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."
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.
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).