Reducing the Odds Preventing Perinatal Transmission of HIV in the United States (1999) / Chapter Skim
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L Passing the Test: New York's Newborn HIV Testing Policy, 1987-1997
L Passing the Test: New York's Newborn HIV Testing Policy, 1987-1997
Pages 313-340
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From page 313... ...
This particular case of newborn screening policy in New York offers insights into the state's broader politics and policy making surrounding HIV/AIDS. Several of the key lessons include the following: 313
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From page 314... ...
· As originally conceived, the state's newborn screening program addressed "public health uncertainty" about the epidemiology of HIV, but could not resolve the "medical uncertainty" of a clinician unaware of a patient's status, and therefore reinforced the divide between the population orientation of the state and the patient orientation of the clinician. · Although New York's initial newborn testing policy revolved around surveillance and its epidemiological utility for charting the epidemic and for program planning, the legislative battle focused on newborn testing for the purposes of case finding.
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From page 315... ...
, the Democratic-controlled Assembly faced increasing political pressure to conform to the governor's wishes for a mandatory newborn testing program. In 1996, after quiet negotiations between several key legislative players, the New York State Assembly speaker reversed his three-year opposition to mandatory testing and helped pass the "Baby AIDS" bill.
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From page 316... ...
Whether the state was interested in HIV surveillance or case finding, the birth of a baby appeared to provide a perfect opportunity. THE PUBLIC HEALTH ENVIRONMENT, 1980-1986 New York's city and state health departments confronted a number of sensi live issues in the first few years of the AIDS epidemic: the regulation of sexual behavior in commercial bathhouses, clean needle exchanges for injection drug users, and the development of voluntary HIV testing programs, among others.
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From page 317... ...
Although public health officials did not universally endorse a voluntary HIV testing program initially (it was, in fact, opposed initially by the city health commissioner) , by the end of 1985 most health officials acknowledged the test' s utility for preventing transmission of the virus.
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From page 318... ...
The first state in the nation to conduct such surveillance, Massachusetts had capitalized on its newborn screening program for genetic and metabolic disorders in order to test for the presence or absence of maternal HIV antibodies in a baby' s blood. Two high-ranking New York public health officials, Lloyd Novick, the director of the Center for Community Health (which oversaw both the epidemiology unit and the AIDS Institute at the time)
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From page 319... ...
In addition to the planned newborn serosurvey, New York public health officials were also designing serosurveys that provided epidemological data among population "windows" for whom blood was routinely collected drug users, state prisoners, runaways and homeless teens referred to medical examinations, and family planning and STD clients, in addition to newborns. The decision to launch the blinded newborn seroprevalence survey and related serosurveys rested with these four public health officials, and principally with Health Commissioner Axelrod.
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From page 320... ...
Within four weeks of starting the newborn seroprevalence study, the state health department had amended the contracts of state-regulated family planning programs and prenatal care clinics, which served over 300,000 women annually, requiring them to provide on-site HIV counseling and testing services. The state also stepped up its efforts to reach pregnant women in high-risk neighborhoods through its Community Health Worker program and through targeted education campaigns, and advised obstetricians and other physicians throughout the state of the compelling need to provide HIV counseling and testing services to women of reproductive age.
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From page 321... ...
, the newborn seroprevalence survey provided the state health department with three critical elements: currency, relevance, and focus. The "currency" allowed the state to monitor the realtime spread of the infection without having to account for the lag time between HIV infection and a reported AIDS case (and it enabled the state to conduct analyses of HIV trends over time without adjusting for the CDC's expanded definition of AIDS in 1993~; the "relevance" of the universal screening test enabled the state to report actual, rather than projected, infection rates among childbearing women and to closely estimate the rate among all women ages 1544; and the "focus" derived from the small-area planning that could be conducted given the sociodemographic variables of maternal age, race/ethnicity, and zip code.
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From page 322... ...
Furthermore, such an approach followed the principle of the "least restrictive alternative" in gauging appropriate public health action.1 Particularly given some of the early successes in persuading the homosexual male population to voluntarily reduce risky behaviors, it seemed sensible to public health officials and legislators to pursue measures that educated and engaged the communities most at risk, rather than potentially alienating these communities and driving them away from the health care system. In keeping with this approach, the state legislature passed New York State's confidentiality statute in 1988, which imposed strict penalties for disclosure of confidential HIV information and required written informed consent prior to any HIV testing.
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From page 323... ...
The document further clarified a consensus position opposing mandatory newborn screening, arguing that involuntary testing of the mother (the practical consequence of newborn testing) must be weighed against the state's interest in safeguarding the health and welfare of the infant.
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From page 324... ...
Although the merits of case finding versus prevention were debated, it was increasingly evident to public health officials in the early 1990s that such voluntary case finding strategies needed strengthening. At the same time that these programs directed at individual behavior change were being initiated, a number of efforts were undertaken by the state health department to more accurately focus community-wide prevention and treatment efforts.
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From page 325... ...
Axelrod convened his chief deputies and discussed the possibility of replacing the blinded newborn screening program with one in which newborns carrying the HIV antibody would be mandatorily identified and a parent notified. Nick Rango, director of the AIDS Institute, was vehemently opposed and urged Axelrod instead to redouble his efforts on the voluntary testing program.
