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1988 ;ssion ] HOUSE OF REPRESENTATIVES
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CONTINUING JEOPARDY:
CHILDREN AND AIDS
A STAFF REPORT
OF THE
SELECT COMMITTEE ON CHILDREN,
YOUTH, AND FAMILIES
ONE HUNDREDTH CONGRESS v-
SECOND SESSION
SEPTEMBER 1988
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CALIFORNIy

SELECT COMMITTEE ON CHILDREN, YOUTH, AND FAMILIES
GEORGE MILLER, California, Chairman

WILLIAM LEHMAN, Florida DAN COATS, Indiana

PATRICIA SCHROEDER, Colorado THOMAS J. BLILEY, Jn., Virginia
LINDY (MRS. HALE) BOGGS, Louisiana FRANK R. WOLF, Virginia
MA’I'I‘HEW F. MCHUGH, New York NANCY L. JOHNSON, Connecticut
TED WEISS, New York BARBARA F. VUCANOVICH, Nevada
BERYL ANTHONY, Jn., Arkansas JACK F. KEMP, New York
BARBARA BOXER, California GEORGE C. WORTLEY, New York
SANDER M. LEVIN, Michigan RON PACKARD, California
BRUCE A. MORRISON, Connecticut BEAU BOULTER, Texas

J. ROY ROWLAND, Georgia J. DENNIS HASTERT, Illinois
GERRY SIKORSKI, Minnesota CLYDE C. HOLLOWAY, Louisiana
ALAN WHEAT, Missouri FRED GRANDY, Iowa

MA’I'I'HEW G. MARTINEZ, California
LANE EVANS, Illinois

RICHARD J. DURBIN, Illinois
THOMAS C. SAWYER, Ohio

DAVID E. SKAGGS, Colorado

Comm-nan STAFF

ANN ROSEWATEE, Stafl‘ Director
MARK Sounm, Minority Stafl‘ Director
CAROL M. S'rA'm'ro, Minority Deputy Stafl‘ Director

(11)

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LETTER OF TRAN SMI’I'l‘AL

To: ll” Members Select Committee on Children, Youth, and Fami-
ws:

I commend to your attention this staff report, “Continuing Jeop-
ardy: Children and AIDS,” that provides an update of the Select
Committee’s December 1987 report, “A Generation in Jeopardy:
Children and AIDS.”

The study highlights the continuing rapid growth in reported
cases of AIDS (Acquired Immune Deficiency Syndrome) among chil-
dren, the widening geographic spread of HIV infection among this
population, and the progress made in addressing the problems
since the issuance of the Committee’s initial report.

The Committee will continue its efforts to monitor closely the
circumstances of this highly vulnerable group of American chil-
dren and their families and to seek timely and appropriate re-
sponses not only to ensure their humane treatment but also to
stem the stream of children entering this population.

Sincerely,
GEORGE MILLER,
Chairman.

(III)

 

 

CONTENTS

Introduction
HIV Infection and AIDS Continue to Affect More Children in More Places;
Largest Increases and Greatest Crises Facing Infants and Young Children....
Risks of HIV Infection Among Adolescents Increasingly Recognized, but Infor-
mation on the Population Still Scarce ......
Hemophiliacs: While New Infection Unlikel , High Prevalence of HIV Among
the Population Poses Continuing Serious roblems .............................................
Care of HIV-Infected Children Increasingly Challenges Health Care and
Social Service Systems; More Humane and Cost-Effective Care Sought ...........
Need for Improved and Expanded Drug Abuse Prevention and Treatment
Efforts Undeniable and Growing ..
Education to Prevent HIV Infection Increases, but Remains Insufficient ...........
The National Response: Still Too Little .. '
References

 

 

 

 

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CONTINUING JEOPARDY: CHILDREN AND AIDS

INTRODUCTION

At the end of 1987 the Select Committee on Children, Youth, and
Families issued a report, “A Generation in Jeopardy: Children and
AIDS,” documenting the impact of the epidemic on the Nation’s
young children, adolescents and their families. Since that time, we
have continued to observe the insidious sweep of HIV infection
across the Nation and its escalating effects on the youngest and
most vulnerable.

These critical issues have commanded the attention of a growing
number of experts and advocates. There are more reports address-
ing HIV infection among children and youth (1); a new coalition of
national health, education and child welfare agencies has formed
to educate its memberships, policymakers and the public (2); and
children and youth with AIDS or who test antibody positive are
now at the very least a notable part of discussions among research-
Srs, service providers and policymakers dealing with the HIV epi-

em1c.

