC; S Mailloux. MD, Assoc of Maternal Child Health and CriP-
pled Children's Programs; S Pawha. MD. North Shore Univ Hospital, Cornell University Medical Center.
Manhassett, NY; G Scott, MD. Univ of Miami School of Medicine; R Stiehm. MD, Univ of California. LOS
Angeles; P Thomas, MD, New York CitY Dept of Health; D Wara, MD. Univ of California. San Francisco:
D Williams, MD. Los Angeles County Hospital: J Witte. MD. MPH. Florida Dept of Health and Rehabll&+
tive Svcs.
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES I PUBLIC HEALTH SERVICE
91

                           MMWR                 April 24,1987
HIV Infection - Continued
DEFINITION OF HIV INFECTION IN CHILDREN (Table 1)
Ideally, HIV infection in children is identified by the presence of the virus in blood or
tissues, confirmed by culture or other laboratory detection methods. However, current
tests-including culture-for detecting the virus or its antigens are not standardized and are
not readily available. Detection of specific antibody to the virus is a sensitive and specific in-
dicator of HIV infection in adults, since the majority of adults with antibody have had culture
evidence of infection W 10 1. Similar studies involving children have not been reported. Also,
the presence of passively transferred maternal antibody in infants limits the interpretation of a
positive antibody test result in this age group. Most of the consultants believed that passively
transferred maternal HIV antibody could sometimes persist for up to 15 months. For this
reason, two definitions for infection in children are needed: one for infants and children up to
15 months of age who have been exposed to their infected mothers perinatally, and another
for older children with perinatal infection and for infants and children of all ages acquiring the
virus through other means.
infants and children under 15 months of ege with perinetal infection -Infection in in-
fants and children up to 15 months of age who were exposed to infected mothers in the
perinatal period may be defined by one or more of the following: 1) the identification of the
virus in blood or tissues, 2) the presence of HIV antibody as indicated by a repeatedly reactive
screening test (e.g., enzyme immunoassay) plus a positive confirmatory test (e.g., Western
blot, immunofluorescence assay) in an infant or child who has abnormal immunologic test re-
sults indicating both humoral and cellular immunodeficiency (increased immunoglobulin
levels, depressed T4 [T-helper] absolute cell count, absolute lymphopenia, decreased T4/T8
ratio) and who meets the requirements of one or more of the subclasses listed under class
P-2 (described below), or 31 the confirmation that a child's symptoms meet the previously
published CDC case definition for pediatric AIDS ( 1.2 ).
The infection status of other perinatally exposed seropositive infants and children up to 15
months of age who lack one of the above immunologic or clinical criteria is indeterminate.
These infants should be followed up for HIV-related illness, and they should be tested at regu-
TABLE 1. Summaryof the definition of HlVinfection in children
lnfentr end children under 15 months of ags with perfnatal infection
1)  Virus in blood or tissues
          Or
2) HIV antibody
          and
evidence of both cellular and humoral immune deficiency
      and
one or more categories in Class P-2
31 Symptoms mekg CDC case definition for AIDS
Older &ildrett with perinatal infection and children with HIV infection acquired throu@ other
modes of transmission
1)  Virus in blood or tissues
          Or
2) HIV antibody
          Or
3)  Symptoms meeting CDC case definition for AIDS
92

Vol. 3WNo. lb                   MMWR
HIV Infection - Continued
lar intervals for persistence of antibody to HIV. Infants and children who become seronegative,
are virus-culture negative (if blood or tissue samples are cultured). and continue to have no
clinical or laboratory-confirmed abnormalities associated with HIV infection are unlikely to be
infected.
Older children with perinatal infaction ad children with HIV infaction acquired
through other mode8 of tmnsmisoion -HIV infection in these children is defined by one or
more of the following: 1) the identification of virus in blood or tissues, 2) the presence of HIV
antibody (positive screening test plus confirmatory test) regardless of whether immunologic
abnormalities or signs or symptoms are present, or 31 the confirmation that the child's symp-
toms meet the previously published CDC case definition for pediatric AIDS (1.2 1.
These definitions apply to children under 13 years of age. Persons 4 3 years of age and
older should be classified according to the adult classification system (3 ).
