An Editorial from:
Editorials - Represent the opinions of the authors and THE JOURNAL
and not those of the American Medical Association.
The 'Silent' Legacy of AIDS Children
Who Survive Their Parents and Siblings
Stephen W. Nicholas, MD
Elaine J. Abrams, MD
Over the past decade, efforts to improve the organization
and provision of health care for families affected by the human immunodeficiency virus
(HIV) have focused primarily on infected individuals. However, from the start it has been
clear that children who were or would be orphaned as a result of the epidemic would add
unique complexities to the equation.
How many children have been or will be orphaned by the acquired immunodeficiency syndrome
(AIDS) epidemic? In this issue of JAMA, Michaels and Levine (1) estimate that 18,500
children and adolescents have already been orphaned. By 1996, this number will increase to
45 600 and by the year 2000 to 82000 orphans. Additionally, tens of thousands of young
adults will become motherless.
These estimates, which are similar to recent Centers for Disease Control and Prevention
(CDC)(2) estimated are based on a set of reasonable assumptions that, if anything, appear
to be deliberately conservative. As discussed by the authors, the fertility rates of
intravenous drug users may very well be higher than the age- and race-adjusted cumulative
fertility rate.
The authors also assumed that the rate of AIDS deaths among women will plateau after 1993.
Unfortunately, this is likely to be overly optimistic, not only because of a lack of
treatment options, but more pointedly because there is every reason to believe that the
majority of the estimated 80,000 HIV-infected women (3) in the United States are unaware
of their diagnosis (4,5) Therefore, even if a therapeutic break-through occurred tomorrow,
most HIV-infected women would not receive potentially life-prolonging or saving treatment
of appropriate health care.
The study by Michaels and Levine did not address those HIV-affected children who are
effectively orphaned prior to their parents' deaths. This phenomenon is best reflected by
the living arrangements of HIV-positive children (which we believe parallel those of
uninfected siblings: only 45% of all HIV- positive children who received health care in
New York during 1990 lived with a 33% lived with unrelated foster or adoptive parents (6).
In 1989, 39% of the HIV-positive children born at Harlem Hospital went into foster care
directly from the newborn nursery because of an inability by the mother to provide
adequate care (S.W. Nicholas, MD, unpublished data, 1989.
The sobering estimates by Michaels and Levine, which probably underestimate the true
extent of the problem, are noteworthy because of the tragic aura that surrounds these
young survivors. Most of them, living in that complex place called poverty, have a whole
range of unmet social, educational, and health needs. Many have already experienced a
variety of personal losses unrelated to AIDS. Ironically, AIDS orphans are themselves at
high risk of HIV infection because of early sexual activity, unsafe sexual practices, and
experimentation with drugs. Finally, many of these children will not only experience the
loss of a parent from AIDS, but will also witness the illness and death of one or more
infected siblings. The ultimate legacy of the AIDS epidemic is a deafening silence.
What is to be done Axiomatically, to prevent children from becoming motherless, the
debilitation and death of HIV-infected mothers must be prevented. This cannot be
accomplished unless HIV-infected women are diagnosed and given appropriate treatment and
health care.
Children orphaned by the AIDS epidemic need improved health, social, and, in particular,
psychosocial support services. They often need help from a variety of sources within the
community, such as schools, churches, YMCAs or the juvenile justice system. Because of the
secrecy that results from the stigma of AIDS, from the fear that someone will discover the
"family secret," many potential sources of help are not sought. How best to
disclose HIV- related information, while still protecting confidentiality, is a dilemma
that must be addressed immediately on behalf of these children. Some pilot programs have
begun working on ways to facilitate the disclosure of AIDS- related information to
schools, day-care, and other community programs. More programs like these are desperately
needed.