Congress has led efforts to increase funding for research and
other AIDS related activities, and has begun to address critical
treatment and care issues for HIV-infected children. Since the
Select Committee’s initial report, Congress has approved and is
considering additional health and foster care legislation that will
help states and communities serve infants and young children with
or suspected of having HIV infection. The continuing urgent chal-
lenge to Congress is two-fold: to support the development of more
humane and cost—effective treatment and care, and to stop the
spread of HIV, thus preventing the stream of children from becom-
ing infected and’entering the systems of care in the first place.

This report presents a snapshot of the progress made and the dis—
tance yet to cover in addressing the magnitude of the epidemic and
its unrelenting assault on children and their families. We have
tracked the course of the epidemic among children and youth with
the help of noted experts who have testified before the Committee
in 1988 and other experts whom we have interviewed, and have re-
ported trends based on surveillance data gathered by the Centers
for Diffsease Control as well as reports issued during the last several
mont .

HIV INFECTION AND AIDS CONTINUE To AFFECT MORE CHILDREN IN
MORE PLACES; LARGEST INCREASES AND GREATEST CRISES FACING
INFANTS AND YOUNG CHILDREN

As of August 1, 1988, there were 1,108 reported cases of AIDS
among children under 13, an increase of 48% from 750 cases at the
end of the 1987. Reported cases among adolescents aged 13—19 to-

(1)

2

taled 283 at the beginning of August, an increase of approximately
80 cases since the end of 1987 and more than twice the number of
cases reported among that age group at the time of the Select Com-
mittee’s first hearing in February 1987 on the issue of AIDS and
children. Children under age 5 have registered similar large in-
creases in the number of reported cases, up 44% from 644 to 928
between the beginning of the year and August 1, 1988. [See Figure
1; (3)] Experts project 10,000 to 20,000 pediatric AIDS cases by
1991. (4)

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Although the numbers of reported cases among these populations
are still relatively low, the rate of increase continues upward at a
frightening pace.

Dr. James Oleske, a pioneer in worki with infants and young
children with HIV infection at Children’s ospital in Newark, New
Jersey, told the Committee 'in July 1988 hat sadly, but not unex-

y, he continues to see an upswing numbers, with most of
the population born during 1987. :He re rted that the screening
clinics affiliated with Newark’s Children’ Hospital see some 30-35
potentially new patients every two weeks. (5)

The geographic spread of [reported also is widening. In Feb-
ruary 1987, 33 states and territories reported cases of AIDS among
children under 13; 40 were reporting atéthe end of 1987; and 44
were reporting at the beginning of August 1988. Nearly one-third
of those jurisdictions reported 15 or more cases of pediatric AIDS,
compared to 5 states in February 1987. The most affected areas
continue to be New York, New Jersey, Florida and California, each
reporting 75 or more cases at the beginning of August. Texas,
Puerto Rico, Connecticut, Maryland, Illinois, Pennsylvania, Massa-
chusetts and Georgia comprise a second cluster, with each of these
stéates reporting more than 20 pediatric AIDS cases as of August 1,
1 88. (6)

There are still few data on the incidence of new HIV infection
that could allow better estimates of the spread and course of the
epidemic. Generally, studies have shown a lower incidence of HIV
infection among homosexual men in the last few years than in the
early 1980s, and procedures to screen and safeguard the supply of
blood and blood products have reduced new infections among hemo-
philiacs and transfusion recipients. In contrast, the incidence of in-
fection is rising fast among populations of IV drug abusers. (7)

The vast majority of HIV-infected younger children (under age
13, and particularly under age 5) continue to become infected
before or during birth by their mothers who used IV drugs or were
the sexual partners of IV drug abusers. As of August 1, 1988,
nearly 80% of the reported AIDS cases among children under 13
were attributed to transmission from a parent with or at risk of
AIDS; 13% to contaminated blood transfusion; 6% to receipt of con-
taminated clotting factor for control of hemophilia; and 4% unde-
termined. (8)

Oleske also noted that over the past year, he has become “reim-
pressed with sexual abuse as a real and legitimate means of infec-
tion.” (9) Out of 15 sexually abused preadolescents seen in his clin—
ics, three were infected.

