There is an old Chinese proverb that says, “Women hold up half the sky”. In 2014, I’d add, “Except in HIV/AIDS policy, prevention, strategies and care.” Women are not, as many people like to say, the “new face of AIDS”. For over 32 years, women, especially black women and Latinas, have been infected with the HIV virus and many have transitioned to an AIDS diagnosis. But because of racism, sexism, socio-economic status, family responsibilities and the war against women’s reproductive health, many have been left behind.
Statistics from a 2010 Center for Disease Control and Prevention (CDC) report show that while there has been some decrease in new infections among women, they continue to be infected. “New HIV infections among women are primarily attributed to heterosexual contact (84% in 2010) or injection drug use (16% in 2010). Women accounted for 20% of estimated new HIV infections in 2010 and 24% of those living with HIV infection in 2009.” The CDC website contains a graphic on the page with its report, which states “Gay and bisexual men of all races are most severely affected by AIDS” – given that AIDS is the leading cause of death of young black women, it’s a shocking and insensitive statement by the leading government agency responsible for shaping HIV prevention strategy. Tragically it reflects a growing lack of concern about HIV-positive women and women affected by HIV/AIDS.
HIV-positive women and women affected by HIV/AIDS have been left behind in HIV/AIDS policy, prevention care and funding. The President’s 2010 National HIV/AIDS Strategy is silent regarding issues affecting women. Last week in the President’s 2015 budget, Ryan White Part D, one of the key sources of funding for programs for HIV-positive women and their families, was eliminated and folded into a broader category. A number of organizations in NYC and across the nation will lose their Ryan White Part D funds at a very critical time as the Affordable Care Act and Medicaid Redesign are changing the way women’s reproductive healthcare will be provided. Who will be left to help HIV-positive women navigate these changes?
As the CDC and pharmaceutical companies roll out promising new bio-medical prevention strategies, PrEP (pre-exposure prophylaxis, which has to be taken daily by the HIV-negative partner) and PeP (Post-exposure prophylaxis, often called the HIV “morning after” pill) women’s reproductive health is a mere footnote. In the recent “Partners” study, which demonstrates success of a PrEP drug, Truvada, in heterosexual and gay male couples where one partners is HIV-negative, women represented only 38% of the study participants. While there were some findings of lower efficacy in women, the researchers considered it statistically insignificant.
In contrast, the 2010 FEM-PrEP study, which was intended to measure the efficacy of PrEP for HIV-negative women, was stopped because the company monitoring the results determined that “it was highly unlikely that any protective effect of Truvada that might emerge would be enough to demonstrate a statistically significant benefit overall.” One of the reasons given was that HIV-negative women may be less adherent because of side effects, which include nausea and “an unexpected” drug interaction with women’s contraception which led to lower levels of hormones and less protection against unwanted pregnancy.
These findings are very disturbing when you consider that women often cannot negotiate “safer sex” for a whole host of reasons, like intimate partner violence, trauma, poverty, homelessness, survival sex and lack of access to condoms. Even in the Partners study many women reported longer periods of “condomless sex” than their male counterparts — 3.5 years as compared with the 2.5 years reported by heterosexual men and 1.5 years by the gay men in the study.
Women living with HIV/AIDS and women affected by AIDS are an endangered group. Without polices, prevention strategies and care that focus on the unique needs of women including their biochemistry, reproductive health, emotional well-being, family and partner status, geography, and socio-economic status, the HIV/AIDS epidemic will continue to be severe for them and their families. Isn’t it time for national HIV/AIDS policy, care and funding to recognize that women must be counted and heard?
Bailey House will continue to be in the vanguard of advocating for HIV-positive women and women affected by HIV/AIDS as a member of the steering committee of the “30 for 30” campaign. Together with HIV-positive women activists from around the nation as well as many organizations that serve women, we will fight to get and keep women on the national HIV/AIDS agenda and in national healthcare policy. We won’t stop until policy and practice acknowledge the unique needs of women and begin to count them in. If, as the Chinese proverb says, “women hold up half the sky,” then the sky will fall without us.