protecting the weakest link: a proposal for universal, unblinded pediatric hiv testing, counseling...

Journal of Community Health, Vol. 20, No. 2, April 1995

PROTECTING THE WEAKEST LINK: A PROPOSAL FOR UNIVERSAL,

UNBLINDED PEDIATRIC HIV TESTING, COUNSELING AND TREATMENT

Colin Crawford, MA, JD

ABSTRACT: This pape r argues that a system of unblinded, universal testing, counseling and t rea tment for pediatric HIV should be implemented immediate ly in New York State. First, it argues that New York's heal th and social services bureaucracies, in conjunction with special interests that do not represent the interests of children, have resisted efforts to have infants tested and treated for HIV. Second, the paper suggests that the campaign against universal infant screening and t rea tment reflects our society's continuing, calculated decision to ignore the complexity of the H I W A I D S epidemic. Thi rd , the pape r outlines a plan for a p rompt and comprehensive system of HIV testing, counseling and t rea tment for infants and children, as well as for their parents and families, who are HIV-positive.

In the process o f articulating the above positions, the paper documents the failure o f universal bl inded infant HIV screening in New York since 1987. It fur ther explores the inadequacies o f the proposed efforts by state and city regulatory authorities to improve the testing and counseling available for pediatric HIV. Al though encour- aged by New York State's recent move aggressively to test and treat HIV-posit ive infants and chi ldren in foster care, the paper argues that this effort must be expanded to apply to the entire newborn population. Finally, the p a p e r examines in detail the limitations of testing and counseling provided to chi ldren in the foster care system.

I N T R O D U C T I O N

T h e Problem

In recent years, in the course of the daily work of the Association to Benefit Children (ABC), a New York City-based nonprofit organiza-

Colin Crawford, MA, JD, is Counsel to the Association to Benefit Children, New York, New York, and Instructor of Law at Brooklyn Law School

Leonardo Renna, a third-year student at Brooklyn Law School, provided editorial assistance on an earlier draft of this paper, and the author wishes to express his appreciation for that assistance

An earlier version of this paper was presented as part of the symposium, "Turning Points: Key Policy Debates on HIV in the Inner City," held on April 8, 1994, at the State University of New York, Health Science Center at Brooklyn.

Requests for reprints should be addressed to Colin Crawford, Brooklyn Law School, 250 Joralemon Street, Brooklyn, NY 11201. �9 1995 Human Sciences Press, Inc. 125

126 JOURNAL OF COMMUNITY HEALTH

tion that provides services to homeless, poor and handicapped children, both in the form of direct careaincluding residential and day care services to children and their famil iesaand in the form of advocacy efforts on behalf of children and their families, ABC become an aware of an alarming reality: infants and children with HIV are dying without the chance for a childhood. Of course, HIV is not yet a curable disease, but it is a treatable illness. This reality is needlessly being ignored in the treatment of HIV-positive infants and children.

Imagine the following situation: you are HIV-positive and you do no tmand cannotmknow your HIV-status. If you did, you could be treated to avoid the most life-threatening illnesses you are likely to suf- fer, thus prolonging your life for as long as a decade and perhaps many years after that.

Most of us, when faced with this situation, would presumably want to be tested for HIV, to begin the life-prolonging treatment. Yet for hundreds of the most vulnerable among us, this choice remains un- available. I refer, of course, to the large numbers of HIV-positive children born each year in this country, a number that is higher in New York State (and especially in the New York City metropolitan region) than any other state in the nation.

It is no exaggeration to say that the inability of infants and children to be aggressively tested and treated for HIV constitutes a scan- dalous derogation of obligations to protect the public health by those charged with administering state HIV testing, counseling and treatment programs. In analyzing the deplorable history of this state of affairs, in these remarks I will do three things. First, I will trace the recent efforts (largely by health and social service bureaucrats and special interests that do not represent or work with children) to resist efforts to have infants tested and treated for HIV. In this connection, I will document the fact that the current system of voluntary testing for pediatric HIV appears to have been an unmitigated failure to save and prolong the lives of hundreds of children in New York State. Second, I will suggest that the campaign against universal infant screening and treatment reflects our society's continuing, calculated decision to ignore the threat and dimensions of the HIV/AIDS epidemic. Third and finally, I will oudine a plan for a prompt and comprehensive system of HIV testing, counseling and treatment for infants and children, as well as for their parents and families, who are HIV-positive. In this connection, I will briefly discuss regulations to test children in foster care that promise to extend hundreds of lives.

In sum, my aim here is to suggest that by deliberately ignoring the moral and medical imperative of comprehensive unblinded pedi-

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atric H I V testing, along with t reatment for all pediatric HIV cases, we are tolerating the cont inued helplessness of the weakest link in our net- work of social relations and obligations. That we do so is a deeply troubling commenta ry on our collective goals and morality. In no small mea- sure, the concern we show for the wellbeing of our infants and chi ldren is a kind of test, a test of our ability to work together for our mutual benefit, and to insure a prosperous and healthy future for us all.

