• Policies and advocacy efforts from the 1960s through the 1990s produced a confluence of the patients' right movement, community engagement models, and categorical funding streams that resulted in a public health environment far more sensitive to individual privacy rights, patient autonomy, special interests and particularized communities than the more traditional mandate of public health operating solely for a majoritarian ''public good."
  • Advocates for people affected by HIV/AIDS have consistently challenged the traditional public health roles of surveillance, resource distribution, and case finding—and particularly the consequences of these traditional policies and programs for disenfranchised populations—and in so doing have compelled "exceptionalist" policies regarding HIV/AIDS that differ in many important aspects from other communicable or sexually transmitted diseases (STDs). New York's newborn screening debate embodied the struggle between the traditional and the exceptionalist approaches.
  • As the issue of newborn surveillance evolved from an insular public health issue to one of political moment, who framed the issue and how the issue was framed became the two most important predictors of public opinion.
  • The locus of decision making shifted over the course of a decade, as did the arena in which debate was engaged. Once public health policy was being debated in a political arena (and particularly once it reached a certain crescendo), the ultimate decisions and considerations were more often related to their political consequences than to their health consequences. When the testing policy changed in 1996 and 1997 (first with "consented" testing and then with mandatory testing), this occurred primarily because of shifting political winds and not because of scientific sea changes.
  • 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. When the political debate was first engaged in 1993, there was scant evidence that mandatory testing would result in any decrease in perinatal transmission. Although there was a consensus regarding secondary prevention of Pneumocystis carinii pneumonia (PCP) among infants using penta-midine prophylactically, and the Centers for Disease Control and Prevention (CDC) had issued guidelines regarding HIV-positive mothers abstaining from breast-feeding (which might be delayed up to six weeks awaiting test results and follow-up), the medical and public health communities were divided on the absolute benefit of newborn testing as a means of reducing perinatal transmission. Even as the scientific landscape changed (particularly concerning the clear evidence


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