HIV Among Women in the United States

By Sarah Abrams

In 1992, when Malkia learned she had tested positive for HIV infection, she
thought there must have been a mistake. As a single, African American woman in her mid-30s who had just earned her college degree, she did not see herself as someone who fit into an "at risk" category. Although she'd had unprotected sex in the past, she was not an injection drug user. Yet now, engaged to a man with whom she had been practicing safe sex, she received this devastating news.

Like Malkia, many women are not fully aware of their risk for contracting HIV. Because so much of the news in the early years of the epidemic focused on gay men and injection drug users, the story of the steady rise in HIV infection among women has gone relatively unnoticed, even among many health care professionals.

But the picture for women - especially poor women of color - is grim. As the rate of HIV infection among formerly high-risk groups has either dropped or leveled out, the rate for women has climbed to new heights. Among women in the United States, HIV infection is increasing at a pace that is four times greater than that among men.

Between 1991 and 1995, the number of women in the United States who were diagnosed with AIDS increased by more than 63 percent. In nine cities, AIDS is the leading cause of death for women between the ages of 22 and 44. And African American and Latina women, who are often without resources or health insurance, are bearing the brunt of the epidemic. Compared with white women, African American women are 20 times more likely to contract AIDS, while Latinas are 7 times more likely.

Women at Risk
The conditions that fuel the HIV epidemic among women have multiple sources, researchers say. By focusing their attention on men at the start of the epidemic, health care providers often failed to recognize the symptoms of HIV infection in women, even when those symptoms -- such as weight loss and fatigue -- were the same as those used to diagnose the disease in men. And gynecological problems, now understood to be early indicators of HIV presence, were ignored.

Women's perceptions of themselves as not being at risk have been among the bigger obstacles to overcome in HIV-prevention efforts, says Debra Katz, an AIDS program coordinator with the Connecticut Department of Health's Stamford AIDS Program. "More women are currently being infected through heterosexual sex than drug use, yet they often don't understand that in many cases their risk is their partner. Women are not protecting themselves. They are not able to say, 'I need to protect myself.'"

A woman's anatomy makes her extremely susceptible to contracting sexually transmitted infections. Women are, in fact, about eight times more susceptible than men to contracting HIV during intercourse. To make matters worse, most women who contract HIV are poor and are much more likely to seek care in health clinics, gynecology offices, or emergency rooms -- health care settings that usually provide limited diagnostic services.

Unfortunately, says Katz, the focus of health care for women in the United States is related to women's reproductive functions with little attention given to their overall health care needs. "Gynecology is all but segregated from the rest of the medical profession," says Katz, "and infectious disease specialists are often not experienced in gynecological procedures and conditions."
Gynecologic problems -- such as vaginal candidiasis, human papillomavirus, cervical dysplasia, and pelvic inflammatory disease -- are often not seen as being possibly associated with HIV disease. "So many of us were misdiagnosed," says Belynda Dunn.

Dunn, who is HIV positive, manages African American education programs at Boston's AIDS Action Committee. "Women weren't considered at risk back in the early years of this epidemic, even though the medical profession must have known we would be affected. If gay men were having sex and getting this disease, what did they think we were doing? We were having sex and having babies."

Prevention and Treatment
Women who do seek treatment often encounter health care providers who are insensitive to their feelings of shame and guilt, says Dunn. "Whether you come back or not for treatment often depends upon how you've been treated the first time you try to access it. A woman with HIV is often ostracized by her community as a bad person. If a woman can get past that and is then treated like dirt by the medical profession, she may never come back for further treatment. The first thing many health care providers ask is, 'Are you an addict?' What difference does it make how you got infected? The thing that should matter is how can they help you and make your life better."

Until recently, few women have been recruited to participate in treatment trials and protocols designed to improve and lengthen the lives of people with HIV. As of 1992, less than 8 percent of the participants in national trials were women. According to Katz, researchers claimed there were not a sufficient number of female candidates to make studies that focused on them statistically significant. Researchers wanted to study uniform populations. In addition, they were afraid that study conditions could possibly harm a woman's reproductive capacity or a fetus during pregnancy.

Also, the fact that many HIV-infected women receive health care through public hospitals and clinics means that they are not made aware of clinical trials. According to the AIDS activist group ACT UP, women are still under-represented in clinical trials of experimental AIDS drugs in the United States.

Most prevention efforts aimed at women have been inadequate. Female-controlled contraception methods are rare, and few attempts have been made to develop new methods. Spermicides such as nonoxyl-9 are abrasive and can increase a woman's risk of infection. Latex condoms remain the most effective means of preventing infection, but many women do not use them because they fear their partner's reaction.

Some Progress, Some Concern
Since Malkia's diagnosis six years ago, new drugs have been developed and have become more available. She has seen many changes in her treatment regimen and in the regimens of women she considers far less fortunate than herself. Many of the women in the support group she joined to help her cope with her illness have died, but those who have survived feel they have reason to hope.

Yet there is still a long way to go, says Katz. And Dunn notes that setbacks are always a possibility. For example, she fears that welfare reform will reverse gains that have only recently been made.

"We're getting ready to see an 'epidemic within an epidemic,'" says Dunn. "How will these women who are without means provide for their families? They will depend upon men. And if a man is paying the rent, do you think a woman will demand that he use a condom even if she knows he is messing around with another woman?

"Former Surgeon General Joycelyn Elders once said that women are up against a bear. And when you're dancing with a bear, you don't get tired. You have to wait until the bear gets tired. You have to keep fighting with everything you've got."

- Sarah Abrams is publications manager at Harvard University's John F. Kennedy School of Government.