SOME CASE HISTORIES

Before going any further, it is useful to give a sense of the human cost o f the cont inued resistance of the health and social services bureaucracies and others to universal infant H I V screening and treatment. Take the case of Lili, who was born in early 1993, in New York City. Li l i - -which is not her real name- - i s now a client u n d e r ABC's care. Because her mother 's d rug use interfered with he r ability to take an active role in Lili's rearing, she was placed in foster c a r e u t h a t is, she became a ward o f the State of New Y o r k u s o o n after birth. Despite her mother 's d rug use, a likely indicator of possible H I V infection, Lili's positive HIV-status was not manifest until she contracted Pneumocystis carinii pneumonia (PCP) at five months. Although as I write these words, Lili has survived, she has not thrived. She has spent prolonged periods in the hospital, including weeks in pediatric intensive care; the experience has left her badly debilitated and under func t ion ing for her age?

Al though cases like Lili's are concentrated in the New York City area, they are by no means confined to our largest conurbation. T h e trials o f Marshall are not unusual. Marshall was born near Buffalo, New York in J u n e 1992, once again to a mother whose H I V status was un- known, but who had a history of intravenous d rug use. Like Lili, Mar- shall quickly en te red foster care. His severe developmental delays (he ranked in the lowest fifth percentile by all measures of infant health) suggested to the doctors and nurses at tending him that he had HIV. They were without authori ty to have him tested, however, a situation made worse as he was shifted f rom one foster care family to another . Meanwhile, his medical condition worsened, and the County Heal th Commiss ione r~whose approval was required for a health tes t - -unac- countably delayed.

ABC first identified Marshall in preparat ion of its September 1993 report , A Preventable Crisis, at which time we learned that approval to have Marshall tested for HIV was finally obtained when he was nearly nine months old and so emaciated that he could no longer sit up.


Marshall was then put on clinical HIV drug trials, and his health improved markedly, although his small size is a constant reminder of the developmental delays ("failure to thrive" to doctors) that unnecessarily plagued his earliest months. 2 Marshall now suffers from constant diar- rhea and his growth is poor. As a result of his condition, his care pro- viders now plan to put him on total preventive nutrition, or TPN. That is, they plan to feed this little boy intravenously.

The tragedy--and I do not use the term lightlymis that these cases, and hundreds like them, are absolutely unnecessary. This is particularly true in Lili's case, because PCP is now treatable in a safe and affordable manner for cases of pediatric HIV infection. The most fre- quently used therapy is application of the antibiotic commonly known as Bactrim. Marshall's health was, in fact, improved by the use of Bactrim. R.J. Simonds, Chief of the Pediatric and Family Studies Section at the U.S. Centers for Disease Control (CDC), who is in charge nationally of CDC's monitoring of the incidence of pediatric HIV, reported in a Sep- tember 1993 telephone interview that the most common antibiotic therapies (such as Bactrim) administered to HIV-positive infants cost just pennies an application.

The benefit of early intervention in cases of pediatric PCP is quite stark. PCP is the first sign of HIV-related illness in between 8% to 12% of children with HIV infection. Moreover, PCP is the first serious sign of AIDS-related illness for fully fifty percent of infants who de- velop AIDS in their first year. Mortality for children with PCP is high: the first episode is commonly fatal and the median survival time following a first bout with pediatric PCP is but one to four months. Moreover, PCP tends to strike early, in most cases between three to six months of age. s The seriousness of pediatric PCP was most recently recognized in the Report of the Subcommittee on Newborn HIV Screening of the New York State AIDS Advisory Council, which stated that, "[i]n general, about 10 percent of children with HIV infection die within one year of life, and fewer than 10 percent per year die subsequently. PCP is the most common serious opportunistic infection among children with HIV and is the primary cause of death for HIV-infected infants. ''4 Other commentators have noted that "children presenting with PCP tend to have the worst prognosis" of any "AIDS-defining condition. ''5

Why do these cases continue to occur? To put it simply, they continue to occur because the interests of HIV-positive infants and children continue to be lost in a tangle of bureaucratic and special political interests that have successfully confused the moral and medical concerns at stake in discussion of this issue. In the section that follows, I

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hope to begin untangling these interests and lay bare the problems in- herent in the current voluntary testing system.