CLASSIFICATION SYSTEM CTabla 21
Children fulfilling the definition of HIV infection discussed above may be classified into one
of two mutually exclusive classes based on the presence or absence of clinical signs and
symptoms (Table 2). Class Pediatric-l (P- 1) is further subcategorized on the basis of the
presence or absence of immunologic abnormalities, whereas Class P-2 is subdivided by
specific disease patterns. Once a child has signs and symptoms and is therefore classified in
P-2, he or she should not be reassigned to class P-l if signs and symptoms resolve.
Perinatally exposed infants and children whose infection status is indeterminate are classi-
fied into class P-O.
a-8 P-O. hdeteninata infection. Includes perfnatally exposed infants and children up
to 15 months of age who cannot be classified as definitely infected according to the above
definition but who have antibody to HIV, indicating exposure to a mother who is infected.
Class P-l. Asymptomatic infection. Includes patients who meet one of the above defini-
TABLE 2. Summary of the classification of HIV infection in children under 13 yearn of age
Class P-O. hdetorminate infection
Class P-l. As'ympternatic infection
    Subclass A.  Normal immune function
     Subclass 6.  Abnormal immune function
    Subclass C.  Immune function not tested
aas P-2 Syrnptanatic infection
Subclass A.  Nonspecific findings
Subclass 6.  Progressive nrurologic disease
Subclass C.  Lymphoid interstitial pneumonitis
Subclass D.  Secondary infectious diseases
Category D-l. Specified secondary infectious diseases listed in the CDC surveillance defini-
          tion for AIDS
Category D-2. Recurrent serious bacterial infections
Category D-3. Other specified secondary infectious diseases
Subclass E. Secondary cancers
Category E-l. Specified secondary cancers listed in the CDC surveillance definition for
          AIDS
Category E-2. Other cancers possibly secondary to HIV infection
Subclass F.  Other diseases possibly due to HIV infection
93

HIV Infection - Continued
MMWR                   April 24, 1987
tions for HIV infection but who have had no previous signs or symptoms that would have led
to classification in Class P-2.
These children may be subclassified on the basis of immunologic testing This testing
should include quantitative immunoglobulins, complete blood count with differential, and T-
lymphocyte subset quantitation. Results of functional testing of lymphocytes fmitogens. such
as pokeweed) may also be abnormal in HIV-infected children, but it is less specific rn compari-
son with immunoglobulin levels and lymphocyte subset analysis, and it may be impractical
Subclass A - Normal immune function. Includes children with no immune abnormalities
associated with HIV infection.
Subclass 8 - Abnonrre/immune function. Includes children with one or more of the com-
monly observed immune abnormalities associated with HIV infection, such as hypergam-
maglobulinemia, T-helper fT4) lymphopenia, decreased T-helper/T-suppressor tT4iTS)
ratio, and absolute lymphopenia. Other causes of these abnormalities must be excluded.
Subclass C - Not tested. Includes children for whom no or incomplete (see above) rm-
munologic testing has been done.
Clamps P-2. Symptomatic infection. Includes patients meeting the above definitions for
HIV infection and having signs and symptoms of infection. Other causes of these srgns and
symptoms should be excluded. Subclasses are defined based on the type of signs and symp-
toms that are present. Patients may be classified in more than one subclass.
Subclass A - Nonspecific findings. Includes children with two or more unexplained non-
specific findings persisting for more than 2 months, including fever, failure-to-thrive or
weight loss of more than 10% of baseline, hepatomegaly. splenomegaly, generalized lym-
phadenopathy (lymph nodes measuring at least 0.5 cm present in two or more sates. with
bilateral lymph nodes counting as one site). parotitis. and diarrhea (three or more loose
stools per day1 that is either persistent or recurrent (defined as two or more episodes of dr-
arrhea accompanied by dehydration within a I-month period).
Subclass f3 - Progressive neurologic disease. Includes children with one or more of the
following progressive findings: 1) loss of developmental milestones or intellectual ability.
2) impaired brain growth (acquired microcephaly and/or brain atrophy demonstrated on
computerized tomographic scan or magnetic resonance imaging scan), or 3) progressive
symmetrical motor deficits manifested by two or more of these findings: paresis. abnormal
tone, pathologic reflexes, ataxia, or gait disturbance.
