The New Face of HIV

In the United States, HIV used to be known strictly as a gay man's disease. But today, heterosexual women account for more than one quarter of all new U.S. HIV and AIDS diagnoses, up from just 7 percent in 1985. The disease is appearing in women of all ages--from young teens to nursing-home residents--but most often among those of reproductive age. Yet, even as rates climb among women, health advocates say that many doctors still talk about HIV as if it's a male disease. Some fear that infected women, particularly those in monogomous relationships, may not be tested promptly, delaying diagnosis, because health practitioners view them as atypical patients.

"Even when women present with symptoms of HIV, or a history of symptoms or conditions seen in HIV, clinicians won't think to do HIV testing, and women don't ask for it," says Dr. Kathleen Squires, director of infectious diseases and environmental medicine at Thomas Jefferson University Hospital in Philadelphia.

Women who are diagnosed with HIV complain that doctors often don't discuss issues like pregnancy and contraception with them or go through the gender-specific side effects of some drugs. In a new survey of 700 women with HIV, conducted by Roper Public Affairs in collaboration with The Well Project (a nonprofit organization for women affected by HIV), more than half of those surveyed said their health provider never discussed how treatments for the disease affect women differently than men. Only a minority (43 percent) realized that they should discuss plans to have a baby with their doctor well before they got pregnant, to reduce health risks to themselves and their babies.

Dawn Averitt Bridge, an HIV-positive mother and board chairman of The Well Project, says many people, including clinicians, also have outdated notions about HIV and pregnancy. They assume that nothing's changed since the early days when women with HIV were encouraged to get sterilized, out of fear they'd pass on the infection during the birth process. "I have two little girls who are both HIV-negative," says Bridge, who was diagnosed in 1988. "But when I wanted to talk about getting pregnant, my clinician's response was, `Are you trying to give me an ulcer?' There's a lot of bias out there. People assume that you're being irresponsible if you get pregnant when you have HIV. I am astounded how many medical providers still have no idea how successful we are in preventing transmission of the virus to newborns with good planning."

During the early days of HIV, "we heard that an HIV positive woman had a 70 to 100 percent chance of infecting her baby," says Bridge. "It turns out, it was never that high. Even among untreated women, the rate was about one in four." Now, with aggressive treatment and good prenatal care, she adds, "the risk of transmission is down to less than 1 percent."

Still, Squires says many of the women she sees "assume they have ruined their chance of ever having children," so they don't bring it up. The resulting sense of loss only adds to their burden of living with HIV.