Montreal the previous summer had featured a number of promising studies suggesting the value of specific prophylactic therapies directed at infants, and the CDC was in the process of formulating new guidelines for PCP prophylaxis for infants and children that would be released in 1991. The efficacy of such treatment, as with antiretroviral therapy in adults, was dependent upon early detection of the viral infection. 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. As the data continued to show, though, women were not voluntarily stepping forward to be tested. In late 1990, Axelrod asked one of his key deputies to assemble a small team and draw up a plan for unblinding the newborn study. The plan was to include how notification would be made, how to bring women back for comprehensive care and treatment, and how to assure sufficient capacity at existing designated AIDS centers to care for the women and children. At first, the team considered an approach that involved giving each women the "right of refusal," but rejected that as having too many problems. It settled instead on a plan of mandatory newborn testing and notification, along with assured treatment for all who tested positive. The AIDS Institute's Rango continued to object to the approach.

In February 1991, Axelrod suffered an incapacitating stroke. Despite its advocates within the health department, the plan to unblind the newborn testing was shelved. "We had no commissioner," said one veteran public health official who favored the plan, "and no one with the political resources to pull it off."

Outside the health department, indeed outside the medical community, there was an increasing interest in revisiting the newborn testing issue. In mid-1991, Gretchen Buchenholz, executive director of the Association to Benefit Children (ABC), a New York City-based foster care agency, approached her legal counsel to lead a lobbying campaign to unblind the newborn screening study. After several cases in which foster children had gone undiagnosed with HIV infection despite their caregivers' interest in obtaining an HIV test for the infant, and which was attributed to the restrictiveness of the state's confidentiality statute in not allowing foster parents to order an HIV test without the natural parents' consent,2 the agency decided that the most effective strategy would be mandatory HIV screening of all newborns, with a guaranteed provision of care for all who tested

2  

This was actually an artifact of rule making by the local governmental child welfare agency and not the state statute, which in fact gave each local governmental child welfare agency the authority to test foster children without the natural parents' consent. The New York City Child Welfare Administration's policy was to require that every effort be made to acquire the natural parents' consent prior to testing the foster child.



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