The epidemic also is continuing to ravage poor and minority chil-
dren, their families and communities disproportionately. Many of
these communities and their residents lack the resources and social
supports to cope with the chronic and deadly effects of HIV infec-
tion. (10) As of August 1, 1988, more than 80% of the reported
cases among children under 5, and about half of those 5—12 and 13—
19 were among minority group children. The proportions have re-
mained fairly steady since the end of 1987 when they were 82%,
52% and 51% respectively. (11)

5

RISKS 01" HIV INFECTION AMONG ADOLESCENTS INCREASINGLY
RECOGNIZED, BUT INFORMATION ON THE POPULATION STILL SCARCE

Among the “20 most important findings and recommendations”
made by the Presidential Commission on the Human ImmunO—defi-
ciency Virus Epidemic, adolescents are highlighted as a separate,
special target population and addressed as follows:

The problems Of teenagers, and especially runaway
youth, that place them at increased risk for HIV exposure
must be aggressively addressed. The spread of HIV within
the heterosexual population should be better defined and
accurate information communicated to the general public.
Inaccurate and misleading statements suggesting that HIV
cannot be spread through heterosexual activity are unwar-
ranted. (12)

While there are no large scale studies on adolescents, regional
and local studies in areas Of highest HIV prevalence confirm rising
numbers of youth with AIDS as well as the danger of infection
among many youth who engage in risk behaviors. Analysis Of the
rates of reported AIDS cases for 13—21 year-olds shows that the
number is doubling every ear (13, 14). The Presidential Commis-
sion cited preliminary resu ts from a Baltimore study showing that
the prevalence of HIV infection in adolescents using Baltimore city
health clinics is 1.5 to 2.0 percent (15). In New York City, program
staff at Covenant House, an agency that provides shelter, counsel-
ing and other services to runaway youth, have reported rising
numbers of young people who test antibody positive. (16)

Unfortunately, national AIDS surveillance data group adoles-
cents with adults. The surveillance information does not provide
separate data on reported cases among adolescents by state or
SMSA (Standard Metropolitan Statistical Area) of residence, or by
categories of transmission. Karen Hein, M.D., of the Department of
Pediatrics at Albert Einstein College of Medicine in New York and
expert on adolescents and HIV infection, has repeatedly told the
Committee Of the dearth Of information on adolescents and the epi-
demic. This lack of information creates difficulties for both gauging
the spread Of HIV infection among this population and roviding
appropriate prevention and care. According to Hein, ‘ we don’t
have a clue as to the natural course of HIV infection among adoles-
cents, and we really need to look at that.” (17)

A recent examination of adolescent AIDS cases in New York City
by mode Of transmission indicated that 44% were homosexual/bi-
sexual males; 23% intravenous drug abusers; 11% female partners;
11% those infected by blood products; and 11% other. While the
major modes of spread of HIV among adolescents are like that of
adults—through sexual contact or by sharing needles with an in-
fected person—there are differences in transmission patterns be-
tween adults and adolescents as well as between children and ado-
lescents. Reported cases among adolescents show proportionately
fewer attributable to homosexual/bisexual contact, more IV drug
abuse, and much more heterosexual transmission. The drug abuse
and sexual activity connection is underscored in a recent report
from Covenant House indicating that of the 30 youths there who

6

tested positive in the last year, three-fourths said that they had en-
gaged in sex related to their crack-cocaine habits. (18)

HEMOPHILIACS: WHILE NEW INFECTION UNLIKELY, HIGH PREVA-
LENCE or HIV AMONG THE POPULATION POSEs CONTINUING SERI-
OUS PROBLEMS

According to the National Hemophilia Foundation, approximate-
ly 12,000 hemophiliacs have been infected with HIV, and 5% to
25% of their sexual partners test positive. As of July 25, 1988, 712
cases of AIDS were reported among hemophiliacs, with 59 cases
among children under 13 and 88 cases among adolescents aged 13-
19. (19) According to Louis Aledort, M.D., Professor and Vice Chair-
man of the Department of Medicine at the Mount Sinai School of
Medicine in New York, HIV-infected hemophiliac patients still
take a lot longer to progress from initial infection to symptomatic
disease. He also reports, however, that we “haven’t progressed very
far” over the last year in addressing HIV infection among this pop-
ulation, and “don’t have a good handle on” how to reach and edu-
cate especially young persons who are infected. (20) ‘

Dorothy Hancock, a counselor with the Mt. Sinai program for he-
mophiliacs, told the Committee in July that the young people as
well as their parents say that they cannot handle the situation.
She has observed that although there are “no common patterns,
how well families have dealt with hemophilia suggests how well
they might deal with AIDS.” (21) Practitioners who work with both
HIV-infected hemophiliac adolescents as well as HIV-infected
youth in the general population have also noted similarities be-
tween them in that individuals in both groups deny their status
an}? in some cases, act out in ways dangerous to themselves and
ot ers.