While some ill HIV-infected women establish future custody plans for their children, most
do not. Lack of planning results from denial, fear of disclosure, lack of a potential
guardian, lack of any formal counseling or legal advice, and inflexible laws. Not
infrequently, elderly grandmothers in ill health become guardians by default when the
mothers die. The health care team, with the assistance of legal counsel, should discuss
future custody plans with every HIV-infected parent. Every state should review its
existing guardianship laws, many of which leave children in legal limbo at the time of a
parent's death, even when a guardian has been named in the parent's will. One solution to
prevent such limbo is the "stand-by guardian ship law," enacted in New York in
1992, which allows an ill or dying woman to name a guardian for her children prior to
mental incapacitation, physical debilitation, or death.
Ultimately, the majority of HIV-affected children will end up in formal or informal foster
care or adoptive care. A variety of innovative foster care programs to meet the complex
needs of HIV-positive children have been created throughout the country. Few programs,
however, have focused adequately on the needs of uninfected siblings. Special HIV units
designed to track and oversee the care of HIV-infected foster children should expand their
programs to include all HIV-affected children. Model programs designed to augment early
permanency planning are urgently needed. Such programs would train, certify, and supervise
a future guardian (typically identified by an ill HIV-infected mother) to provide respite
care, home assistance, and other help in caring for HIV-affected children. As the mother
becomes more ill, the role of this individual would expand as necessary. Ultimately, at
the time of maternal debilitation, mental incapacitation, or death, the individual would
become either a foster parent or an adoptive parent. As with many of the successful AIDS
programs established to date, such model programs very likely will need to cross
traditional boundaries, improve interagency conununications, and establish new
collaborative relationships.
Michaels and Levine have taken the silence that surrounds AIDS orphans and have
transformed it into an audible sound. But this sound must now be amplified into a voice
that can clearly articulate the federal, state, and local actions that are needed to meet
the needs of every person in this nation affected by the AIDS epidemic.
From the Department of Pediatrics. Harlem Hospital Center (Drs.
Nicholas and Abrams), the Babies Hospital (Dr. Nicholas), and Me Incarnation Children's
Center (Dr. Nicholas). College of physicians and surgeons of Columbia University. New
York, NY.
Reprint requests to:
Incarnation Children's Center
142 Audubon Ave.
New York, NY 10032 (Attn: Dr. Nicholas).
3478 JAMA, December 23M. 1992-Vol. 268. No. 24
----------------------------
1. Michaels D, Levine C. Estimates of the number of motherless youth
orphaned by AIDS in the United States. JAMA. 1992;268:3461.
2. Caldwell MB, Fleming PL, Oxtoby MJ. Estimated number of AIDS orphans in the United
States. Pediatrics. 1992;90:482.
3. Gwinn M. Pappaioanou M. George JR, et al. Prevalence of HIV infection in childbearing
women in the United States: surveillance using newborn blood samples. JAMA
1991;265:1704-1708
4. Krainski K, Borkowsky W, Bebenroth B. Failure of voluntary testing for human
immunodeficiency virus to identify infected parturient women in a high-risk population. N.
Engl. J. Med. 1988;818:185.
5. Landesman S, Minkoff H, Holman S, MeCalla S,Sijin O. Serosurvey of human
immunodeficiency virus infection in parturients: implications for human immunodeficiency
virus testing programs of pregnant women. JAMA 1987;258:2701-2703.
6. Pediatric HIV Continuum of Care Study Final Report Albany, NY: AIDS Institute, New York
State Department of Health; July 10, 1992.
|
|
An introduction to the CWA Project |
|
|
Please read the J.A.M.A. editorial and the TIME magazine article |
|
|
Hope you had a chance to read our story in Good Housekeeping magazine |
|
|
Would you like to register as an Adoptive or Foster parent? |
|
|
Like to request additional information about how we can help or how you can help us? |
|
|
Who we are and what we do |
|
|
White House Visit. |
|
|
Hillary Clinton , Dave Thomas Speech at White House |
|
|
Additional resources |
|
|
Please visit our special Gift Shop |
|
|
Thanks to our Corporate Sponsors |
email webmaster for comments/questions |
