Profiles in Courage: Here Are 6 Frontline Warriors in the Fight to End HIV
As we commemorate the 30th annual World AIDS Day (though Hornet supports renaming it World HIV Day), we’re fortunate to live in a time when, for many, HIV is now manageable. But that wasn’t always the case — and it’s still not universally true today.
Below, we salute six individuals who put everything on the line to advocate for the HIV-positive community, warriors in the fight to end HIV.
1. Dr. Mathilde Krim
Dr. Krim was at the forefront of the fight to end HIV from the beginning, combining her scientific knowledge with compassion and a fierce dedication to social justice. A gifted virologist, she founded the AIDS Medical Foundation in 1983, just two years after the CDC first identified AIDS. She eventually became the founding chair of amfAR.
At the height of the epidemic, she tirelessly fought for research dollars and against stigma, promoting condoms and needle exchange programs, opposing the use of placebos in AIDS drug trials and calling out homophobic religious and political leaders. While others in the medical field closed their doors to people with HIV, hers was always open.
“I genuinely believe that we wouldn’t be where we are today without Dr. Krim’s brilliance, determination and mobilization,” says Tim Horn of the Treatment Action Group (TAG). “Beyond her unparalleled contributions to HIV/AIDS research fundraising and awareness, she was an interminable source of strength, support, and wisdom for countless activists over the years.”
2. Larry Kramer
In 1981, the same year The New York Times first reported on a “a rare and often rapidly fatal form of cancer” plaguing the gay community, Larry Kramer founded the Gay Men’s Health Crisis to help those affected by AIDS. He later poured his energy into ACT UP, a controversial direct-action group determined to fight to end HIV and keep positive people from being swept under the rug.
But perhaps Kramer’s most indelible contribution is the autobiographical play The Normal Heart, which sees activist Ned Weeks fighting the medical community, his family, City Hall and ultimately the advocacy group he helped found, all while his lover succumbs to HIV.
“Some reporter called me ‘the angriest gay man in the world’ or some such,” Kramer once remarked. “Well, it stuck, but I realized it was very useful.”
3. Cecilia Chung
After starting her transition in 1992, Cecilia Chung lost her home and her job, was cut off from her family and turned to sex work to earn a living. But she overcame HIV, physical and sexual violence and drug addiction to become one of the preeminent trans activists in America.
Much of Chung’s work has involved combating HIV in the trans community, which has long been notoriously underserved. Trans women in particular face obstacles to accessing health care — with limited financial resources, some find they are forced to choose between taking antriretrovirals or hormones.
Chung has worked as an HIV counselor at the UCSF AIDS Health Project and as an HIV Program Coordinator at the API American Health Forum. She was appointed to the Presidential Advisory Council on HIV/AIDS by President Obama and was the first person with HIV to chair the San Francisco Human Rights Commission.
“When I was coming into the movement, transgender people were dying left and right — not just because of violence, but because of what we later found out was HIV,” Chung, who now works at the Transgender Law Center, has said. “We weren’t just fighting for our rights, we were fighting for our lives by demanding treatment and more research. We were also demanding to be seen as human beings.”
4. Ryan White
From the beginning, many Americans saw HIV as an illness affecting gay men and drug users, not “normal” people like them. That changed when Indiana teen Ryan White came forward as HIV-positive. White, a hemophiliac, had contracted the virus from a transfusion and, while doctors insisted he posed no risk to other students, he was barred from attending school. Ryan’s appeal made front-page news and drove home the message that the virus didn’t discriminate, even if the public did.
His family won their appeal, and Ryan went back to school, got an after-school job and even went to prom. Throughout, he advocated for research, education and acceptance. “AIDS can destroy a family if you let it, but luckily for my sister and me, Mom taught us to keep going,” he said. “Don’t give up, be proud of who you are, and never feel sorry for yourself.”
Four months after his death in 1990, Congress passed the Ryan White CARE Act, the largest federally funded program for Americans living with HIV/AIDS.
5. Festus Mogae
Fueled by rampant homophobia and AIDSphobia, HIV has killed millions in Africa. But in Botswana, where one in six adults is HIV-positive, former president Festus Mogae pushed for the decriminalization of both homosexuality and prostitution to help the fight to end HIV.
“I don’t look at other men, but there are men who look at other men, and these are citizens …” Mogae, who also told police to stop arresting gay and bi men, told the BBC. “We do not want to discriminate. Our HIV message applies to everybody. If we are fighting stigma associated with sex, let’s apply it to sexual discrimination in general.”
Now in charge of the government’s AIDS council, Mogae has also advocated for condoms to be given to prisoners. “If people can go to prison HIV-negative and come out of it HIV-positive, it means that prisons, whatever the law says, are one of the sources of infection.”
Under his leadership, HIV testing became routine nationwide, and Botswana became the first sub-Saharan African country to make antiretroviral drugs widely available free of charge. By 2007, a year before Mogae stepped down, nearly 90% of HIV-positive people in the country were receiving treatment.
U.N. Secretary General Kofi Annan praised his leadership for ensuring Botswana’s “continued stability and prosperity in the face of an AIDS pandemic which threatened the future of his country and people.”
6. Spencer Cox
Though he dropped out of college and had no real background in science, Spencer Cox’s work with life-saving HIV drugs helped save thousands of lives — including his own.
After arriving in New York as a 21-year-old in 1989, Cox quickly joined ACT UP and co-founded the Treatment Action Group (TAG), working with the FDA to fast-track HIV drug trials. His work helped facilitate the production of protease inhibitors, which revolutionized HIV treatment in the 1990s. Cox even designed a clinical trial to examine the effectiveness of Norvir, which led to its approval as an antiviral drug. Within two years, HIV-related deaths in America fell from more than 50,000 a year to less than 18,000.
“Some of the best people I have ever known I met in ACT UP,” Cox wrote in a POZ magazine post about the AIDS documentary How to Survive a Plague. “Decent, courageous, strong, brilliant people committed to changing the world for the better, even if they weren’t themselves going to be around to enjoy it. We laughed so very much … we sang, we made love … and we very consciously tried to make sure that, when the plague was over, there would be something left that would have been worth preserving.”
In 2006, as more gay men than ever found themselves facing a future, Cox founded the Medius Institute for Gay Men’s Health to address their emotional and mental health in the fight to end HIV. Sadly, Cox succumbed to AIDS in 2012 after developing a resistance to his drug regimen.