Subc/ass C - Lmphoid interstitial pneumonitis. Includes children with a histologically
confirmed pneumonitis characterized by diffuse interstitial and peribronchiolar infiltration
of lymphocytes and plasma cells and without identifiable pathogens, or, in the absence of
a histologic diagnosis, a chronic pneumonitis-characterized by bilateral reticulonodular in-
terstitial infiltrates with or without hilar Jymphadenopathy-present on chest X-ray for a
period of at least 2 months and unresponsive to appropriate antimicrobial therapy. Other
causes of interstitial infiltrates should be excluded, such as tuberculosis, Prreumocysfis
carinii pneumonia, cytomegalovirus infection, or other viral or parasitic infections.
subc/uss D - &condufyinfectious discuses. Includes children with a diagnosis of an in-
fectious disease that occurs as a result of immune deficiency caused by infection with HIV.
    Category D-I. Includes patients with secondary infectious disease due to one of the
    specified infectious diseases listed in the CDC surveillance definition for AIDS: Pneu-
    mocystis carinii pneumonia; chronic cryptosporidiosis; disseminated toxoplasmosis
    with onset after 1 month of age; extra-intestinal strongyloidiasis; chronic isosporia-
    sis; candidiasis fesophage81, bronchial, or pulmonary): extrapulmonary cryptococco-
94

Vol. 36INo. 15                   MMWA
HIV Infection - Continued
  sis: disseminated histoplasmosis; noncutaneous, extrapulmonary. or disseminated
   mycobacterial infection (any species other than leprae); cytomegalovirus infection
  with onset after 1 month of age; chronic mucocutaneous or disseminated herpes
  simplex virus infection with onset after 1 month of age; extrapulmonary or dissem-
   inated coccidioidomycosis;  nocardiosis;  and progressive multifocal leuko-
   encephalopathy.
   Category D-2. Includes patients with unexplained, recurrent. serious bacterial infec-
  tions (two or more within a 2-year period) including sepsis, meningitis. pneumonia.
   abscess of an internal organ, and bone/joint infections.
   Category D-3. Includes patients with other infectious diseases, including oral candi-
  diasis persisting for 2 months or more, two or more episodes of herpes stomatitis
  within a year, or multidermatomal or disseminated herpes zoster infection.
subc/ass E - secondary cancers. Includes children with any cancer described below in
categories E-l and E-2.
Category E- 7. Includes patients with the diagnosis of one or more kinds of cancer
known to be associated with HIV infection as listed in the surveillance definition of
AIDS and indicative of a defect in cell-mediated immunity: Kaposi's sarcoma, B-cell
non-Hodgkin's lymphoma. or primary lymphoma of the brain.
Category E-2. Includes patients with the diagnosis of other malignancies possibly as-
sociated with HIV infection.
%bc/ass F - other diseases. Includes children with other conditions possibly due to HIV
infection not listed in the above subclasses, such as hepatitis, cardiopathy, nephropathy.
hematologic disorders (anemia. thrombocytopenia). and dermatologic diseases.
Reported by: AIDS Program, Center for Infectious Diseases, CDC.
Editorial Note: This classification system is based on present knowledge and understanding
of pediatric HIV infection and may need to be revised as new information becomes available
New diagnostic tests, particularly antigen detection tests and HIV-specific IgM tests, may lead
to a better definition of HIV infection in infants and children. Information from several natural
history studies currently under way may necessitate changes in the subclasses based on clini-
cal signs and symptoms.
A definitive diagnosis of HIV infection in perinatally exposed infants and children under 15
months of age can be difficult. The infection status of these HIV-seropositive infants and
children who are asymptomatic without immune abnormalities cannot be determined unless
wrus culture or other antigen-detection tests are positive. Negative virus cultures do not
necessarily mean the child is not infected, since the sensitivity of the culture may be low. De-
creasing antibody titers have been helpful in diagnosing other perinatal infections, such as
toxoplasmosis and cytomegalovirus. However, the pattern of HIV-antibody production in in-
fants is not well defined. At present, close follow-up of these children (Class P-O) for signs
and symptoms indicative of HIV infection and/or persistence of HIV antibody is recommended.