T H E FAILURE OF V O L U N T A R Y T E S T I N G

Before outlining ABC's criticism of the current system of voluntary testing, I should be clear about the testing nomenclature. "Volun- tary testing" refers to the decision by parents or guardians to have post- partum HIV tests for themselves and their offspring, preferably with counseling and treatment, such as that provided by the DOH's Obstetri- cal Initiative. By contrast to such voluntary tests, since November 1987, New York has conducted universal, "blind" HIV seroprevalence tests for all live births, as do 43 other states. At birth, the test results are identified only by location and certain other demographic information. The actual identity of the child is not connected to the result, hence, the identity is "blinded. ''8 Ideally, blind results are thus not merely confidential, they are also anonymous.

Instead of either of these procedures, ABC and other advocates for children and their families favor universal, mandatory HIV testing, counseling and treatment for all HIV-positive newborns, a practice that would force un-blinding of test results. This is discussed in greater detail below.

Assuming that the goal of HIV testing programs is to identify, counsel and treat those with HIV, New York's system of voluntary testing appears to have been a complete and utter failure, a fact confirmed in data prepared by the New York State Department of Health (DOH). I say "appears to" because the data are imprecise and difficult to work with. They also quite likely undercount the number of children who are HIV-positive. For example, an unofficial CDC survey revealed that at least 50% of children diagnosed with PCP had not previously been identified as HIV-positive. CDC is now reviewing this unofficial survey and may issue a new Morbidity and Mortality Weekly Report (MMWR) analyzing this data. 7 Nonetheless, even using the data we have, it is possible to conclude with relative confidence that the voluntary testing system has been a failure.

For instance, in the three-month period ended March 31, 1992, 68 women in DOH-funded programs were identified as HIV-positive. For that same period, DOH registered 268 blinded newborn positive births? Assuming that not all of the women identified by DOH as HIV- positive gave birth during this three-month period, this means that,


since the seroprevalence survey began in November 1987, over 200 women carrying HIV antibodies were not identified immediately before they gave birth. Of course, some of the 200 women are likely already to have known their HIV status. For this same period, DOH reports that 62 women out of this 268 were aware of their HIV-positive status upon admission. It is unclear from the data the amount of overlap between these 62 and the 68 women identified as HIV-positive during the same period?

These statistics are troubling enough. What is even more troubling is that the same DOH figures confirm that mothers at risk of HIV infection are not getting tested. Between September 1, 1989 and June 30, 1992, only 24% of the women who received pre-test counseling in a New York State family planning project accepted HIV testing. For the eighteen months beginning January 1, 1991, the figures are about the same for women enrolled in one of the state's PCAP (prenatal counseling) clinics: approximately one-fourth of those women counseled agreed to be tested? ~p~

The figures were somewhat better in programs administered by hospitals in DOH's Obstetrical Initiative (OI). The OI produced a slightly better response rate, with a 41.1% overall testing rate, which is a median representing acceptance of testing rates from as low as 0.5% to as high as 88.3%. 8 However, of those tested in OI, "slightly fewer than half returned for their results after all follow-up, including 59.7% of the seropositive and 44.1% of the seronegative women. "8 In sum, "[a]mong hospitals participating in the [OI], minimally 43% of HIV positive childbearing women were identified through voluntary prenatal and post- partum counseling and testing activities. ''Stp'2~ These dismal statistics have been confirmed by other sources. One group of New York City doctors reported an 86% failure rate in voluntary HIV screening during pregnancy at New York's Bellevue Hospital? Another recorded a 35% rate overall of families who refused testing in a pediatric AIDS demonstration project at a New York inner city hospital. 1~ These worries were repeated by the dissenters to the February 1994 report of the Sub- committee on Newborn Screening of the AIDS Advisory Council. ~x

What is the import of these figures for understanding the problem of pediatric HIV and AIDS? In brief, these figures confirm that hundreds of children continue to be born each year who have HIV and who do not - -and whose parents or guardians do notmknow it. Al- though the rate of HIV-positive births is down somewhat in the most recent data, the rate of HIV seroprevalent newborns in New York State has since 1988 hovered around .6%, with no significant sign of improve-

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ment. (The figures are about twice that for New York City. From No- vember 30, 1987 through December 31, 1991, 7,568 HIV-positive newborns were born in New York State; in 1992, the figure was at least 1,691.) '~ What does this mean in terms of infected infants? From No- vember 30, 1987 through December 31, 1992, the New York DOH seroprevalence study reported 9,259 HIV-posidve births. "Preliminary data record an additional 1,074 women through August 1993. ''4~P8~ Using the conservative estimate that 20% of all newborns will not "sero- convert" and thus present with an authentic HIV-posidve result at 18 months, this means that at least 2,066 HIV-positive infants were born and their HIV results were blinded until such time as someone saw fit to have them voluntarily tested? ~p.6~ It is worth stressing that these figures err on the side of conservative estimates. It is estimated that in New York State each year, approximately 1,800 children are born with HIV- positive antibodies. Of these, 360 or more will not sero-convert and thus be truly HIV-positive each and every year.

