25 Years of the Epidemic—The Impact of HIV/AIDS on Women

December 1st marks World AIDS Day, an important time to spotlight the HIV/AIDS epidemic and reflect on the immense and persistent challenges this disease has presented for the world. One such challenge is the devastating impact HIV is having on women, often during their most productive years of life. When the epidemic first emerged in the early 1980s, women accounted for a small proportion of cases. Now, 25 years after the first report of a mysterious illness among gay men in Los Angeles was issued, the epidemic is increasingly likely to have a woman’s face. HIV/AIDS is taking a growing toll on women in the U.S., particularly women of color, and women around the world.

Why does this matter? The reality is that any one of us may be affected by or become infected with HIV. Efforts to stem the tide of the HIV/AIDS epidemic in the U.S. and abroad will increasingly depend on how and to what extent its effect on women and girls is addressed. Importantly, women are playing a critical role in responding to this disease and have the potential to make a powerful impact on the course of the epidemic.

How many women are living with HIV/AIDS?

Women now account for almost half of the 37.2 million adults living with HIV/AIDS worldwide, or 17.7 million women. In the U.S., the impact on women has become more pronounced over time, although men continue to represent the majority of new HIV infections and cases of AIDS—the most advanced stage of HIV disease. The proportion of AIDS cases among women in the U.S. has more than tripled since the epidemic’s early days, rising from 8 percent in 1985 to 27 percent in 2005. Today, there are approximately 1.2 million people living with HIV/AIDS in the U.S, including more than 300,000 women.

What factors make women particularly vulnerable to HIV?

A combination of epidemiological, biological, social, and economic factors contributes to women’s vulnerability to HIV infection.

• There have been important shifts in how HIV is transmitted in the U.S. While HIV has always been spread primarily through sex, more and more cases of HIV are being transmitted heterosexually. Just 3 percent of AIDS diagnoses were attributable to heterosexual sex in 1985, but that proportion climbed to 31 percent by 2005.
• Heterosexual sex is responsible for more than 70 percent of new AIDS diagnoses among women in 2005. A little more than a quarter of women are infected through intravenous drug use in the U.S. These patterns are fairly consistent across most racial and ethnic groups in the country.
• Biologically, women are more prone to heterosexual transmission of HIV. Research has shown that the virus is more easily passed from men to women during sexual intercourse.
• Finally, there are complex socioeconomic and gender inequalities that can make women more vulnerable. These inequalities may affect, for example, a woman’s ability to refuse sex and negotiate condom use. These factors are more pronounced in the developing countries most affected by the epidemic and are further complicated by cultural norms, poor access to education and employment, and sexual violence.

What does the U.S. epidemic among women look like?

Among women in the U.S., the epidemic is hitting women of color hardest, particularly African American women. African American women now account for 67 percent of new AIDS cases among women, but only make up 12 percent of the entire U.S. female population. The AIDS case rate (AIDS cases per 100,000 population) among African American women is 24 times higher than the rate for White women. HIV is the leading cause of death for African American women ages 25-34.

Latinas and White women each represent 16 percent of new AIDS diagnoses among females, respectively, yet the AIDS case rate for Latinas is six times the rate for White women. The case rate for Native American and Alaskan Native women is 4.4 and it is 1.8 for Asian/Pacific Islander women.

Most women with AIDS were diagnosed between the ages of 25 and 44, indicating that many were likely infected with HIV at a relatively young age. The impact on teen girls is significant, as girls represent half of HIV cases reported among teens ages 13-19.

The impact of HIV/AIDS on women has not been the same across the country. New York has the highest number of women living with AIDS in the country, followed by Florida and California. But women in the District of Columbia have the highest AIDS case rate, topping the list at a rate nearly 12 times the national average. In general, the Northeast and the South are most affected by the epidemic.

The U.S. has achieved great success in preventing the passing of the virus from mothers to their babies. Still, a number of babies continue to become infected with HIV each year, the majority of which are among African Americans.

What challenges do women with HIV/AIDS face?

Women suffer from the same complications of HIV/AIDS that affect men. However, women may also face unique challenges due to how their bodies are affected, how they have to manage their illness given family and childcare responsibilities, and how they deal with the health care system. These include:

• Women with HIV are at increased risk for developing or contracting a range of conditions affecting their reproductive systems, including chronic vaginal yeast infections, pelvic inflammatory disease (PID), and cervical dysplasia and human papillomavirus (HPV), which can lead to cervical cancer.
• According to research examining people living with HIV/AIDS in care, women with HIV were disproportionately low-income, less educated, and unemployed, compared to men. This potentially affects their ability to access needed services.
• In addition, women with HIV in care were found less likely to be privately insured compared to men, yet much more likely to be covered by Medicaid, the nation’s health insurance program for low-income Americans and the largest source of public funding for AIDS care. Having health insurance, either public or private, improves access to care and is critically important to people living with HIV/AIDS given the complexity and expense of care and treatment. About a fifth of women and men in care were uninsured and likely to rely on public programs such as those funded by the Ryan White CARE Act that fill in the gaps in care.
• Some research has also shown that women do not get ideal levels of care compared to men. In a nationally representative study of people with HIV/AIDS in care, women were less likely to receive combination antiretroviral therapy—the standard of care for HIV—and more likely to be hospitalized and visit emergency rooms, indicating that they may not have received appropriate outpatient therapy. The reasons for the disparities between men and women are not well understood. However, there is evidence that women face greater barriers to care than men. Women with HIV were more likely than men to postpone care because they lacked transportation or were too sick to go to the doctor.
• Most women with HIV continue to have family responsibilities, including raising children, running a household, and caring for sick relatives, which may further complicate their ability to manage their own illness, including putting their own health needs behind those of others.

A look ahead—what can we expect?

The number of people, including women, living with HIV/AIDS in the U.S. is likely to increase, as a result of both new infections, and the fact that people are living longer with the disease.

Indeed, on the treatment front, advances in HIV treatment have made it possible for those living with the disease to live longer, better quality lives. However, these treatments are not a cure and, for some, there are barriers to being able to get this treatment. Improving access to treatment for women living with HIV/AIDS is therefore critically important.

But preventing new infections among women and girls in the first place is essential. While HIV prevention is complex and there is no magic bullet, there are several proven strategies that work. Research has shown that the most effective prevention programs are those that use a combination of strategies to reach populations at risk. These include behavior change, condom use, and HIV testing, among others. In addition, there are a number of new HIV prevention technologies that are in the late stages of clinical research which could be particularly beneficial for women, such as microbicides and cervical barriers.

Microbicides, topical chemical compounds for women to use prior to sex to prevent transmission of HIV, have garnered much attention. Microbicides are seen as a potential prevention tool on the research horizon, one that women will be able to control. The hope is that women will be able to use them without the knowledge of their partner or husband in cases where condom negotiation or sex refusal is difficult and potentially threatening to the woman. The science is promising; however, we are still likely years away from having a product on the market.

For now, we need to use the information, tools, and resources currently available to stem the epidemic’s impact on women. Given recent trends in the epidemic, thousands of women in the U.S. will become infected with HIV before the next World AIDS Day. As women, we have the potential to play a powerful role in keeping the spotlight on HIV/AIDS beyond December 1 st and in affecting the course of this epidemic in the coming years.