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The faceless epidemic: Where are the women with HIV/AIDS?

Women need to be included for HIV/AIDs measures to effectively control this epidemic.

photo of woman with red aids-awareness ribbon pinned to jacket
A part of continuing awareness and advocacies for HIV is to include those who are not normally associated with HIV/AIDs: women.
REUTERS/Navesh Chitrakar

photo of article author
Melanie Nicol
The human immunodeficiency virus (HIV) has integrated itself into our culture in a way that arguably no other infectious disease has. In many ways, much of the success in the fight against HIV/AIDS for the past three and a half decades can be attributed to the cultural association of HIV/AIDS with the LGBTQ community. This community has provided an unparalleled support system and have been a relentless advocate for awareness and funding.

For many within and outside the LGBTQ community, HIV is now a chronic, manageable disease. A part of continuing awareness and advocacies for HIV is to include those who are not normally associated with HIV/AIDs: women.

Iconic people with HIV/AIDs who come to mind likely include Magic Johnson, Freddie Mercury, Rock Hudson and Charlie Sheen. I took an informal poll among some friends, family and colleagues, asking them to name one famous or well-recognized woman with HIV. From all my polling, Mimi, a character from “Rent,” was the only female that any of my acquaintances could name.

After a Google search of celebrities with HIV/AIDs, I had only found one additional name — Gia Carangi, who is credited with being the world’s first supermodel. Her life tragically ended at age 26 as a result of AIDS-related complications.

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One recognizable woman, out of more than 100 names online.

The epidemic’s demographics

Undoubtedly, the lack of a female face with HIV is partly due to the demographics of the epidemic. In the United States, women make up approximately 25 percent of the people living with HIV. Globally, the statistics are quite different; 52 percent of the people living with HIV are women. Similarly, approximately 50 percent of the new infections every year afflict women.

Perhaps the most sobering statistic: HIV/AIDS is the leading cause of death in women ages 15-44, their complete reproductive period. More women in this age group are dying from HIV/AIDS than heart disease, car accidents or cancer. This is largely driven by the epidemic in Sub-Saharan Africa, where young women are disproportionately affected, being two to three times more likely to be infected than young men in the same age group.

Women need to be included for HIV/AIDs measures to effectively control this epidemic.

Treatment or prevention interventions effective among men may not be as effective among women. There are many recognizable biologic differences such as the influence of hormones which can interact with antiviral medications, the physiologic changes during pregnancy that can alter both disease and drug response, and the differences in how effective drugs may be in preventing different routes of HIV transmission. These are just a few biological differences that affect HIV medication in men and women.

Different social pressures

In addition to biologic differences, women often face different social pressures that can affect their HIV treatment and prevention options. In parts of the world where the epidemic is most prevalent, women may not be empowered to negotiate safe sex practices. Social economic structures compromise their ability to effectively protect themselves from HIV infection.

Unlike their male counterparts, many women living with HIV also have to deal with the realities of mother-to-child transmission. Complications from the virus itself, as well as the medications, may affect not just themselves, but also their unborn child. These concerns do not just end with delivery. Many women do not have viable alternatives to breastfeeding, which causes concern for HIV positive mothers as breastmilk can pass the virus to an infant.

With all these factors affecting the transmission of HIV/AIDs in women, who make up 52 percent of people living with HIV/AIDs internationally, it is time for the science community to find medical and societal methods to help.

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Thirty articles pulled from PubMed at random describe clinical trials in HIV populations, which on average illustrated that women represented less than 30 percent of the enrollment in these trials. Being disproportionally represented in scientific trials minimizes the chance of developing methods and medicine that prevent transmission in women.

Although HIV in women is a nameless, faceless epidemic, it remains a significant threat to global health. To help continue effective research, education and methodology to reduce HIV/AIDs transmission, women need to be included in the conversation in finding HIV/AIDs solutions.

Melanie Nicol, PharmD, Ph.D., is an assistant professor at the University of Minnesota College of Pharmacy.


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