In a world where but a quarter of the pregnant mothers at the highest risk of HIV infection agreed to be tested after being counseled, it thus seems not just likely but certain that large numbers of HIV- positive infants are going undetected in their first months of life, months that are absolutely crucial for administration of antibacterial and other therapies necessary to stop the onset of HIV-infected infant killers like PCP.

A C A S E S T U D Y I N F A I L U R E : T H E F O S T E R C A R E S I T U A T I O N

At the administrative level, this general recognition of the im- portance of pediatric HIV testing and treatment has not gone un- noticed in the past few years. Regulators at both the New York City and state levels have issued detailed procedures for pediatric HIV testing of children in their care, that is, for children in the foster care system-- children like Lili and Marshall.

These procedural requirements are significant because, although they deal only with children in the state's care, they provide models for possible comprehensive testing regimes. Examination of these procedures, however, reveals that they are as replete with illogical assump- tions and arbitrary distinctions, as are most arguments against the case for universal, unblinded testing, counseling and treatment. It is worth noting that neither of the directives outlining the procedures to be fol- lowed in conducting pediatric HIV testing appears to be an actual regu-


lation issued pursuant to some statutory authority. As will be described in greater detail below, the New York City Child Welfare Administra- tion issued only a bulletin, and the New York State Department of So- cial Services issued but an administrative directive.

N e w York City

The number of children in foster care identified as HIV-positive has grown dramatically since anonymous testing began in 1987. In that year, 79 children in foster care were identified as HIV-positive by the New York City Child Welfare Administration (CWA), which is charged, among other duties, with administering foster care programs in New York City. By June 1993, the last date for which figures are available, 618 children in foster care had been identified as HIV-positive. t~

Partly in response to these crisis numbers, in late 1993, CWA issued a bulletin for HIV testing of infants in foster care. Although the new CWA policy improved upon previous requirements by expanding the relevant list of HIV risk factors and tightening the requirements for testing, it failed--like DOH's recent statements on the issue--to go far enough to insure that our most vulnerable citizens' health and wellbeing is satisfactorily protected. To be specific, the CWA procedures require that children defined as at risk of HIV need be tested only within 30 days of coming into foster care. t4 As suggested by the statistics I cited above, however, 30 days can mean life or death for an HIV-positive infant who is likely to contract PCP within the first three to six months of life. In addition, the CWA bulletin arbitrarily capped these risk as- sessment requirements (and, if merited, subsequent testing) to children under two years of age, as if the risk of PCP and other AIDS-related opportunistic infections disappeared after a child's second birthday. It is worth adding, incidentally, that CWA ignored efforts by ABC (and perhaps other groups or individuals) to participate in public discussions about the drafting of these regulations, and ignored comments submit- ted to the agency. CWA never responded, for example, to comments from ABC that it had requested. The comments had been telecopied, as requested, to Carol Marcus, Esq., CWA's General Counsel? s

The failure of CWA's infant testing procedures is vividly illus- trated in unofficial data prepared by the agency at ABC's request. The data cover HIV testing of children in ABC's care at one of its facilities for the last quarter of 1993, that is, the first quarter during which the new administrative directive applied. For that period, approval was requested for 14 of our children. Approval was denied in one case by the

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adoptive parent. One test result was clinically unsatisfactory and had to be redone after the 30-day period. One child was given an appointment to be tested four months--or 120 daysmafter the approval date. Yet another child's test results were requested from the testing hospital, but had not been received over two months--more than 60 days--after the approval date.

That left 10 children who were approved and tested. Of these, five--fully 50%--were tested after the 30-day period. What is more, the test date is seldom the date that an agency such as ABC actually received the result, losing yet more precious time for HIV-positive infants. In short, what this sample (admittedly not a statistically conclusive one) reveals is that arbitrary distinctions like the 30-day rule, coupled with predictable administrative delays and medical error, leave defense- less HIV-positive children at greater risk of contracting an AIDS-related opportunistic infection.

N e w York State

Until very recently, state procedures concerning HIV testing of children in foster care were even less comprehensive and more poorly thought out than their New York City analogues. An administrative directive issued in 1991 by the New York State Department of Social Ser- vices (DSS) provided, for instance, that HIV testing was authorized for children in foster care on the advice of a physician and upon receipt of written informed consent from the child's parent or legal guardian, but only if the child was voluntarily put into custody. 16

If consent must be obtained from a parent or guardian who could not be located, a physician could order testing after a "reasonable effort" to locate the parent or guardian. In cases where a child was placed in protective custody (that is, non-voluntary custody) of DSS, au- thorization had to come from the local social services or health commissioner? 6 The DSS directive made no provision as to what constituted "reasonable effort" to locate a parent or guardian. Neither did it require consent to be obtained from the local social services or health commissioner within a defined period. This was exactly the situation that nearly led to the death of Marshall, the little boy upstate mentioned at the beginning of this paper. You will recall that his HIV-positive status was suspected but he could not be treated for his extreme failure to thrive because he was not tested for HIV due to administrative dithering and delays by the county health commissioner whose approval was required to test.


