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Women and AIDS at Twenty

August 2001

AIDS, first reported in women in 1981, has decidedly become a major concern for women and girls. Early misconceptions about women's perceived lack of HIV risk and the characterization of AIDS as a disease primarily affecting gay men thwarted attention afforded to women's issues early in the epidemic. Today, women account for 32% of new HIV diagnoses in the United States. Globally, women make up more than half of those infected with HIV/AIDS. As women shoulder an increasing burden of HIV, research, medical and activist responses to women's issues increase. And while more is known about and being done about women and HIV today, basic questions and gaps remain.

Access to Care

Basic disparities in women's ability to access quality healthcare persist. Poverty and lack of insurance are among the biggest barriers, but competing needs faced by women, such as work and family responsibilities, also limit access to care. Also, studies show that the healthcare system short-changes women by not providing equitable treatment and care compared to similarly insured men with the same disease severity.

That said, model programs in several cities show the benefit of women-centered care that responds to the competing life and health demands in women's lives by coordinating HIV care, GYN care, pediatric care, psycho-social and childcare services. While women-centered care remains the exception and not the rule, these integrated programs help women seek healthcare for themselves and their families and ultimately live healthier lives.

Women and Research

Many of the barriers that women face in accessing healthcare also affect their ability to participate in studies. Enrolling enough women in studies to assess sex differences in disease progression, side effects and response to anti-HIV therapy is a continuing struggle and concern. Studies designed just for HIV-positive and at-risk women -- such as the Women's Interagency HIV Study (WIHS) -- concur that women-centered studies, like women-centered care, facilitates participation. Community advocates play a critical role in advising study design that facilitates women's involvement as well as asks questions pertinent to women. Largely because of the role community advocates have played, studies are increasingly developed to detect sex differences (and racial and ethnic differences), and more studies are underway that focus on women-specific diseases and responses to therapy.


Biological Differences

Early on, it was noted that women appeared to progress to AIDS and die faster than men. This difference has largely been explained by women's unequal access of care and treatment. In fact, progression and survival rates in equally treated and cared for men and women appear the same.

However, studies showing sex differences in viral load and CD4+ cell counts continue to emerge. The cause and significance of these differences remain unclear, and it's important to note that not all studies have seen sex differences in these measures. Looking at the aggregate of these studies, perhaps the best that can be concluded is that more information is needed to see if these differences really exist, and if they do what the implications might be on treatment and care of women.

One proposed explanation for these differences is the role of female hormones. Studies so far have suggested possible connections between estrogen and viral load differences seen between men and women. Also under consideration is the effect of female hormones on either increasing or decreasing CD4+ cell count; and an effect of HIV disease progression on hormone levels and menstrual irregularities. Several anti-HIV therapies interfere with the metabolism of oral contraceptives, suggesting a possible interplay between anti-HIV therapies and naturally produced hormones. For now, these are just theories and it will take more research to determine whether, and to what degree, these factors are responsible for observed differences on lab tests.

Women-specific manifestations of HIV infection, specifically GYN complications, were noted fairly early on in the epidemic. In 1993, the definition of AIDS was modified to include cervical cancer as an AIDS-defining condition. Studies continue to show that positive women have a higher incidence of cervical cancer than negative women, but improved screening methods and anti-HIV therapy have reduced progression of cervical abnormalities somewhat. Rates of other HIV-related illnesses are similar in men and women.


Most studies show that anti-HIV therapy is equally effective in men and women. A few suggest that women have greater increases in CD4+ cell counts, though less dramatic decreases in viral load, when treated with potent therapy. While women appear to equally benefit from therapy, women have greater and more frequent drug side effects. This may be due to an interaction between the anti-HIV drugs and female hormones and/or due to the fact that women generally weigh less than men but are given the same dose. In some studies, this has led to women changing their regimens more frequently than men.

Women may also experience different forms of body shape changes than men and, in some studies, more frequent laboratory abnormalities (like hyperglycemia) while taking anti-HIV therapy. It is difficult to say for certain whether these effects are directly related to specific medications or other factors, like age or stage of disease.

There are many potential reasons for differences in drug side effects, including body size, hormones, metabolism and other factors. Unfortunately, the number of women enrolled in studies is small, hindering the ability to detect sex differences in response to therapy and side effects. It also hinders the ability to determine the potential causes of differences when they are shown to exist. Effort to expand women's participation in studies must be prioritized in order to better understand this.


In the US and parts of Europe, great strides have been made to all but eliminate the transmission of HIV from mother to child. Some studies have shown risk of transmission as low as three percent with anti-HIV therapy and elective C-section. Short course and single dose anti-HIV therapy holds promise for reduced transmission risk in resource poor countries as well.

Given these incredible successes, it is shocking that we still lack an effective, widely available, truly female-controlled HIV/STD prevention method. Initial hopes of the female condom providing this have been tempered by the reality that it still requires partner participation. Another method giving women the power to protect themselves and their partners from HIV and other STDs is long overdue.


Over the past 20 years, the numbers of women becoming infected with HIV has continually increased. In the past decade, our knowledge regarding women and HIV has greatly improved. There are still countless questions to be answered, particularly about sex differences that may affect disease progression and the toxicity of anti-HIV drugs. Research and healthcare settings must be enhanced to respond to the needs of women. As always, women living with HIV and other community advocates play a critical role in this process and must be supported in this effort.

Back to the Project Inform Perspective August 2001 contents page.

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This article was provided by Project Inform. It is a part of the publication Project Inform Perspective. Visit Project Inform's website to find out more about their activities, publications and services.
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