The parents of children with HIV infection should be evaluated for HIV infection, particular-
ly the mother. The child is often the first person in such families to become symptomatic.
When HIV infection in a child is suspected, a careful history should be taken to elicit possible
risk factors for the parents and the child. Appropriate laboratory tests, including HIV serology,
should be offered. If the mother is seropositive. other children should be evaluated regarding
their risk of perinatally acquired infection. lntrafamilial transmission, other than perinatal or
sexual, is extremely unlikely. Identification of other infected family members allows for ap-
propriate medical care and prevention of transmission to sexual partners and future children
(1 7,121.
95

                           MMWR                 April 24, 1987
HIV Infection - Continued
The nonspecific term AIDS-related complex has been widely used to describe symptomat-
ic HIV-infected children who do not meet the CDC case definition for AIDS Thus classiflcatlon
system categorizes these children more specifically under Class P-2.
The development and publication of this classification system does not imply any immedi-
ate change in the definition of pediatric AIDS used by CDC for reporting purposes ( 1.2)
Changes in this definition require approval by state and local health departments However,
changes in the definition for reporting cases have been proposed by CDC and are awaiting
state and local approval.
Written comments are encouraged. They should be mailed to the AIDS Program, Center
for Infectious Diseases, Centers for Disease Control, Atlanta, GA 30333
References
1 .CDC. Update acquwed immunodefictency syndrome (AIDS)-United States MMWR 1984.32
  688-91.
2.CDC Revision of the case defimtlon of acqwed lmmunodeflclency syndrome for nattonal
reporting-UnIted States. MMWR 1985;34:373-5
3.CDC. Classification system for human T-lymphotropic virus type Ill/lymphadenopathy-assoclaled
  virus infections. MMWR 1986;35:334-9.
4.Redfield RR. Wright DC, Tramont EC. The Walter Reed staging classlflcatlon for HTLV-III/LAV tnfec-
  tion.NEngIJMed1986;314.131-2.

August 30, 1985 / Vol 34 I No. 34
517 Educatron and Foster Care of Children
  Infected with HTLV-IWLAV
MORBIDITY AND MORTALITY WEEKLY REPORT
Current Trends
Education and Foster Care of Children Infected
with Human T-Lymphotropic Virus Type Ill/
  Lymphadenopathy-Associated Virus
The information and recommendations contained in this document were developed and
compiled by CDC in consultation with individuals appointed by their organizations to represent
the Conference of State and Territorial Epidemiologists, the Association of State and Territo-
rial Health Officers, the National Association of County Health Officers, the Division of Mater-
nal and Child Health (Health Resources and Services Administrationl. the National Association
for Elementary School Principals, the National Association of State School Nurse Consultants,
the National Congress of Parents and Teachers, and the Children's Aid Societv. The consult-
ants also included the mother of a child with acquired immunodeficiencv syndrome (AIDSI. a
legal advisor to a state education department, and several pediatricians who are experts In the
field of pediatric AIDS. This document is made available to assist state and local health and
education departments in developing guidelines for their particular situations and locations
These recommendations apply to all children known to be infected with human T-lympho-
tropic virus type Ill/lymphadenopathy-associated virus (HTLV-III/LAW. This includes children
with AIDS as defined for reporting purposes (Table 1 I; children who are diagnosed by their
physicians as having an illness due to infection with HTLV-IIIILAV but who do not meet the
case definition; and children who are asymptomatic but have virologic or serologic evidence
of infection with HTLV-III/LAV. These recommendations do not apply to siblings of infected
children unless they are also infected.
BACKGROUND
The Scope of the Problem. As of August 20. 1985. 183 of the 12,599 reported cases of
AIDS in the United States were among children under 18 years of age. This number is expect-
ed to double in the next year. Children with AIDS have been reported from 23 states. the Dis-
trict of Columbia, and Puerto Rico, with 75% residing in New York. California. Flonda. and
New Jersey.
The 183 AIDS patients reported to CDC represent only the most severe form of HTLV-
IWLAV infection, i.e., those children who develop opportunistic infections or maliynancles
(Table 1). As in adults with HTLV-III/LAV infection, many infected children may have milder ill-
ness or may be asymptomatic.
