Fighting To be Visible: National Women and Girls HIV/AIDS Awareness Day

Content From: Richard Wolitski, Ph.D., Director, Office of HIV/AIDS and Infectious Disease Policy, U.S. Department of Health and Human ServicesPublished: March 09, 20175 min read


Rich Wolitski - Headshot - no jacket not smiling - cropped June 2016
Dr. Richard Wolitski, Director, Office of HIV/AIDS and Infectious Disease Policy, HHS

As a guy who doesn’t really care that much about sports (to be honest, not at all), I was caught a little off guard by the sports-related theme of National Women and Girls HIV/AIDS Awareness Day that 10 women were among the first 290 cases of AIDS identified from June 1, 1981 to March 24, 1982. In 1983, CDC published the first report of women with AIDS who were most likely infected by their male sex partners. Subsequently, females with male sex partners who had AIDS were added to the list of high-risk groups.

Even though women with AIDS were identified in the first year of the epidemic, their presence was not widely acknowledged. In the years that followed, AIDS became increasingly identified with gay and bisexual men and (to a lesser extent) people who injected drugs, hemophiliacs, and those from Haiti. The relative invisibility of women with AIDS meant that their needs and experiences were too often ignored in research, the design and delivery of prevention messages and programs, and the provision of health care and support services.

The relative lack of attention to the unique needs and experiences of women also affected whether women with advanced HIV disease were considered to have AIDS. Opportunistic infections that were unique to women (or were more common among women) were not included in the early case definitions of AIDS. This prevented some women with advanced HIV disease from obtaining Social Security Disability Insurance and other benefits because they didn’t meet the existing AIDS case definition that was informed primarily by data based on men’s experiences of HIV-related illness.

I remember feeling a real shift on issues related to women and HIV in the early 1990s. That was when activists came together to demand that CDC expand the AIDS case definition to include the types of opportunistic infections that women experienced as their HIV infection progressed, their immune system weakened, and ultimately they died from HIV-related complications. The posters, ads, and images used by ACT UP and other advocates made the case for changing the case definition plainly and clearly: “Women don’t get AIDS. They just die from it.

As a result of legal action, demands from the activist community, input from experts, and leadership within the federal government, CDC revised the AIDS case definition in 1993 to include CD4 count, invasive cervical cancer, recurrent pneumonia, and tuberculosis. As a whole, these changes allowed more women and people who injected drugs to be appropriately diagnosed and to qualify for benefits and services that were restricted to people who had been diagnosed with AIDS.

We now clearly recognize the impact that HIV and AIDS have had on women and girls around the world and in the United States. In this country, women account for about one in four people living with HIV. Globally, about half of the people living with HIV are female.

We’ve made important progress in our fight against HIV in women and girls, both here in the U.S. and around the world. Efforts to expand HIV testing, prevention, care, and treatment among women, and in particular pregnant women, have led to significant reductions in new HIV infections and diagnoses, mother-to-child transmission, progression to AIDS, and AIDS-related deaths among women. We’ve made gains in these areas for women overall and within specific racial/ethnic groups, including Black and Latina women.

Yet every day, too many women and girls are infected with HIV and disparities persist. Too few women and girls know their HIV status, and only a small percentage of women who could benefit from PrEP are taking it. Too few women and girls who have been diagnosed with HIV see a healthcare provider regularly, are on HIV medications, and have achieved viral suppression. We know that HIV does not affect all women equally. Even though HIV cases have declined among women of all races and ethnicities, Black and Latina women still bear a greater burden of HIV infections compared with their white peers, and transwomen have much higher rates of infection compared with their cisgender sisters.

Despite the challenges that remain, we are clearly in a better place now when it comes to understanding and addressing the needs of women and girls who are at risk for, or living with, HIV. But there remains much room for improvement. As the theme for National Women and Girls HIV/AIDS Awareness Day says, “The Best Defense is a Good Offense.” To me, this means that all of us, including men and healthcare providers, must take an active role in drawing attention to and addressing the HIV-prevention, medical care, and treatment needs of women in national policies and programs. In addition, we must also ensure that women are able to obtain high-quality prevention, care, and treatment that is responsive to their needs at the local level.

This isn’t just a women’s issue; it’s an issue that all of us who care about ending HIV need to take on as well. We will not achieve our national goals and the vision of eliminating HIV if we do not recognize, listen to, and act on the perspectives, experiences, and needs of women and girls who are at risk for, or living with, HIV.

For additional information:

Website: National Women and Girls' HIV/AIDS Awareness Day

Fact sheet: Current Impact of HIV among Women in the United States

Website: PEPFAR Activities for Adolescent Girls and Women