CARE OF HIV-INFECTED CHILDREN INCREASINGLY CHALLENGES
HEALTH CARE AND SOCIAL SERVICE SYSTEMS; MORE HUMANE AND
COST-EFFECTIVE CARE SOUGHT

The care of babies and young children exposed to HIV has at-
tracted the most attention, public concern and formal action to
date due to rapidly growing numbers and the increasing, complex
and costly responsibilities for public health and welfare systems.

In some inner-city clinics, 4% to 5% of pregnant women are in-
fected. (22) A study of births in New York City over 6 months re-
vealed that one in every 77 babies born is seropositive. (23) Data
from a recent assessment by the New York State Health Depart-
ment indicated that in some parts of New York City one in 22
women who gave birth were infected. (24)

Many of these babies are medically fragile at birth because of
drug exposure and/or HIV infection. Oleske reported to the Com-
mittee that the comprehensive case management approach em-
ployed in the program at Children’s Hospital in Newark has “im-
proved the quality of life and more importantly, its duration.” Of
the total 168 young patients seen, 40 have expired, a lower overall
mortality than the national average. (25)

Some of these children may be able to leave the hospital, but be
cause their parents are unable to care for them and few other ap-

7

propriate arrangements are available, these infants often spend a
good measure of their lives in hospitals. Few alternatives to hospi-
tal-based care exist for the babies and young children who may not
have a home to go to and who are difficult children to care for be-
cause of their known and suspected medical problems. Oleske re-
ports that approximately 40% of the children he serves are under
the care of the state through departments of child protective serv-
ices.

The still small number of reported cases of AIDS among chil-
dren—even among infants and young children who have the fastest
growing rate—dramatically understates the problems presented by
new cases of HIV infection which may not yet meet AIDS cases re-
porting definitions, and the problems of drug exposure that place
many children at risk of HIV infection in the first place.

In the Select Committee’s hearing on AIDS and young children
in February 1987, Jean McIntosh, Assistant Director of the Depart-
ment of Children’s Services in Los Angeles County, reported that
the numbers of requests for foster care for drug-exposed infants
and toddlers increased about 1000% between 1981 and 1986 from
132 to 1,363 cases. (26) At the Committee’s hearing in Los Angeles
in April 1988, the Department’s director, Robert Chaffee, reported
that the number of these referrals rose to 1,916 in 1987. (27) At the
same hearing, Xylina Bean, M.D., Director of the Intermediate
Care Nursery and Infant Follow-up Programs at Martin Luther
King Jr. General Hospital in Los Angeles, reported a nearly 100%
increase at that hospital alone from 1985 to 1986 in the number of
babies (more than 400) born having prenatal drug exposure. (28)

Non-hospital based care for these children is not only more
humane but is increasingly shown to be much more cost efficient.
The Committee’s report on children and AIDS described several
proposed and ongoing efforts to serve HIV-infected children in non-
hospital based settings. In a hearing of the Select Committee this
spring, the Committee also learned about the San Francisco Fragile
Infant Program, which provides a specialized foster care setting
with attendant health services for medically fragile infants. This
program costs from $1682 to under $2000 per infant/per month
in contrast to the Medicaid cost for an infant in a hospital of
$6375. (29)

The Presidential Commission highlighted this imperative to iden-
tify and support more humane and cost-effective approaches:

While hospitals and service agencies are stretched to
their limits in some areas with a high incidence of pediat-
ric HIV infection, other areas have yet to face the prob-
lem. While a serious problem now, care of an increasing
number of HIV-infected children may overwhelm hospital
budgets in the future unless a plan is developed to place
these children in more appropriate settings, either with
their own families or, where that is not possible, in a
foster home or small group home. (30)

The Commission further highlighted the pressing needs of this
population and the challenges facing their families and systems in-
volved with their care in another of its major recommendations:

