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.

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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.

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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.

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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.

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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

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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.

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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.

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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.

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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:

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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.

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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