. "I HIV Testing and Perinatal Transmission: Thoughts from an HIV-Positive Mother." Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press, 1999.
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In my experience, many providers are still thinking in terms of high-risk groups rather than behaviors. The data presented today bear this out, in the number of women who were educated and counseled by their doctors, yet chose not to test because they did not perceive themselves to be at risk.
The majority of positive women I've talked to were told by a medical provider that they were not at risk, only to discover their infection when they became severely symptomatic. Most women accept their providers' assessment of risk. During the first seven years of my own infection, from 1983 to 1990, no medical provider ever brought up the subject of HIV or testing. Had I not gone to a test site (to support a friend who was afraid to get tested), I likely would not have been tested until I was pregnant. It frightens me to think that even then, I might have been discouraged from testing.
Voluntary Versus Mandatory Testing
Whenever I am around HIV-positive women and the issue of mandatory testing during pregnancy comes up, they usually say, "It should be mandatory." This should be explored further, however, because the average person does not distinguish between "universal" offering of ''voluntary" testing and "mandatory" testing.
I recently sat in a group with three HIV-positive mothers. One was diagnosed HIV-positive when her ex-husband died of AIDS, one was diagnosed when she and her baby were simultaneously hospitalized with PCP [Pneumocystis carinii pneumonia], and the third was diagnosed during her pregnancy upon the death of her first child due to a "mysterious" illness. All said they believed testing should be mandatory. When I asked these women if they would have accepted testing if it had been offered during pregnancy, all three said "yes." When I ask if they'd rather be invited or told to test, they say they'd rather be invited.
Positive women, whether pregnant or not, tell me they feel more comfortable when their doctor offers choices, listens, and responds to their questions and concerns, and respects their treatment choices. Likewise, those whose doctors tell them what to do without soliciting or acknowledging the patient's concerns, consistently tell me that they don't like going to the doctor and that they are afraid to tell (and don't tell) when they aren't following the treatment regimen prescribed.
Testing is not an end in itself. For testing to save lives, it must lead to care. My concern with mandatory testing is that it may lead the minority who don't want to be tested to avoid prenatal care altogether, while undermining the doctor–patient relationship for the majority who do want to know their status. If the majority of women are going to agree to be tested, isn't it better that the woman and doctor work together as a team? In my opinion, universal offering of voluntary testing is the best way to identify infected mothers and at-risk babies while enhancing the woman's trust in the medical provider and system.
It's interesting to note that many women with infected children have told me, "I'll always wonder if I'd been tested during pregnancy if my child would have AIDS now." Universally they say they would have taken AZT [azidothymidine;