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From page 326... ...
Several days later, Newsday columnist Bob Wiemer endorsed the board's push for mandatory HIV testing. He referred to the 1988 confidentiality statute that stood in the way of such mandatory testing as "criminally foolish," and argued that under the existing laws, "the rights of the carrier are held superior to the rights of the uninfected." Although the Nassau County Board of Health's recommendations did not alter state policy, they did demonstrate a breach within the public health community.
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From page 327... ...
Notwithstanding the inaccuracies of such a portrayal the state did not maintain the identities of the HIV-infected babies, nor was it preventing or denying the ability of mothers to test or physicians to strongly counsel their patients to test this captured Mayersohn's attention completely. After verifying the facts of the blinded newborn screening policy, she decided to shelve her partner notification legislation and devote all her legislative energy towards the passage of the "Baby AIDS" bill she introduced in May 1993, which would unblind newborn screening and mandatorily notify the parents of the baby's status.
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From page 328... ...
Both state houses operate under protocols of centralized leadership: the Assembly speaker and the Senate majority leader each have the power to move legislation out of committee for a floor vote or to block votes from coming up the floor. Until procedural reforms were enacted in the 1998 legislative session, the legislative leaders also controlled budgetary decisions; the state budget was determined by negotiation among the Assembly speaker, the Senate majority leader, and the governor.
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From page 329... ...
increasing the rate at which infected and exposed women and infants could be expected to enter treatment. Given that HIV testing during the prenatal period provided greater opportunities for counseling and informing mothers, avoided the possibility of losing as many cases to follow-up if HIV test results were delayed postpartum, and offered the greater opportunity for preventing perinatal transmission if the ZDV clinical trial proved successful, a majority of the panel rejected the mandatory newborn testing policy and instead recommended mandatory HIV counseling for all pregnant and postpartum women.
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From page 330... ...
One compromise being considered was directed counseling that urged HIV testing and the written acceptance or refusal of testing at delivery. At the same time, the foster-care agency ABC had renewed its advocacy for allowing HIV testing of foster children without explicit consent of the birth parents, a policy that many saw as linked with the mandatory newborn testing proposals because both would amend the state's confidentiality statute and both would be undertaken on behalf of HIV-infected children.
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From page 331... ...
But winning their trust and cooperation, not coercing and blindsiding them, is how real change will occur." The results of ACTG 076 had changed the terms of the debate for a number of individuals and organizations. Both the New York chapter of the American Academy of Pediatrics and the Medical Society of the State of New York reversed their positions on mandatory testing, favoring instead a policy of mandatory counseling for pregnant women and voluntary testing.
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From page 332... ...
In mid-March, ABC sued the governor on behalf of "Baby Girl" seeking routine HIV testing for all newborns, and treatment and counseling for all HIV-positive infants, mothers, and other family members. Mayersohn had encouraged the lawsuit, since she felt it would help advance the cause of mandatory testing.
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From page 333... ...
According to one senior New York public health official, the state health department decided to continue its program of newborn surveillance without the $500,000 provided by the CDC. "After Mayersohn began agitating," the official noted, sharply contrasting the state response to that of the federal public health agency, "it would not have been politically astute to pull it." After Mayersohn and Velella reintroduced their mandatory testing bills, there was again a great deal of movement to strike a compromise before the end of the legislative session in early July.
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From page 334... ...
Women could refuse notification of results, in which case the screening would remain anonymous and be used for epidemiologic purposes only. If a woman in the newborn setting did not provide written consent or refusal, her physician could act in the absence of parental consent "when a medical emergency exists for the infant." According to state health department officials, over the nine-month period of the Consented Newborn HIV Testing Program, this emergency provision was exercised only four times in two cases the babies had been separated from their mothers, and in one case the mother was comatose.
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From page 335... ...
The new law gave the health commissioner the authority to impose newborn HIV tests. According to Speaker Silver, "We're leaving it to the health professionals to make the determination." As expected, Health Commissioner Barbara DeBuono issued a call for developing regulations to put the mandatory newborn HIV screening program into place, and on February 1, 1997, the Comprehensive Newborn Testing Program was implemented.
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From page 336... ...
Mayersohn herself has continued to support her agenda on a national scale, through a growing electronic network that includes contacts in Delaware, a medical society in California, congressional staff, an Indiana-based children's publisher, and a number of physicians who treat HIV-positive patients. The state health department's AIDS Institute is no longer entrenched in the HIV policy arena, as it was under Axelrod and, particularly, Rango's direction.
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From page 337... ...
Politics & policy Ryan White Act: Includes Mandatory Newborn HIV Testing, May 1, 1996. [www document]
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From page 338... ...
The ethics of mandatory HIV testing in newborns. Journal of Clinical Ethics 7(1)
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From page 339... ...
Maternal-pediatric HIV prevention and care program: HIV counseling and voluntary testing of pregnant women; routine HIV testing of newborns as part of the Comprehensive Newborn Testing Program. Memorandum 97-2, Jan.
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From page 340... ...
HIV testing project draws complaints. NY Times, June 16, 1997.
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