We’ve come a long way since the days when fighting for LGBT rights demanded action such as the Stonewall Riots. Or a critical need for HIV medications prompted protests blocking traffic on the Golden Gate Bridge. The world saw success come from those tactics—and now, more than ever before, people who are part of marginalized populations are able to stand up and demand that their voices are heard. For access to bathrooms that fit with their gender identity, for social and economic inequality, for less violence, for their lives.
But in the world of HIV—are we finished? Have the communities and people affected by HIV and AIDS fought hard enough, and is the job of AIDS activists near an end?
In the U.S., it may be easier to think it’s time to hang up our collective hats. The incidence rate of new infections has been relatively stable in recent years (although it is not zero). New HIV infections are being prevented with new, exciting, effective biomedical HIV prevention tools like pre-exposure prophylaxis (PrEP), post-exposure prophylaxis (PEP), and treatment as prevention (TasP). It is even easier for people to quickly suppressing their viral loads on potent, once-daily, one-pill HIV treatment regimens.
In San Francisco—especially—it can be easy to lose sight of the rest of the world’s struggle with HIV. Our rainbow-covered city reduces barriers to testing, prevention and treatment with some of the best community-based, LGBT-friendly grassroots HIV organizations. HIV testing services blanket the city with free services available on every day of the week and in many different neighborhoods. Free health services are available to men who have sex with men, transgender men, sex workers, people who inject drugs, women, transgender women, and others. Thousands of people have started to take PrEP—reducing their risk for HIV by over 90%. Collectively, the city is on a quest—and making progress—to no new infections, no HIV stigma, and no AIDS-related deaths.
At the International AIDS Conference this year, Shaun Mellors, of International HIV/AIDS Alliance facilitated a session about AIDS activism across the ages, which included a panel discussion by AIDS activists with storied histories tied to the epidemic. Listening to their discussion made it clear: While it may seem like our collective passion to fight AIDS may be waning, our anger, time, talent and energy is still desperately needed.
Fighting for our lives: AIDS activism in the early days
“For some of us, it began with an HIV diagnosis,” said Mellors.
There was no choice but to be an AIDS activist in the early days of the epidemic, recalled Mellors, who was diagnosed with HIV when he was 20, and other panelists who were diagnosed with HIV in the 80s and 90s.
“I never set out to be an activist, but there was no other option,” said Kate Thomson, a long-time AIDS activist and head of the community rights and gender department of the Global Fund, who acquired HIV in the early 80s through her injection drug use.
After being diagnosed with HIV, Thomson heard from doctors that she would die soon, and that there was nothing they could do other than provide palliative care. So she set out to find, along with friends who were HIV-positive gay men, everything she could about HIV and possible treatment options—but there was little to find.
“I realized very early on that nobody else was going to help me. I had to find the information. I learned how to speak out and demand my rights and channel my anger. There were no services. We had to push for things that weren’t there,” she said.
It may be difficult to image, she continued, how people organized and fought for services and care back in those days. People living with HIV were dying at an astonishing rate—making it difficult to maintain supportive relationships. Fear of the unknown made people terrified, and AIDS stigma further pushed people living with HIV and AIDS to the margins of society.
“Back in those days, we didn’t even have internet,” recalled Thomson. “We didn’t have mobile phones. We had landline phones, and then we were all really excited when we got fax machines. We used them to organize in those days! But there was so much passion, and energy, because we had no other options.”
Did effective HIV treatment silence us?
The rollout of highly active antiretroviral therapy in 1996 brought hope to the HIV/AIDS community. Many people in high-income country gained access to effective, lifesaving medications. From 2000 to 2016, the number of people on antiretrovirals increased from about 50,000 to 17 million.
Panel members recalled that the International AIDS Conference in 2000, also held in Durban, South Africa, was a significant turning point—brought upon by AIDS activists—that increased AIDS awareness and ramped up the provision of effective treatment across the world. Barbara Lee, a congresswoman from the United States and former ACT-UP member, recalled the “Break the Silence” t-shirts that many people wore during the conference and the powerful message sent by activists before, during and after the conference.
Thanks to the activism, and the media, that amplified the message of ‘Break the Silence,’ Lee said she was able to organize enough support to restore $42 million dollars in AIDS foreign assistance funds in 2000. “But that began with activists forcing members of Congress to do the right thing,” she said.
“I think that things have changed, and they haven’t changed,” said Mark Heywood, one of the founding members of Treatment Action Campaign. “They’ve changed so much for some of us, that we forget they haven’t changed at all for a lot of us. So, have things changed? Yes. Have things changed? No.”
Among some groups of people, HIV incidence rates are astonishingly high: Black gay men in the US have a 1 in 2 lifetime risk of HIV over their lifetime. In South Africa, about 20% of all adults are living with HIV, and every week, 2,400 young women are infected with HIV. And there are undeniable gaps in ARV coverage for people around the world as well. In Eastern Europe and Central Asia, only 1 in 5 people with HIV are on medications. In 10 countries in the world, less than 20% of people living with HIV are on medication. Even in countries with ARV availability, other challenges impede treatment. In the US, only 30% of people living with HIV are on ARVs with suppressed viral loads.
“We’ve come a long way,” said Lee. “I’m worried, though, that we’ve lost the anger and the passion we had back then. Sometimes things seem a bit quiet, in terms of our activism. It’s time for a wake-up call.”
After starting effective HIV treatment in the 90s, said Thomson, “I had the luxury of life. I had the opportunity. And yet, my good friends in Africa and elsewhere continued to die.”
Treatment, she thinks, changed the nature of our global HIV activism—creating an “us” and “them” dynamic between the haves and the have-nots.
“Up until that point, people were coming together as a global community, because we shared a lot of the same issues. People were dying, wherever they were. Suddenly, after 1996, we started seeing this big separation.”
“I don’t think anyone will want to return to the ‘old days,’” said Mellors. “But I do think that there is this really unfortunate side effect of treatment, in terms of what it has had on activism. I do think that many of us have become too complacent. Because we are comfortable. There is no longer a sense of urgency. There is no longer a sense of passion.”
How do we keep AIDS activism alive?
Realizing—and capitalizing—on the many roles that activists can play is part of the solution, said Thomson. Activism can take many forms—beyond protesting and demonstrations.
“Some of us have become global bureaucrats but have activism at our core. Others of us work on the front line. Some work in science and medicine. Part of it is, how do we joint the dots?”
We also need to include, and inspire, people who traditionally AIDS activists might think of as “the enemy,” said Heywood. “Like people in pharmaceutical companies. There are a few decent human beings in them. We’ve got to get to them—and get them to take up their own fight.”
Let us always remember those who came before us, said Heywood, like we did in the early days, because that will unite us in our shared cause.
“I remember we used a poster, that had the names of everybody who died, that we knew who died, in the previous six months. In South Africa, still, 400 people will die of AIDS and TB today. Why don’t we know who these people are?”
We are so focused on living these days, said Mellors, that we can forget that people are still dying. “I tend to think that we are being untrue to the memories of those that have gone before us. In the dark days, many of our brothers and sisters died, and were remembered. But now we are not necessarily remembering them as we did in the past.”
“Once again, we’ve got to Break the Silence,” said Lee. “We have to build up, and mentor, new leaders in this fight.”
By Emily Newman