8

The problem of HIV-infected “boarder babies” is one of
the most heartrending the Commission has encountered.
These children live their entire brief and tragic lives in
hospital wards, with only doctors and nurses as family.
The expected 10,000 to 20,000 HIV-infected births by 1991
also call attention to the critical need for foster homes.
Unless the problems of the disadvantaged are addressed,
the HIV epidemic will continue to make inroads into these
populations and we will see large increases in both pediat-
ric and drug-related HIV disease. (31)

In addition to these basic care concerns, a new issue related to
the care of these HIV-infected babies has emerged since last year.
In the last two months, Children’s Hospital in Newark has begun
AZT drug treatment with children. According to Oleske, the Divi-
sion of Youth and Family Services in New Jersey has denied to the
babies under its charge participation in clinical trials of AZT drug
treatment, which holds promise for improving the span and quality
of life Of HIV-infected children. Oleske calls this a real problem
saying the Division of Youth and Family Services “in the name of
protecting children, really may be harming children.” (32)

NEED FOR IMPROVED AND EXPANDED DRUG ABUSE PREVENTION AND
TREATMENT EFFORTS UNDENIABLE AND GROWING

Added to the devastation already wreaked by drug abuse, popula-
tions of drug abusers will show the largest increases in new HIV
infection in the coming years and constitute “a major port Of entry
for the virus into the larger population” with a grave impact on
women of childbearing age and young children. (33)

Although intravenous drug abusers constitute only 25
percent of AIDS cases in the United States, 70 percent of
all heterosexually transmitted cases in native-born citizens
come from contact with this group. In addition, 70 percent
of all perinatally transmitted AIDS cases are the children
Of those who abuse intravenous drugs or whose sexual
partners abuse intravenous drugs.

Despite the present danger and growing threat, treatment
reaches only about 12% of the estimated 1.2—1.3 million intrave-
nous drug abusers in the Nation. The Commission concluded that
“it is imperative to curb drug abuse, especially intravenous drug
abuse, by means Of treatment in order to slow the HIV epidemic, ’
and recommended a national policy of providing “treatment on
demand” for intravenous drug abusers. (34)

The Commission pointed further to the cost effectiveness of in-
vesting in prevention and treatment:

Given the fact that temporarily alleviating the health ef-
fects of symptomatic HIV infection can cost as much as
$100,000 per person and that imprisonment costs an aver-
age of $14,500 per person per year, . . . the investment
necessary to provide for intravenous drug abuse “treat-
ment on demand” is sound public policy. Current treat-
ment modes for intravenous drug abusers, including meth-
adone maintenance and drug-free residential communities,

9

reduce illicit drug use, improve employment among ad-
?gts, reduce crime rates, and improve social functioning.
(

Drug abuse alone is estimated to cost the Nation $60 billion an--
nually' 1n health care expenditures, law enforcement, related crimi-
nal activity and reduced productivity. (36)

The Institute of Medicine/National Academy of Sciences (IOM/
NAS) also emphasized the need for expanded treatment and pre-
vention in its recent report:

The fear of AIDS will probably lead some IV drug users
to seek treatment for their addictions. But in the United
States as a whole, the availability of treatment for IV drug
use was less than the demand even before the AIDS epi-
demic. Thus, a major possibility for reducing illicit IV drug
use and the transmission of HIV is expansion of the
system for treating IV drug use. Through treatment, users
who have not been infected with HIV could greatly reduce
their chances of being infected, and users who have al-
ready been infected would be less likely to infect others.
At a pure] economic level, treating AIDS costs from
$50,000 to 150,000 per case, whereas drug abuse treat-
ment costs as little as $3,000 per patient per year in nonre-
sidential programs. (37)

EDUCATION To PREVENT HIV INFECTION INCREASES, BUT REMAINS
INSUFFICIENT

While the number of states mandating AIDS education in the
schools has grown over the last several months, still only half have
acted. In addition, little is known about what the mandates actual-
ly mean in educational practice in the various states. IOM/NAS
also reported in its update that much of the activity has been
fraught with controversy that impedes rather than fosters what-
ever educational effort exists.

