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.