She said, "This diagnosis caused me a great deal of pain and anguish. I considered suicide, I considered killing my baby and myself because I was just so upset that I was HIV-positive, my baby was HIV-positive, what was I going to do with this baby, we both were going to die, who was going to raise her if she wasn't positive and I was the only one positive. … My daughter has had two positive PCR (polymerase chain reaction) tests since birth. I am destroyed that I breast-fed and that I continued to expose my daughter to HIV through breast milk. … I am deeply disturbed and angry about the lack of information that I was given during my pregnancy. I know that if I had been well informed I would have made choices that were best for myself and my child."
Some participants questioned the cost-effectiveness of the New York legislation and asked how funds might better be spent on improving rates of voluntary testing among pregnant women. Dr. Birkhead noted that the incremental cost of newborn HIV testing is relatively low (about one dollar for each screening test) because HIV is only one of a panel of tests run on newborn blood samples collected for other purposes. The PCR follow-up test is more expensive ($50 to $100 each), but is only performed on about 1,000 out of 185,000 samples. These are the collective costs of identifying approximately 60 infants statewide whose mothers' HIV-positive status was unknown before delivery. Dr. Etzioni argued that programs to educate providers and pregnant women were likely to be more expensive than New York's newborn testing program, but the costs alone should not determine whether the approach is voluntary or mandatory.
Much of the discussion surrounded the importance of voluntary testing of pregnant women, with greater attention to the role of the provider. A number of participants felt that providers' disinclination to counsel and offer testing presented the greatest barrier to pregnant women's getting tested. The question was raised as to how to create the conditions in which providers are encouraged to test and promote testing to every pregnant woman. Participants suggested these elements to be essential: trust between provider and patient; continuity of care and repeated opportunities to discuss testing during pregnancy in the event the patient refuses; financing of counseling; and provider education. One program administrator at the workshop attributed her program's success with voluntary testing to the education and endorsement of the provider, who "… has been the fulcrum. The provider has been the motivating force at getting women to test … it required a lot of education on our part … for an extended period of time to sensitize providers. Once we did that, we have providers who actually signed on, some sooner, others later, but we eventually had them all sign on."
American Academy of Pediatrics (AAP). Provisional Committee on Pediatric AIDS. Perinatal human immunodeficiency virus test. Pediatrics 95:303–307, 1995.