Why Mandatory HIV Testing of Pregnant Women and Newborns Must Fail: A Legal, Historical, and Public Policy Analysis Special Issue: Mandatory HIV Testing of Newborns and Their Mothers (1996)

The debate surrounding mandatory HIV testing of newborns and pregnant women requires an understanding of the historical context of women in the epidemic. Although the epidemic first was recognized in gay men in 1981, anecdotal reports reveal that women already were dying from what seems to have been HIV-related symptomatology. Indeed, in Gena Corea's book, The Invisible Epidemic, we learn that, as early as 1981, not insignificant numbers of drug-using and former drug-using women were falling ill and not recovering from conditions that normally are not fatal, including bacterial pneumonia. Yet, because we did not necessarily expect these populations to be healthy or perhaps because our health care system is not structured to recognize such changes, or perhaps because, as Corea suggests, they were happening to "others,"6 these deaths passed virtually unnoticed. We failed early on to recognize that AIDS, as we later came to know the disease, could and would manifest in women. Consequently, we lost critical time in recognizing some of the symptoms that may accompany HIV disease in women and in developing research and prevention programs geared to the needs of women. Remarkably, the first natural history study of HIV disease in women was not commenced until 1992. Moreover, it was not until 1993 -after six years of research and advocacy, and ten years since AIDS first was reported in women-that the Centers for Disease Control and Prevention ("CDC") recognized that HIV-related symptoms specific to women existed. Because the CDC did not consider certain women-specific conditions to be HIV-related, a number of things were happening: (a) the CDC was not getting an accurate picture of the epidemic;' (b) women were not being properly diagnosed and, as a result, were getting H1V-related care late in their illness, if at all, and were dying far more quickly than other populations with HIV/AIDS;" (c) health care providers and institutions did not integrate their gynecologic care into their HIV clinics and did not integrate HIV-related care into their gynecologic care provision and, as a result, women got "underinclusive" health care, and further, the CDC got an even more skewed look at the epidemic;' 2 (d) the development of and access to clinical trials did not reflect the medical needs of women in the epidemic, be- cause trial development implicitly depended on the CDC's sanctioning of certain conditions as being HIV-related or AIDS- diagnosing; and (e) in our world of limited resources, access to many services and benefits were highly dependent on receiving an AIDS diagnosis; because it was largely women and low-income people who had not yet been recognized in the surveillance definition, these were the populations that also were disproportionately not receiving benefits critical to their survival. Furthermore, by failing to recognize the depth and breadth of the manifestation of HIV/AIDS in women, we also failed to understand the degree to which the epidemic would become a family disease. Even if only one person in a family unit were HIV-infected, the impact would be felt throughout. This is particularly true in single-parent households in which the mother is HIV-infected; demographically, this is not an unusual occurrence. Moreover, as approximately twenty-five percent of the offspring of HIV-infected women also will be HIV-infected, concerns are raised regarding school attendance, disclosure of serostatus, access to appropriate caregivers in case of parental disability or death, and a plethora of housing and government benefits issues.