At the end of 1987, the Committee reported that according to the
National Association of State Boards of Education (N ASBE), 18
states had mandated some AIDS education. As of the beginning of
July, 25 states had state board of education or legislative mandates
for AIDS education. NASBE plans to conduct another formal
survey this fall. (38)

Although AIDS information is gaining broader distribution with
more states mandating AIDS education and with activities such as
the mailing of the AIDS information brochure from the US. Public
Health Service to all American homes, questions regarding effec-
tiveness of the information and the tough problems of getting indi-
viduals to change behavior remain unanswered. According to a
new assessment of AIDS education by the Office of Technology As-
sessment, “although education on AIDS and sexuality appears to
increase adolescent knowledge, there is little evidence that youth
translate such knowledge into changes in their risk behaviors.” (39)

Oleske recently commented that ‘It 1s not so much that we need
to educate, but we need to motivate” .That’ s the hard part. ” He
has emphasized that prevention cannot be limited to education and

10

behavior change alone. His experience in Newark has demonstrat-
ed that “AIDS is a disease of poverty and drug abuse, and until we
address these larger issues, we won’t really solve the problems of
AIDS.” (40)

Among its major recommendations, the Presidential Commission
renewed the call for comprehensive and age appropriate education
programs:

Education programs must continue to be developed and
implemented for the near term, and for the greatest possi-
ble impact on the next generation. Age appropriate, com-
prehensive health education programs in our nation’s
schools, in kindergarten through grade twelve, should beta
national priority. (41)

THE NATIONAL RESPONSE: STILL Too LI'I'I‘LE

In 1986 in its initial assessment and report, Confronting AIDS,
IOM/ N AS decried the national response and dedication of national
resources to combat the HIV epidemic. (42)

In June 1988, while citing and commending progress in areas of
biomedical research, broad-basedreeducation, ongoing Centers for
Disease Control surveillance, and the extensive and impressive
work of the Presidential Commission, IOM/NAS concluded again
that the federal response remains too uneven with a continuing
lack of coordinated federal policies and leadership. (43)

The lack of guidance in federal policymaking is mani-
fested by false starts and misguided efforts. . . . In the ab-
sence of strong federal leadership, a variety of private or-
ganizations, foundations, volunteer groups, professional or-
ganizations, and state and local governments have taken
the initiative to create education programs, formulate laws
and regulations, and address other facets of the epidemic.
These efforts are an enormous contribution to the progress
that has been made thus far against AIDS and HIV infec-
tion; nevertheless, the absence of coherent'national direc-
tion condemns many localities to “reinvent the wheel”
when it comes to setting local policy and increases the
likelihood that failed experiments will be repeated from
place to place. (p. 166)

Where direction has been reasonable, the lack of forceful
policymaking may have done little harm. But where public
policy has been clearly inadequate—for instance, in the
provision and financing of health care, in setting stand-
ards for antibody testing and antidiscrimination, in ad-
dressing IV substance abuse, and in furnishing overarch-
ing direction for all components of the government and the
private sector—the nation has suffered from the absence of
strong federal leadership. (p. 167)

The year-long Presidential Commission on the Human Immuno-
deficiency Virus Epidemic provided in 1987 and 1988 the most visi-
ble federal policymaking activity on HIV infection and AIDS. This
effort was nearly undermined by disorganization and dissension in
the first few months of its existence. Although never without con-

11

troversy, from the latter part of 1987 through the issuance of its
final report, the Presidential Commission, under the chairmanship
of retired Adm. James Watkins, succeeded in bringing to the pub-
lic’s attention the known facts about HIV infection and its impact,
and in focusing efforts on what could and ought to be done.

The Commission concluded its work and issued its final report in
June 1988. The recent work of IOM/NAS also called for significant-
ly greater efforts in many of the same areas designated by the
President’s Commission and reaffirmed its earlier recommendation
that a national commission on AIDS and HIV infection be estab-
lished with a five-year renewable term. (44)

Early in August, President Reagan responded to the Commis-
sion’s effort with a plan that has been criticized for failing to in-
clude many of the Commission’s recommendations.

Congressional action continues to focus mainly on funding sup-
port for AIDS related programs principally under the Public
Health Service. The House and Senate have agreed to FY 1989 ap-
propriations of $1.2 billion for AIDS disease control and research
activities.

Since the Select Committee’s initial report, Congress approved as
part of the 1987 Budget Reconciliation Act legislation authorizing
demonstration programs to care for infants with or suspected of
being HIV infected and abandoned in the care of hospitals, and a
study of foster care for children with AIDS by the Department of
Health and Human Services. During the last few months, legisla-
tion (H.R. 4843) to improve strategies to serve infants abandoned
because of HIV infection or drug abuse has received action by the
relevant committees in the House; in 1987, the Senate approved
S. 945, a similar measure.