In short, the failure by local and state regulators to recognize the pressing need to treat HIV-positive children in foster care in a prompt and comprehensive fashion resulted in arbitrary and inconsistent administration of treatment for a serious medical condition. All of us are sure to agree that this is not a status quo we want to protect. I would again suggest, furthermore, that it reveals the abnegation of our collective obligation to protect and promote the interests of the weakest among us. By contrast, a regime of unblinded, universal testing, counseling and treatment, would have the advantage of eliminating inconsistent and arbitrary application of dudes to protect the public health and welfare.

Happily, for foster care chi ldren in New York State, this situation changed in the Fall of 1994. On September 2, 1994, DSS Commis- sioner Dowling issued emergency regulations requir ing testing of chil- d ren in foster care who demonst ra te any of a range of risk factors for HIV. T h e testing must be conducted within 30 days after a child enters foster care, up to the age of consent. Medical treatment is required when a child tests positive. It is hoped that these regulations will help extend the lives of many children.

I N E X P L I C A B L E S U P P O R T FOR A FAILED S T A T U S Q U O

In light of figures that reveal the extent to which cases like those of Lili and Marshall are depressingly common rather than regrettable aberra- tions, it is perplexing that health and social service bureaucrats continue to insist upon the failed regime of voluntary testing and counseling.

T h e most recent statement of support for this regime comes f rom the DOH, th rough the voice of the Subcommittee on Newborn Screening of its AIDS Advisory Council:

The Subcommittee was charged by the New York State AIDS Advi- sory Council to take a broad look at the issue rather than just narrowly focusing on whether New York State should institute mandatory HIV screening of newborns and their mothers. The Subcommittee was asked to assess the latest medical and scientific knowledge on clinical care and transmission, particularly via breastfeeding; to provide guid- ance on the best ways of identifying infants with HIV infection; and to determine the best means of getting infants, their mothers, and possi- bly other family members into treatment? ~pp.,.5~

Like most commentators on the subject, in February 1994 the Subcom- mittee on Newborn Screening agreed that early identification and treatment of HIV-positive infants and mothers is essential. ~ppt4-*9~ T h e Sub- commit tee also strongly endorsed the "routine" inclusion of HIV testing

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in medical care of pregnant women. Yet despite its recognition of this need, and its further acknowledgement that "[t]he failure to recognize HIV status and a lack of PCP prophylaxis are associated with an in- creased risk of early death among HIV-infected infants,"' (p.~5) the Sub- committee stopped short of advocating universal, unblinded infant HIV screening, coupled with counseling for parents and, most importantly, treatment programs for both infants and their parents." (p.2) This conclu- sion was criticized by dissenting members of the Subcommitteemall of them medical doctors (including Louis Z. Cooper, M.D., Keith Kra- sinski, M.D., Mark S. Rapoport, M.D., M.P.H., and Nancy Wade, M.D.). Specifically, the dissenters criticized recommendations emerging from a report "distorted by errors of omission, commission, logic and unlabeled speculation."

A H I S T O R Y OF E V A D I N G RESPONSIBILITY: R E M E M B E R I N G M O H U N K

Taken together, recent statements on the issue of pediatric HIV testing, counseling and treatment from DOH, along with state and local procedures concerning pediatric HIV testing and care, amount to a will- ful, consistent evasion of responsibility. Sadly, this evasion has a history that stretches back at least five years.

Indeed, it is fair to say that the 1994 Report of the Subcommit- tee on Newborn Screening was only the latest in a series of such pro- nouncements from DOH on the issue of infant testing and treatment. In 1991, the Director of DOH's Office of Public Health advised physicians that "[e]arly identification of potentially infected children is essential for optimal medical care. ''x7

In 1990, at a DOH-organized symposium in Mohunk, New York, a declaration of principles was articulated, providing that four conditions would have to be met before New York State implemented compulsory or involuntary newborn screening. What have come to be known as the Mohunk Principles "present a set of conditions that must be met before compulsory newborn HIV screening would be ethically responsible." These conditions provide as follows: (1) substantial clinical benefit of treatment in HIV-infected newborns must be demonstrated; (2) appropriate clinical services must be available to all HIV-infected family members regardless of family resources; (3) a definitive labora- tory test must become available allowing for the detection of HIV infection in newborns . . . or the indicated clinical intervention for infants with HIV infection has been proven sufficiently non-toxic to uninfected


infants who would receive it because of the presence of maternal antibodies; and (4) a system of voluntary counseling and testing of all women of reproductive age must have failed to be effective, x8

Clearly, (1)nthe clinical benefit of newborn HIV treatment--has been satisfied in light of PCP and other prophylaxes in recent years. The availability of this prophylaxis and new, affordable tests for infant HIV also satisfies requirement (3). (Affordable tests include one, as reported in The New England Journal of Medicine, that produces quick results and costs only about $80 each, as opposed to hundreds of dollars for comparably reliable, previous tests.) ~ As discussed above, the voluntary testing regime has proven a resounding failure, thus satisfying requirement (4).

