amfAR, The Foundation for AIDS Research

Shame, Stigma, and HIV: An Interview with HIV/AIDS Activist Jeremiah Johnson

Despite comprising only 2 percent of the U.S. population, gay and bisexual men account for more than half of the 1.2 million people living with HIV, and nearly 70 percent of new infections each year,, according to the Centers for Disease Control and Prevention. Nearly one in seven are undiagnosed.

Jeremiah JohnsonJeremiah Johnson (Photo: Sean Black)In observance of the ninth National Gay Men’s HIV/AIDS Awareness Day on September 27, amfAR spoke to 33-year-old Jeremiah Johnson, HIV Prevention Research and Policy Coordinator for the Treatment Action Group (TAG), a New York City-based independent AIDS research and policy think tank.

amfAR: The gay rights movement has made huge strides over the past 50 years, yet in 2014 gay and bisexual men accounted for 83% of the estimated new HIV diagnoses among all males aged 13 and older. Why is this population still bearing the brunt of the epidemic, particularly against the backdrop of so much progress on other fronts?

Johnson: I think it’s a complicated history between LGBT activism and HIV. My impression has been that there was an early distancing between the two movements, part of it for maybe more of a sinister reason — people didn’t want to be associated with those disease-ridden people.  But I also think that there was a push to move away from painting it as a gay disease, which for better or worse, is how things move forward. I think that has led to these very different social movements. In the LGBT movement we have been selling love and marriage for a long time because it is the easier thing to sell to the public. We need to be selling health for our communities as well. I don’t think we’re doing it aggressively enough and I am concerned that there is still that distancing going on of not wanting to be associated with those ‘diseased people.’

amfAR: Even though gay and bisexual men make up the majority of Americans infected with HIV, half aren't receiving ongoing care or getting the virus-suppressing drugs they need to stay healthy. Why are so many infected men not getting proper treatment?

Johnson: I think that there are tremendous challenges posed by all sorts of HIV-related stigma: prior authorizations, mandatory mail ordering, things that make medication more expensive and inaccessible. While I am grateful for systems that help people living with HIV access medication, with each added layer of complication, it makes it harder for someone to stay undetectable. We are starting to see much better outcomes among white gay men. However, we are doing a really terrible job of addressing this issue among young black and Latino gay and bisexual men. I think historically, it’s because getting access to insurance, health care systems is harder for communities of color. There is also a legacy of abuse and mistreatment of minorities within health care professions.

amfAR: In spite of its proven effectiveness in preventing the acquisition of HIV, Truvada has been slow to catch on. I came across a headline that referred to it as “The Miracle Drug No One’s Taking.” How do we increase the number of people on PrEP?

Johnson: I think in general, it is hard to get people involved in preventive care. We sort of have a culture in America where you don’t engage in the medical system until there is something actually wrong. Just more broadly, access is a problem, especially in states without Medicaid expansion. And it’s not only the actual cost of the drug, which is something like $1,600 a month, but also the costs associated with the doctor’s visits and lab work. So not having access to quality health insurance that is going to cover all of that is a huge barrier. And while there are medication assistance programs, the application process is complex. One final thought is that because of this legacy of HIV, we hold gay men to this unrealistic standard of 100 percent condom usage 100 percent of the time. So gay men who use PrEP may face some level of shame for not adhering to these perceived sexual norms.

We need to keep prevention for HIV negative people at the heart of our prevention efforts. That means making sure that everyone has access to PrEP, PEP (post-exposure prophylaxis), clean syringes, and a handful of other preventative solutions

amfAR: You were diagnosed with HIV in 2008 while serving in the Peace Corps and dismissed because of it. What made you lobby to change the policy, especially when it meant going public with your status?

Johnson: It was an incredibly painful time. I didn’t know nearly as much as I do now. But I knew enough about HIV to know that it was possible to take medication and live a full life. It felt very unfair and very unjust that I wasn’t going to be able to continue working with my students in Ukraine. There was a part of me that really thought either I can fight this or I can go and sit quietly and feel defeated and accept that I am somehow lesser than other people. I also had a tremendous support group through friends and family who, in those moments when it got really scary or when I didn’t know exactly how I felt about having my name out there and my name attached to my diagnosis, helped bolster me up.

amfAR: You've spoken about the opposition, isolation, stigma and discrimination you experienced when you were diagnosed. Do you detect any change in public perception eight years later?

Johnson: I frequently step out of my HIV bubble and find that I am shocked by some of the perceptions that people still have around HIV. A lot of their knowledge is from when Magic Johnson came out with his diagnosis. Some people might have had heard a little bit more with Charlie Sheen’s interview. My feeling is we have a long way to go. We aren’t educating kids in school. Most media cover HIV irresponsibly. Most medical students learn very little about HIV stigma or LGBT health in general. So there's no place really for people to get that information. Until we start to ensure that there are improved sources of information for broader America, I think we are going to continue to see that sort of 1990s perception of HIV.

amfAR: As the HIV Prevention Research and Policy Coordinator for TAG, you have described your goal as “helping to change the broken conception of HIV prevention.” What does this entail?

Johnson: It’s two things. One, we need to keep prevention for HIV negative people at the heart of our prevention efforts. That means making sure that everyone has access to PrEP, PEP (post-exposure prophylaxis), clean syringes, and a handful of other preventative solutions. We need to stop acting like condoms and behavioral interventions are actual solutions on a large scale. And two, we need to make sure that PrEP and PEP don’t just become prevention tools for the privileged while other communities are stuck with ineffective prevention approaches.