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1997. Program administrators at New York sites shared with the IOM committee their experiences with the first year of the mandatory testing program.
Programs inform pregnant patients during standard prenatal HIV counseling that their newborns will be tested for HIV. They nevertheless find their patients' retention to be erratic. At postpartum visits, many seem unaware of the law, either because they had forgotten or because they were not told at another site where they had received prenatal care. The information was devastating, especially for those women unaware of their HIV-positive status until newborn testing. Programs described women being so traumatized from the news that they were unable to cope. For some, it took months to agree to treatment for themselves, but they agreed to medication for their infants much sooner (see patient profiles).
Because of the seeming lack of widespread knowledge of newborn testing, programs did not find the newborn testing law to deter women from receiving prenatal care or from delivering in a hospital. They noted, however, the difficulty of drawing this conclusion because they have such limited, if any, contact with these women. Their patients did express concerns about a breach of confidentiality to agencies outside the health care system and about being intimidated in taking their medication. These women were concerned that if they declined therapy for themselves or their infant, even out of legitimate concerns over long-term effects, they might be coerced through the courts.
Tanya (a pseudonym) is an African-American women who describes herself as a former injection drug user (IDU) with four children. She learned of her HIV infection seven years ago when she was pregnant with her second child. Her first child had been removed from her custody as a consequence of her drug use. It took two to three months of active encouragement from a dedicated Bellevue Hospital nurse to convince her to be tested. She elected to be tested because of the nurse's assurances that she was not alone and could get help for herself and her baby. Tanya declared, "If it weren't for my nurse, I wouldn't have gotten tested."
Upon learning she was HIV-positive, she was reluctant to accept medication. She was afraid of the medication because she linked—mistakenly she now realizes—her brother's death from AIDS to his medication, rather than to the disease. Having been a former IDU, she also was fearful of the medication being addictive. She ultimately accepted medication, again after vigorous counseling, and has since given birth to two children who are uninfected. She takes a cynical view of IDUs and sees drug abuse treatment as a necessary prerequisite for HIV testing and treatment of IDUs. When she was under the influence of drugs, she claims to