This leaves only requirement (2)nthe provision of appropriate clinical services to all family members regardless of resources. As the recent Subcommittee Report notes, the population at greatest risk of maternal and infant HIV infection is also one of the worst-served populations in terms of access to medical and related social services. 4 r Elsewhere, the Report notes that in New York State as of December 31, 1993, "In]early 83% of women with AIDS are women of color: 52 percent are black and 30.6 percent are Hispanic. "4"2~ Yet--if one is to respect the Mohunk Princi- p les- tes t results cannot be unblinded until such services are in place.

Appropriate clinical services will not be put in place, of course, until funds are appropriated by the Legislature and DOH. Thus, the Mo- hunk Principles have created a Catch-22 that effectively allows DOH to argue against unblinding tests because funds are not available to treat HIV-infected children. In short, a lack of a willingness by both the execu- tive and legislative branches in both New York State and New York City to commit financial resources to HIV infant screening and treatment is one reason for the continued support of the voluntary testing regime.

The solutions to this dilemma proposed by the Newborn HIV Screening Subcommittee are unsatisfactory. For example, the Subcom- mittee commends the high counseling success rates achieved at Harlem Hospital? However, the creators and overseers of the Harlem Hospital program have suggested that its success cannot be replicated elsewhere with any certainty. Dr. Elaine Abrams, the remarkable, energetic director of Harlem's program, has observed that "[l]ike your grandmother's recipe, the chemistry at our site is very complicated.") ~1

CIVIL LIBERTIES C O N C E R N S

It would be trivializing, however, to suggest that the voluntary testing regime is adhered to only because it is cheaper than universal,

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unbl inded testing and treatment. One major reason often cited by opponents of unbl inded testing is the concern for a mother 's civil liberties.

These are real and serious concerns, as ABC has elsewhere recognized. ~*-'5's) However, excessive focus on parents', and specifically mothers ' civil liberties also, in ABC's view, neglects at least two other important concerns. First, the debate neglects discussion of the civil liberties concerns of children who cannot speak for themselves and who, it seems safe to assume, would choose to be tested if they could do so, in order to avoid the likely onset of pediatric HIV killers. Second, the focus on mothers ' civil liberties keeps the discussion of HIV and AIDS a social and political issue, rather than, as it should be, a medical one. ~ If, as a society, we do not begin to appreciate that HIV and AIDS are treatable illnesses, rather than shameful secrets, then we have learned nothing from the first 14 years of this ghastly epidemic. Recognizing that pediatric HIV is treatable is a right step in the necessary medicaliza- tion of HIV and AIDS. Providing comprehensive testing and treatment services for HIV-infected infants, their mothers and other family members who are HIV-positive is one crucial way to demonstrate to the larger society that HIV may be a chronic condition, but that it need not be a speedily executed death sentence.

Because these civil liberties concerns are important ones, it is worth examining some of the claimed legal interests at stake. The AIDS Advisory Council's Newborn Screening Subcommittee Report cites, for example, the possible threat to Equal Protection guarantees for all citizens under the Fifth and Fourteenth Amendments of the U.S. Constitu- tion. The Report suggests that "[s]ince neonatal HIV disproportionately affects minority communities, some have argued that mandatory HIV testing might be considered a de facto racial classification subject to strict scrutiny. ''4 ~P~6) In layperson's terms, this is to suggest that a reviewing court apply a "strict scrutiny" standard of review-- the highest level of judicial inquiry in cases of claimed Equal Protection violations. Al- though the Report does not say so, its authors thus imply that universal testing would constitute discrimination on the basis of race, because it would effectively and unfairly single out a particular group as being HIV-positive.

What the authors and other opponents of universal, unbl inded HIV testing, counseling and treatment do not explore, however, is the possibility that the Equal Protection violation might be found to occur in the absence of compulsory tests. That is, it might just as successfully be argued that a group of racial and ethnic minority children are the protected class under the Constitution, and that the denial of equal access


to t reatment for a serious and identifiable threat to their cont inued good health and wellbeing constitutes the Equal Protection violation.

The same sort of analysis could be made with respect to the Re- port's discussion of possible implications of the Americans with Disabil- ities Act of 1990 (ADA). 23 Although, once again, the Report is not conclusive as to the possible impact of the ADA, it notes that the ADA "specifically includes HIV infection as a disability and protects disabled persons against discrimination unless they present a direct threat to others. TM tP'~ Once more, the suggestion is that it might be discrimina- tory to test in an unbl inded fashion because the protected class presents no threat to the greater population. Yet again, the reverse scenario might be argued just as successfully. That is, one can just as easily char- acterize the discrimination in this context as the failure to treat those children with a disability that can be readily identified and treated.