Legal Issues. Among the legal issues to be considered in forming guldelines for the educa-
tion and foster care of HTLV-III/LAV-infected children are the civil nghts aspects of public
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES I PUBLIC HEALTH SERVICE
97

                           MMWR                August 30,lQW
HTL V-III/LA V - Continued
TABLE 1. Provisional case definition for acquired immunodeficiency rrdrome (AIDS)
surveillance of children
For the limited purposes of epidemiologic surveillance. CDC defines a case of pediatric ac-
quired immunodeficlency syndrome (AIDS) as a child who has had:
  1. A reliably diagnosed disease at least moderately indicative of underfying cellular immuno-
   deficiency, and
2. No known cause of underlying cellular lmmunodeficiency or any other reduced resistance
reported to be associated with that disease.
The diseases accepted as sufficiently indicative of underlying cellular tmmunodefictency are
the same as those used in defining AIDS in adults. In the absence of these opportunistic diseases.
a histologically confirmed diagnosis of chronic lymphoid interstitial pneumonitis will be consId-
ered indicabve of AIDS unless test(s) for HTLV-IIIILAV are negative. Congenital infections. a.g ,
toxoplasmosis or herpes simplex virus infection in the first month after bvth or cytamegalowrus
infection in the first 6 months after birth must be exluded.
Specific conditions that must be excluded in a child are:
1. Primary tmmunodeficiency diseases-severe combined immunodefictency. DiGeorge syn-
   drome, Wiskott-Aldrich syndrome, ataxia-talangiectasIa. graft versus host disease. neu-
   tropenta, neutrophil function abnormality, agammaglobulinemla, or hypogammaglobullne-
   mia with raised IgM.
2. Secondary immunodeficiency associated with immunosuppressive therapy. lymphoreticu-
lar malignancy, or starvation
school attendance, the protections for handicapped children under 20 USC. 1401 et seq
and 29 USC. 794, the confidentiality of a student's school record under state laws and
under 20 USC. 12329. and employee right-to-know statutes for public employees m some
states.
Confidentiality bsues. The diagnosis of AIDS or associated illnesses evokes much fear
from others in contact with the patient and may evoke suspicion of life styles that may not be
acceptable to some persons. Parents of HTLV-WLAV-infected children should be aware of
the potential for social isolation should the child's condition become known to others in the
care or educational setting. School, day-care, and social service personnel and others involved
in educating and caring for these children should be sensitive to the need for confidentiality
and the right to privacy in these cases.
ASSESSMENT OF RISKS
Risk Factors for Acquiring HTLV-III/LM Infection and Transmission. In adults and ado-
lescents, HLTV-IWLAV is transmitted primarily through sexual contact (homosexual or hetero-
sexual) and through parenteral exposure to infected blood or blood products. HTLV-IWLAV
has been isolated from blood, semen, saliva, and tears but transmission has not been docu-
mented from saliva and tears. Adults at increased risk for acquiring HTLV-WLAV include
homosexual/bisexual men, intravenous drug abusers, persons transfused with contaminated
blood or blood products, and sexual contacts of persons with HTLV-IWLAV infection or in
groups at increased risk for infection.
The majority of infected children acquire the virus from their infected mothers in the
perinatal period ( I-4). In utero or intrapartum transmission are likely. and one child reported
from Australia apparently acquired the virus postnatally. possibly from ingestion of breast
milk (5). Children may also become infected through transfusion of blood or blood products
that contain the virus. Seventy percent of the pediatric cases reported to CDC occurred
among children whose parent had AIDS or was a member of a group at increased risk of ac-
quiring HTLV-III/LAV infection; 20% of the cases occurred among children who had received
blood or blood products; and for 10%. investigations are incomplete.
98

Vol. 34lNo. 34
HTL V-III/LAV - Continued
MMWR
Msk of Transmission in the School, Day-Care or Foster-Care Setting. None of the
identified cases of HTLV-IWLAV infection in the United States are known to have been trans-
mitted in the school, day-care, or foster-care setting or through other casual person-
to-person contact. Other than the sexual partners of HTLV-IWLAV-infected patients and in-
fants born to infected mothers, none of the family members of the over 12,000 AIDS patients
reported to CDC have been reported to have AIDS. Six studies of family members of patients
with HTLV-IWLAV infection have failed to demonstrate HTLV-IWLAV transmission to adults
who were not sexual contacts of the infected patients or to older children who were not likely
at risk from perinatal transmission (6- 1 f I.
