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an HIV-positive mother and board chairman of The Well Project, says many people, including clinicians, also have outdated notions about HIV and pregnancy.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.
Advocates like Bridge and Squires are working to change those perceptions. At hospitals like Thomas Jefferson, Squires said, doctors are now taking a multidisciplinary approach to their female patients with HIV so that they get consistent and up-to-date information. "As part of the intake evaluation of any woman with HIV in her childbearing years, there should be a full discussion about the management of her reproductive potential, what her aspirations are and whether she needs to be on medication," Squires says.
While most women with a fresh diagnosis of HIV aren't planning to get pregnant anytime soon, Squires says, "those feeling often change over time." By bringing up the topic early and often, clinicians can increase the odds that their patients will make the necessary changes in their treatment regime to minimize the chances that they pass the infection on to their babies. For example, Squires says, most people with HIV don't start medication as soon as the diagnosis is made because there are risks as well as benefits to to each of the more than 20 different drug therapies now on the market. But a woman planning to get pregnant in the near future, would be wise "to consider starting therapy early to help control the viral replication," she says. "You want the viral load (the amount of HIV virus in the blood) to be as low as possible to decrease the risk of transmission."
Women also need to hear that many of the medications approved by the Food and Drug Administration for HIV "have specific guidelines and caveats for use in women," Squires says. Initially, all the drug research was done on men. But in recent years, more information has been surfacing about gender differences. For example, researchers have found that women are more likely than men to experience liver toxicity and rashes when taking the drug nevirapine. Squires says she now makes a point of going over all the drug options with women, and explaining gender-specific side effects, to help them make an informed choice. Women should also be told which HIV meds can lower the effectiveness of oral contraceptives. Usually, doctors will recommend that HIV-positive women use a second line of defense, such as condoms, which also reduce the chance of spreading the infection to their partners.
Perhaps most important, for women to manage HIV most effectively, Squires says, an early diagnosis is essential. That means making sure that clinicians test heterosexual women in monogomous relationships too. These days, she says, it's recommended that anyone having sex should be tested regularly. " [Many women] do not perceive themselves as being at risk because ... they are in monogamous, stable relationships, and they assume that they can tell if someone has HIV. They may not realize that it takes years for the symptoms to appear," she says. "I can't tell you how many women I care for are totally surprised that they have HIV."
That may change as both doctors and patients become more aware of the rising rates of HIV and AIDS in women.