The fact that these legal arguments can so easily be f ramed by partisans of ei ther position in this debate should direct all of us back to the central concern, namely the question of whether we will conclude that it is in all o f our interests to protect the health and wellbeing of the weakest among us. Not only is this a question of social morality in the largest sense, it also has more particular implications for legal and medical ethicists. T h e Subcommittee Report notes, for instance, that "benefi- cence (doing good for the patient) is an obligation of health care pro- viders, though de termining what is good for a minor is a parental r ight abrogated only unde r highly def ined circumstances. TM ~P~ What opponents to universal, unbl inded testing, counseling and t reatment consis- tently fail to explain is why the death of hundreds of infants because their HIV status was not detected early enough does not constitute a situation where the child's r ight to good health and a longer life merits overriding the usual practice of obtaining parental consent. Three years ago, when successful t reatment for pediatric PCP was not clearly demonstrated, or when IVIG was not widely available to prevent recurrent bacterial infections, or when AZT was not recognized as a therapy for improving neurological development, the balance may have been different. But it now tips decidedly in favor of universal testing and treatment.

Moreover, this shift may mean that by failing to support wide- spread testing, doctors are exposing themselves to possible malpractice claims. If a newborn could but does not receive t reatment for HIV and dies in infancy, how long will medical health care professionals be able to hide behind the claim that the death resulted from the parents ' deci-

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sion not to test, instead of their own failure to do good for the patient and treat the child? In Maine, one such "wrongful birth" malpractice claim against a physician is already making its way through the courts. ~4

A P R O M I S I N G SIGN

On June 8, 1994, New York State Commissioner of Social Ser- vices announced that New York State would take speedy action to draft regulations that will prolong and improve the quality of life for thou- sands of HIV-positive infants and children in New York State. Commis- sioner Dowling said that procedures would be implemented under the new regulations requiring that all children with demonstrable risk factors of HIV infection will be tested for HIV within 30 days or less of their entry into the foster care system. ~5 This constitutes a great step forward in that it is a recognition by the Commissioner and New York Governor Mario Cuomo, to whom he reports, that the health needs of this population must be served. Regulations were promulgated Septem- ber 2, 1994 and went into effect just over two months later. Timely testing is sure to prolong and improve the quality of the lives of thou- sands of children in foster care. Once identified, HIV-positive infants and children in foster care can begin to receive treatment immediately that will help them avoid the onset of pediatric AIDS killers like PCP. This new policy--which is now in effectmwill help children like Lili and Marshall, both mentioned at the beginning of this paper.

The commitment promptly to test infants and children in foster care is a noble one, and an encouraging start. But it is only a start. It is important to recognize that HIV-positive infants and children in foster care are but a fraction of the entire pediatric AIDS population. Heart- ened by Commissioner Dowling's decision, but recognizing that much more needs to be done for the general population, ABC is therefore advancing the following proposal.

P R O T E C T I N G T H E WEAKEST LINK: A P R O P O S A L

The needless early illness and death of scores of HIV-positive children has been tolerated too long. It is troubling to contemplate, furthermore, that as HIV transmission rates increase among heterosexualsfl 6 the incidence of pediatric HIV is also likely to increase. What ABC and

140 J O U R N A L OF COMMUNITY HEALTH

other advocates for children and their families therefore propose is simple. Our goal is to redirect the focus on pediatric HIV and AIDS services f rom the political to the medical realm. In the wake of proven, successful therapies for pediatric HIV, ABC advocates the immediate unbl inding o f all infant HIV test results. I f unbl inding the seroprevalence survey is impossible, we advocate immediate implementat ion of a simultaneous unbl inded but confidential HIV test for all newborns, and, where a test is confirmed positive, the mandatory provision o f HIV counseling, t reatment and medical monitor ing services for the infant and his or her mother, as well as any o the r family members who are HIV-positive. To do any less is to fail not only our most vulnerable, weakest citizens, but also to fail ourselves and our duty to act in our collective best interest.

The unblinding of pediatric HIV results should not, moreover, be viewed as removing the first chink in the armor of confidentiality, as some would claim. 2~ tp.,,s~ Instead, it should be viewed as a recognition of the fact that HIV is an enormously complex illness, and that treating different subpopulations affected by it requires a variegated response. This position is supported by recent evidence that the drug AZT "drastically reduces transmission of HIV" from mothers to newborns. AZT has not similarly demonstrated success in stopping other forms of HIV transmission. 27

In short, what ABC calls for is really very simple, straightfor- ward, and humane. It is a call for all o f us to recognize our mutual best interest in helping ourselves by acting swiftly to protect and help our children fight the destruction of HIV and AIDS.