Based on current evidence, casual person-to-person contact as would occur among
schoolchildren appears to pose no risk. However, studies of the risk of transmission through
contact between younger children and neurologically handicapped children who lack control
of their body secretions are very limited. Based on experience with other communicable dis-
eases, a theoretical potential for transmission would be greatest among these children. It
should be emphasized that any theoretical transmission would most likely involve exposure
of open skin lesions or mucous membranes to blood and possibly other body fluids of an in-
fected person.
Risks to the Child with HTLV-III/LAV Infection. HTLV-III/LAV infection may result in im-
munodeficiency. Such children may have a greater risk of encountering infectious agents in a
school or day-care setting than at home. Foster homes with multiple children may also in-
crease the risk. In addition, younger children and neurologically handicapped children who
may display behaviors such as mouthing of toys would be expected to be at greater risk for
acquiring infections. lmmunodepressed children are also at greater risk of suffering severe
complications from such infections as chickenpox. cytomegalovirus, tuberculosis, herpes sim-
plex, and measles. Assessment of the risk to the immunodepressed child is best made by the
child's physician who is aware of the child's immune status. The risk of acquiring iome infec-
tions, such as chickenpox. may be reduced by prompt use of specific immune globulin follow-
ing a known exposure.
RECOMMENDATIONS
1. Decisions regarding the type of educational and care setting for HTLV-III/LAV-infected
children should be based on the behavior, neurologic development, and physical con-
dition of the child and the expected type of interaction with others in that setting.
These decisions are best made using the team approach including the child's physi-
cian, public health personnel, the child's parent or guardian. and personnel associated
with the proposed care or educational setting. In each case, risks and benefits to both
the infected child and to others in the setting should be weighed.
2. For most infected school-aged children, the benefits of an unrestricted setting would
outweigh the risks of their acquiring potentially harmful infections in the setting and
the apparent nonexistent risk of transmission of HTLV-III/LAV. These children should
be allowed to attend school and after-school day-care and to be placed in a foster
home in an unrestricted setting.
3. For the infected preschool-aged child and for some neurologically handicapped chil-
dren who lack control of their body secretions or who display behavior, such as biting,
and those children who have uncoverable, oozing lesions, a more restricted environ-
ment is advisable until more is known about transmission in these settings. Children in-
fected with HTLV-III/LAV should be cared for and educated in settings that minimize
exposure of other children to blood or body fluids.
99

HTLV-III/lAV - Continued
MMW R                August 30.1985
4 Care involving exposure to the infected child's body fluids and excrement, such as
feeding and diaper changing, should be performed by persons who are aware of the
child's HTLV-IIIILAV infection and the modes of possible transmission, In any setting
involving an HTLV-III/LAV-infected person, good handwashing after exposure to
blood and body fluids and before caring for another child should be observed, and
gloves should be worn if open lesions are present on the caretaker's hands. Any open
lesions on the infected person should also be covered.
5. Because other infechons in addition to HTLV-III/LAV can be present In blood or body
fluids, all schools and day-care facilities, regardless of whether children with HTLV-III/
LAV infection are attending, should adopt routine procedures for handling blood or
body fluids. Soiled surfaces should be promptly cleaned with disinfectants, such as
household bleach (diluted 1 part bleach to 10 parts water). Disposable towels or
tissues should be used whenever possible, and mops should be rinsed in the drsinfect-
ant. Those who are cleaning should avoid exposure of open skin lesions or mucous
membranes to the blood or body fluids.
6. The hygrenic practices of children with HTLV-IIIILAV infection may improve as the
child matures. Alternatively, the hygienic practrces may deteriorate if the child's con-
dition worsens. Evaluation to assess the need for a restricted environment should be
performed regularly.