In addition to these actions, a provision of the new Medicare Cat-
astrophic Coverage Act, allows states to develop special individual-
ized services for these infants and young children that will be paid
for under the Medicaid program.

REFERENCES

1. Recent reports specifically on children and youth include: “AIDS Children and
Child Welfare,” Macro Systems, Inc. for the Department of Health and Human
Services, March 1988; “Pediatric HIV Infection,” Children Today, May-June 1988;
“AIDS: A complex new threat to children’s survival,” CDF Reports, June 1988;
“AIDS and Adolescents: The Time for Prevention is Now,” Center for Population
Options, 1988.

2. Several national health, education, child welfare and advocacy oups joined to-
gether in forming the Pediatric AIDS Coalition at the end of 1987. embers include:
American Academy of Pediatrics, American College of Obstetricians and Gynecolo-
gists, National Association of Communit Health Centers, American Psychological
Association, Western Association of Children’s Hospitals, American Nurses Associa-
tion, Children’s Defense Fund, National Education Association, Child Welfare
{league of America, Inc., National Association of Children’s Hospitals and Related
nstitutions.

3. Centers for Disease Control (CDC), AIDS Weekly Surveillance Reports.

4. Oleske, J., “Natural History of HIV Infection II,” Rlefort of the Sur on Gener-
al’s Worksho on children with HIV Infection and Their amilies, April 987.

5. Oleske, ., Personal Communication, July 1988.

6. CDC, op. cit.
1.9,}?8In8titute of Medicine/National Academy of Sciences, Confronting AIDS, Update

I p' '
8. CDC, op. cit.
9. Oleske, J ., Personal Communication, op. cit.

12

10. “A Generation in Jeopardy: Children and AIDS,” A Report of the Select Com-
mittee on Children, Youth, and Families, US. House of Representatives, December
1987.

11. CDC, op. cit.

12. Report of The Presidential Commission on the Human Immunodeficiency Virus
Epidemic, June 24, 1988, p. XIX.

13. Vermund, S.H., et a1., “Adolescent AIDS in New York City (NYC): Predomi-
nance of Sexual and Drug-related Transmission,” IV International Conference on
AIDS, June 1988.

14. Hein, K., Personal Communication, July 1988.

15. Presidential Commission, op. cit.

16. “Syphilis Surge and Crack Use Raising Fears on Spread of AIDS,” The New
York Times, June 29, 1988.

17. Hein, K., op. cit.

18. The New York Times, op. cit.

19. CDC, Personal Communication, August 1988.

20. Aledort, L., Personal Communication, July 1988.

21. Hancock, D., Personal Communication, July 1988.

22. Presidential Commission, op. cit, p. 12.

23. New York State Department of Health, July 1988.

24. Ibid.

25. Oleske, J., Personal Communication, op. cit.

26. McIntosh, J., Testimony at Hearing: “AIDS and Young Children: Emerging
Issues,” Select Committee on Children, Youth, and Families, U .8. House of Repre-
sentatives, Berkeley, CA, February 21, 1987.

27. Chaffee, R., Testimony at Hearing: “Young Children in Crisis: Today’s Prob-
lems and Tomorrow’s Promises,” Select Committee on Children, Youth, and Fami-
lies, U.S. House of Representatives, Los Angeles, CA, April 15, 1988.

28. Bean, X., Testimony at Hearing: “Young Children in Crisis: Today’s Problems
and Tomorrow’s Promises, op. cit.

29. Johnson, L., Testimony at Hearing: “Young Children in Crisis: Today’s Prob-
lems and Tomorrow’s Promises,” op. cit.

30. Presidential Commission, op. cit.

31. Ibid. .

32. Oleske, J ., Personal Communication. op. cit.

33. Presidential Commission. op. cit.

34. Ibid.

35. Ibid.

36. Ibid.

37. IOM/NAS. 1988. op. cit.

38. National Association of State Boards of Education, Personal Communication,
July 1988.

39. Office of Technology Assessment. “How Effective is AIDS Education?” US.
Congress, June 1988.

40. Oleske, J ., Personal Communication, op. cit.

41. Presidential Commission, op. cit.

42. IOM/NAS, Confronting AIDS, 1986.

43. IOM/NAS, 1988. op. cit.

44. Ibid.

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