REFERENCES

1. Buchenholz, G. HIV Babies Have Rights, Too. N YDaily News January 18, 1994. 2. Association to Benefit Children. A Preventable Crisis. September 29, 1995. 3. Centers f~r Disease C~ntr~. Guid~lincs f~r Pr~ph~a~ Against Pneum~cys~ Cannii Pneum~nia f~r

Children Infected with Human Immunodefwiency Virus, MMWR, 1991; 40:RR-2. 4. New York State DOH AIDS Institute. Report of tlw Subcommittee on Newborn HIV Screening of the

New York State AIDS Advisory Council February 10, 1994; p. 15. 5. Caldwell, MB, M.D., M.P.H. and Rogers, MF, M.D., Epidemiology of Pediatric HIV Infection,

in Edelson, PJ, M.D., (ed.) Childhood AIDS 1991, pp. 1 and 12. 6. Stine, GJ. Acquired hnmuno-Deficiency Syndrome: Biological, Medical, Social and Legal Is-

sues, 1993; p. 113. 7. Telephone interview with the CDC's Simonds, RJ, M.D.; February 11, 1994. 8. New York State DOH AIDS Institute. Testing of HIV Positive Women by NYSDOH-Funded

Programs, January 1, 1992mMarch 31, 1992, HIV Counseling and Testing of Childbearing Women: A Report of New York State Policy and Experience with a Statewide Post-Partum Program; January 1993.

9. Krasinski, K, Borkowsky, W, Bebenroth, D, Moore, T, Failure of Voluntary Testing for Hu- man Immunodeficiency Virus to Identify Infected Parturient Women in a High-Risk Popula- tion, NewEng.J. Med 1988; 318:185.

Col in Crawford 141

10. Bamji, M, M.D., HIV Testing Among Women and Children: Variables Associated with Accepting or Declining Testing; Lessons from an Inner City Hospital. Prepublication draft reprinted with per- mission and on file with author. No date.

11. Dissenting Comments on the January 31, 1994 Report of the Subcommittee on Newborn Screening to the AIDS Advisory Council February 4, 1994.

12. NYS DOH, AIDS in New York State Through 1992. Compare note 4. p. 15 (1993). 13. CWA Pediatric AIDS Unit data, published in June 1993. 14. Child Welfare Administration. CWA Bulletin No. 93-2: HIV Testing of Children m Foster Care.

September 13, 1993. 15. Comments of the Association to Benefit Children Regarding CWA Draft Bulletin: HIV Test-

ing of Children in Foster Care. May 28, 1993. (Comments on file with author.) 16. New York State Department of Social Services. Pub. No. 91-ADM-36, Administrative Directive

Regarding Foster Care and Adoption: H1V-Related Issues and Responsibilities p. 17. September 16, 1991.

17. Letter to New York Physicians from Randolph, L, M.D., Director, Office of Public Health, New York State Department of Health (June 1991). Compare note 2.

18. Memorandum from de Jung, T, Esq., Deputy Director of Policy, AIDS Institute, N.Y.S. DOH, to Crawford, C (for ABC); October 28, 1992; pp. 2-3, Materials on HIV Screening in Newborns.

19. Hilts PJ. Effective Test Is Developed to Find AIDS in Newborns. N Y Times, February 4, 1993. 20. See also Levine C and Dubler, NN. Uncertain Risks and Bitter Realities: The Reproductive

Choices of HIV-Infected Women, The Milbank Q. 1990; 68:321,338-342 (1990). 21. Hellman, P. Should it be a Crime to Treat This Baby for AIDS? N Y Magazine February 21,

1994, p. 31. See also Goldstein, R. Spare the Mother, Save the Child: The State is Considering a New Policy on HIV Testing That Promotes Prenatal Screening But Preserves Parental Con- sent. Village Voice, June 7, 1994, p. 24. Dissenting Comments, note 14, p. 3.

22. See generally, Closen M. et al., Politics, Pressure Groups and the Pandemic, in AIDS: Cases and Materials 177-262 (1989).

23. The Americans with Disabilities Act of 1990, Pub. L. No. 101-336, is principally codified at 42 U.S.C. Secs. 12101-12213.

24. Anastosopoulos v. Perakis, 644 A.2d 480 (Me. 1994). 25. Navarro, M. HIV Testing for Children in Foster Care: Albany Agency Head to Require

Evaluations. N Y Times June 7, 1994; p. B1. 26. Altman LK. AIDS Cases Increase Among Heterosexuals. N Y Times; March 11, 1994, p. AI2. 27. Airman, LK. In Major Finding, Drug Curbs H.I.V. Infection in Newborns, N Y Times; Febru-

ary 21, 1994; p. AI.

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