7. Physicians caring for children born to mothers with AIDS or at increased risk of ac-
quiring HTLV-III/LAV infection should consider testing the children for evidence of
HTLV-III/LAV infection for medical reasons. For example, vaccination of infected
children with live virus vaccines, such as the measles-mumps-rubella vaccine (MMR),
may be hazardous. These children also need to be followed closely for problems with
growth and development and given prompt and aggressive therapy for infections and
exposure to potentially lethal infections, such as varicella. In the event that an antiviral
agent or other therapy for HTLV-WLAV infection becomes available, these children
should be considered for such therapy. Knowledge that a child is infected will allow
parents and other caretakers to take precautions when exposed to the blood and
body fluids of the child.
8. Adoption and foster-care agencies should consider adding HTLV-III/LAV screening to
their routine medical evaluations of children at increased risk of infection before place-
ment in the foster or adoptive home, since these parents must make decisions regard-
ing the medical care of the child and must consider the possible social and psycholog-
ical effects on their families.
9. Mandatory screening as a condition for school entry is not warranted based on availa-
ble data.
10. Persons involved in the care and education of HTLV-III/LAV-infected children should
  respect the child's right to privacy, including maintaining confidential records. The
  number of personnel who are aware of the child's condition should be kept at a mini-
  mum needed to assure proper care of the child and to detect situations where the
potential for transmission may increase (e.g.. bleeding injury).
11, All educational and public health departments, regardless of whether HTLV-III/
  LAV-infected children are involved, are strongly encouraged to inform parents, chil-
  dren, and educators regarding HTLV-WLAV and its transmission. Such education
would greatly assist efforts to provide the best care and education for infected children
  while minimizing the risk of transmission to others.
100

Vol. 34lNo. 34
HTL V-III/LA V - Continued
MMWR
References
7.  Scott GB. Buck BE. Leterman JG. Bloom FL. Parks WP Acquwed lmmunodefrcwwcv svndrome I" I"-
  fants.NEnglJMed1984:31076-81
2.  Thomas PA, Jaffe HW, Spira TJ. Reiss R. Guerrero IC. Auerbach D Unexplained unmunodef~c~encv
  in children. A surveillance report. JAMA 1984;252.639-44
3  Rubinstein A, Sicklick M. Gupta A, et al. Acquired immunodeflciencv wth reversed T4:TS ratios I"
  infants born to promiscuous and drug-addlcted mothers JAMA 1983.249 2350-6
4  Oleske J, Minnefor A, Cooper R Jr, et al. Immune deficlencv syndrome I" children JAMA 1983.
  249 2345-g.
5.  Ziegler JB. Cooper DA. Johnson RO, Gold J. Postnatal transrmsslon of AIDS-associated retrowrus
  from mother to infant. Lancet 1965:i 896-8.
6. CDC. Unpublished data.
7  Kaplan JE. Oleske JM. Getchell JP. et al. Ewdence against transmlsslon of HTLV-III/LAV in famlltes
  of children with AIDS. Pediatric Infectious Disease (in press)
8.  Lewin ES, Zack R. Avodele A Communicability of AIDS in a foster care setting lnternatlonal Confer-
  ence on Acquired lmmunodeflciencv Syndrome IAIDS), Atlanta, Georgia. April 1985
9  Thomas PA, Lubin K. Enlow RW. Getchell J. Comparison of HTLV-III serology. T-cell levels. and
  general health status of children whose mothers have AIDS wth children of healthy inner cetv
  mothers in New York. lnternatlonal Conference on Acqurred lmmunodeficlencv Syndrome (AIDS).
  Atlanta, Georgia, April 1985.
t0  Flscht MA, Dickinson G. Scott G, Klimas N. Fletcher M. Parks W Evaluatron of household contacts
  of adult patients wth the acquired immunodefuciencv syndrome lnternatwnal Conference on Ac-
  qwred lmmunodeficiencv Syndrome (AIDS). Atlanta. Georgia. Apnl 1985
11  FrIedland GH, Saltzman 6R. Rogers MF. et al. Lack of household transmission of HTLV-III lnfectlon
  EIS Conference. Atlanta. Georgia. Apnl 1985.
101

"Until we find a vaccine or cure, the only way to stop the spread of AIDS
is through education. "
"The public must become comfortable with the knowledge that quarantine
is not the answer to preventing the spread of AIDS. Education is."
102