Some women who test positive never receive the news that they are infected, or receive the news many months into their pregnancies. In New York City, Newark, New Jersey, and San Antonio, committee members were told of women who test positive being lost to follow-up. This was of particular concern in managed care settings where hospital stays are abbreviated.

Finally, in San Antonio, committee members were told of situations where providers simply did not understand the nature of screening results or the need for retests to confirm ELISA results. As a result, women with positive ELISA tests were told they were definitely infected. In one case, a women asking for a retest was told, "The tests are accurate and there is no need for a retest."

Getting to High-Risk Specialty Providers

Even in some high-incidence areas, specialty providers are not available. In the entire East Bay of the San Francisco Bay area, for instance, there is no obstetrician or perinatologist specializing in the care of HIV-infected pregnant women. This includes high-incidence cities such as Oakland, Richmond, Berkeley, and Fremont. Women seeking specialty care must travel an hour across the bay to San Francisco. For women living in low-incidence and/or rural areas, the difficulty in reaching specialty care is even more pronounced. A Birmingham specialty clinic treats women from northern Alabama who travel four to five hours just to get their care.

Getting Appropriate Care from Non-Specialty Providers

The committee heard repeatedly about situations in which providers were not well informed about current care practices and therefore could not give HIV-infected women optimal or even adequate care during pregnancy. Keeping up with the latest therapies may be particularly problematic for primary care providers in low-incidence areas, or with low-incidence practices; however, the problem goes beyond these kinds of practices. Rebecca Denison from WORLD gave the following examples from women she has counseled (see Appendix I).

  • When "Kim" asked her doctor if he knew how to manage an HIV pregnancy he said, "Oh, yes. Don't worry. We use gloves during the delivery with everyone." This same doctor, who knew she was HIV-positive, asked her three times, "Now, tell me again why you're not planning to breast-feed?''
  • "Natalie" had an undetectable viral load on a combination of two drugs when she found out she was pregnant. An obstetrician with no experience with HIV told her to go off her drugs immediately because she was in her first trimester. Almost immediately her viral load went from undetectable to over 130,000 copies/mL.
  • "Kelly" tested positive at age 22, during a planned pregnancy. With an hour of her diagnosis she was told, "We can schedule the abortion today." It was

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