In 1988, when Dawn Averitt was diagnosed with HIV, her doctor told her to keep it a secret. Instead, a few years later, she did the opposite.
In a time when announcing your HIV status was sure to bring stigma and shame, Averitt came out publicly as HIV-positive—announcing her status so that she could more effectively advocate for women living with HIV at tables dominated by gay men.
An HIV activist since the early 1990s, Averitt went on to found women-serving organizations including WISE (Women’s Information Service and Exchange) and the popular online site The Well Project, advocate for women’s rightful inclusion in HIV medication studies, and serve on high-profile advisory committees including the Presidential Advisory Council on HIV/AIDS (PACHA) during the Obama Administration.
She’s satisfied with the life she’s led and the initiatives she’s pushed for over the years for women living with HIV. In June, she will celebrate 30 years of living with HIV with her partner and three children—surviving the “100% fatal” disease that was described to her in 1988.
“It’s abundantly clear to me that my liberation came when I was able to completely take back the power of HIV by just being public. But, I had no way of knowing that until it happened,” she said.
Averitt said she was lucky that her mother and father were with her when she learned her HIV status She was never burdened with the responsibility of when, where, how—or if—she should reveal her status to her parents, and her parents didn’t blame or shun her because of it.
“In the ‘80s and ‘90s, most people I knew didn’t tell their families,” she said. “The stigma was so profound—those early days were locked in this shroud of secrecy. I was locked into this little closet, but I was there with my family.”
When she was 24, she left a job in Washington DC to work as a treatment resource specialist at AIDS Survival Project in Atlanta. She learned everything she could about HIV and AIDS research, treatment and care, and met with clients visiting AIDS Survival Project for support and information. This was in 1993, before the internet was widely used, years before Google existed, and before there were easy ways to learn and share medical information.
“It was definitely a different day, and I think a difficult thing for people to imagine ever existed in HIV,” said Averitt. “We were subscribing to newsletters and medical journals and other publications. We were wading through volumes and volumes of information. At AIDS Survival Project, we had a couple hundred one-inch blue binders with photocopies of medical articles, categorized by complementary therapies, and treatments, and opportunistic infections. I had a fax machine, and I would come in to work every morning with just piles and piles of faxes that had come in over the course of the night from the FDA, from pharmaceutical companies, and all of these other sources. That’s how we would get updates on clinical trials, or treatments.”
Wading through all of this information, it was abundantly clear to Averitt that none of the information or treatment protocols were specific to women. Because men were most impacted by HIV and AIDS at the time (men comprised 87.5% of AIDS cases in the U.S. from 1988 – 1992) and because of the fear of “childbearing potential” in women, clinical trials on new HIV and AIDS drugs were conducted almost entirely with men.
“Everything we knew came from research in gay men,” said Averitt. “As important as all of their contributions are and were, we still needed to know definitively what was similar and what was different for women. The need for woman-specific information was huge. It just wasn’t there.”
This dearth of information led Averitt to write her first grant (which she was awarded), and to found WISE, an organization focused on treatment information and advocacy for women. She fought for things like women to be included in clinical trials, better data on how women respond to treatments, and women-specific labeling on approved drugs. She moved to San Francisco, for a time, when WISE became the women’s program of Project Inform.
Averitt recalls these years as “challenging—and sometimes, contentious.” Not everyone believed that resources should go to women-specific research, or that there was any reason to believe women might respond to drugs differently than men. Oftentimes, she would be the only HIV-positive woman at a table full of HIV/AIDS decision makers, fighting to make her voice and agenda heard.
When she turned 30, Averitt decided to take a year off from work to hike the 2,200-mile Appalachian trail. On the trail, she realized that she needed to establish an advocacy network that didn’t rely solely on her presence.
“I wanted women to have access to information even if I wasn’t at the table. Where positive women, their intimate care provider circle, clinicians and other support service providers, and researchers could go for accurate HIV and AIDS information.”
In 2002, she founded The Well Project (www.thewellproject.org), a woman-focused HIV information and support site that to this day serves visitors from around the world.
In addition to online content, the project hosts a blog for positive women, and includes a Women’s Research Initiative on HIV/AIDS (WRI), a transdisciplinary think tank that meets yearly to expand and enhance research and policy efforts impacting the lives of women living with and at risk of HIV.
Since it was first founded, WRI has been instrumental in advancing some critical initiatives related to women and HIV research ranging from changes in drug labeling to research priorities, novel collaborations, and important research. She’s very proud of the WRI’s role inspiring a study called GRACE (Gender, Research And Clinical Experience)—a landmark HIV treatment study conducted between 2006 and 2008 by Tibotec Therapeutics (now Janssen Pharmaceuticals) that enrolled nearly 70% women and 87% people of color in the U.S.
“After 15 years of hearing over and over again that women don’t participate in clinical trials, we upended that idea with GRACE. It was extraordinary, because it was proof that you can do it. This started a shift in how companies engage women earlier in research.”
“It’s been an extraordinary run,” said Averitt. “I’ve had a front-row seat—if you will—through the iterations of both the epidemic and pandemic, but also the movement. And I feel enormously grateful for it.”
San Francisco AIDS Foundation serves women through a variety of programs and services—including women who are part of TransLife and Latino Programs, who are served by the Black Health Centers of Excellence, and those who access services at the 6th Street Harm Reduction Center.
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