health, but you can't bill for it." There needs to be a mechanism for reimbursing the cost of HIV education and testing, with protections to avoid coercion. And there needs to be widespread dissemination of educational materials for providers and their patients. Toward this end, the flip chart and materials presented today from California are very helpful.

Like It or Not, Everything Is Political

Health care is political. This could be a paper in itself, so let me just say that threatening to turn HIV-documented women who seek health care in to the Immigration and Naturalization Service, or to deny them prenatal care, can't possibly be in the best interest of the baby that will be born a U.S. citizen (and thus our responsibility).

Trust Is the Foundation on Which All Else Is Built or Collapses

When we look at data, slides, and numbers, it is easy to lose track of factors that are difficult to measure. In my experience, trust between a patient and provider is the most important element. With it, all things are possible. Without it, the patient probably won't even get prenatal care, let alone engage in other health interventions. Whether a woman's fears (of being judged, of having her child taken away, of her confidentiality being violated) are true or false is irrelevant; until proven otherwise, her fears are 100 percent real to her.

In many communities there is a great distrust of AZT. I have heard of providers who respond to a patient's fear by saying, "OK, then, we'll give you ZDV or retrovir instead." These are, of course, all the same drug. When the patients discover what's happened, trust is undermined.

I went eagerly to every prenatal appointment, despite tremendous inconvenience and having to travel from another city, because of my trust in my providers, and because of the respect I felt from them. Rather than treat me as a potential vector or threat to my unborn child, they treated me as a woman with the power to protect my child. In contrast, when "Angela" became pregnant, she told me she was afraid to seek prenatal care because the doctor in the clinic who cares for her HIV-infected child had told her she'd better not get pregnant again. He meant well, but her fear of being judged or criticized by him led to a dangerous situation for her unborn child.

When I couldn't get any babies to take Septra, despite all kinds of tricks including hiding it in formula during 2 a.m. feedings, I told my providers. At BAPAC they were disappointed, but continued to work with me, and talked to me about symptoms that should prompt an immediate call. In contrast, my regular pediatrician treated me like a bad person, and refused to answer my questions or discuss my concerns. When I eventually got my children's files (it took over two



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement