Twenty-six years ago at Tropical Park in Miami, I locked eyes with the adorable captain of Hialeah High School’s cross-country team. We raced each other several times that season. Later that year at my own high school, Miami Palmetto, a handful of students attended a presentation in the library while the rest of the school — nearly 3,000 students — watched on closed circuit televisions in our classrooms. The guest speaker, that cute captain from Hialeah High, introduced himself as Pedro and shared that he was HIV-positive. Toward the end of the presentation, a student raised her hand and asked if he was gay. I’ll never forget his response: “It doesn’t matter if I’m gay or straight; I got HIV because I had unsafe sex.” But I needed to know. When class got out, I ran as fast as I could to the library, but he was already gone. I would never see him again, at least not in person. Four years later, I was pleasantly surprised to see his face again on TV, this time as a cast member on MTV’s The Real World: San Francisco. He was none other than Pedro Zamora. He died later that year.
I’m not going to credit Pedro with getting me into the LGBTQ movement, but he certainly played a role. The reality is that the movement for LGBTQ equality would not be where it is today — and I would likely not be part of it — if it weren’t for HIV. During the early years of the pandemic (translation: an epidemic on a global scale), when people were dying in the United States by the thousands in the face of government inaction, LGBTQ people mounted one of the most effective public health campaigns the world has ever seen. We built our own organizations like Gay Men’s Health Crisis and the American Foundation for AIDS Research to work within the system, and organizations like AIDS Coalition to Unleash Power and Queer Nation to protest an administration that idly stood by and watched us die. Lesbians, gay men, bisexuals, transgender people, and our allies united like never before to fight the ignorance and homophobia that we all knew were fueling the spread of HIV.
As a young college student, I joined that fight. I shaved my head and pierced my ears, plastered my leather biker jacket with stickers and buttons, and fought against the deafening silence. That passion and the institutions we created to harness it reinvigorated a movement with a force it hadn’t seen before. As a result, the 1990s saw the introduction of the Employment Non-Discrimination Act, an attempt to repeal the ban on LGB service members, and even an attempt to legalize marriage licenses for same-sex couples in Hawaii. Perhaps most telling was the proliferation of organizations serving LGBTQ young people. We were coming out in greater numbers than ever before and at younger ages, while our stories were finally being told in mainstream movies and on prime-time television. The bullet Harvey Milk hoped would smash every closet door turned out not to be a bullet at all but a deadly virus.
What a long way we’ve come, what with marriage equality and all. Back in the early '90s, I don’t remember hearing much talk about marriage, except maybe as a distant dream. Instead, I remember wondering if my best friend, who’d recently tested positive, would still be alive in two years. Fast forward 22 years and he is very much still alive, and he and his husband are raising their first child in the suburbs. HAART (highly active antiretroviral therapies), the class of treatments that emerged in the mid-1990s and dramatically improved the life expectancy of people living with HIV and saved my best friend’s life, wasn’t the end of the story. Neither is the more recent development of pre-expoosure prophylaxis, the taking of a pill taken every day to prevent infection. PrEP is sometimes hailed as the “end of AIDS,” but that is still only a dream. An entire generation has grown up in an age when viral loads can be beaten back to undetectable levels and HIV is no longer a death- sentence. It can be treated — and now prevented — with “miracle” drugs, making HIV so manageable that many no longer see it as a “big deal.” This is liberating, to say the least: a collective sigh of relief for those of us privileged enough to have beneftted from these advances. But like I said, this is not where the story of HIV ends. The end of HIV is somewhere in our future, but that future is not now.
The drugs used to prevent and treat HIV are expensive and require regular visits to the doctor’s office. This calls into question access issues, like whether or not someone can afford health insurance, co-pays, time off from work to visit the doctor, and even basic transportation to get to their appointments. These access issues don’t apply to me, yet my quest to start PrEP was still met with hurdles and hoops. My pharmacy is in the gayest neighborhood in D.C., but it won’t fill my prescription for Truvada (the drug used in PrEP), so every month I have to call a mail-order pharmacy in Kansas to talk with a stranger on the other end of the line. My co-pay is covered by Gilead, but that too required a phone call to obtain a benefits card. Every three months I have to take a few hours off work to visit my primary care physician, in my case only a short walk from home, for a complete screening, since Truvada doesn’t prevent other sexually transmitted infections (syphilis and gonorrhea are both on the rise in many communities). If for some reason I don’t call the pharmacy in time or miss an appointment, I run the risk of not adhering to the strict once-a-day schedule, which can result in resistant strains of the virus. In short, obtaining and adhering to PrEP is not easy without resources and support, so it can’t be our sole focus.
After years of vigilance, we’ve let our guard down. Education efforts have dwindled as we’ve put all our faith in pricey pharmaceuticals. We’ve forgotten that safer-sex education and free condoms were once the only weapons we had. A younger colleague recently shared that the only HIV education he received in school was a showing of the film Philadelphia. HIV thrives on ignorance, stigma, and inequality, and there’s an abundance of all three.
People continue to get infected with HIV. The virus, perhaps now more than ever, disproportionately infects those with the least access to education, prevention, and treatment services. As a result, the disparities by race, gender, and region are glaring. Southern states are home to about a third of the U.S. population yet account for nearly half of all people living with HIV. Black gay, bisexual, and other men who have sex with men account for nearly 60 percent of those new infections.
Stigma based on race, gender, and sexual orientation drive HIV disparities and health inequities by reinforcing differences in economic status, resources, and social and political power. The people most at risk for and living with HIV, many of whom are transgender, sex workers, immigrants, or IV drug users, are also the most likely to be targets of prejudice and discrimination. The mass incarceration of men of color, particularly black men, is another driving factor of the epidemic, and HIV criminalization laws only add to the problem. Additionally, black men living with HIV who have sex with men may be stigmatized in white communities because of their race, in black communities because of their sexual orientation, and in black and gay communities because of their HIV status.
Politics and funding also play a role. For example, many of the people living with HIV in the South are poor and live in rural areas miles from a clinic without access to transportation, yet most funding is targeted toward urban areas. San Francisco and New York, for example, receive 36 percent of HIV funding, while they only account for 19 percent of those living with HIV. The South, on the other hand, receives approximately the same percentage of funding despite having nearly half of all new diagnoses. Add to that the fact that none of the states with the highest rates of new HIV diagnoses—Alabama, Georgia, Florida, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, and Texas — has opted to expand Medicaid under the Affordable Care Act. There is much work left to be done before we see the end of HIV.
We need to refocus our movement’s work on HIV. It’s part of our DNA. Equality Federation members recognize this, whether by building leadership among black gay men in Atlanta to educate the community about HIV, or by fighting the HIV criminalization laws on the books in nearly every state in the country. HIV is still an LGBTQ issue. It is also an issue of racial, economic, and reproductive justice. It is by definition the intersectional work our movement needs to tackle. By centering at least some portion of our work on HIV, we are reclaiming an issue that has as much relevance to the communities we advocate for as it did in the mid-1980s.
Equality Federation will continue to work with our members to forge a new HIV agenda. We will offer more opportunities like those we’ve provided at our annual Leadership Conference and regional summits. We’ll continue to build relationships with HIV/AIDS organizations and funders. We’ll identify model programs and legislative campaigns to share with other states across the country. This includes tackling state laws that criminalize people with HIV, which can be used to charge them with reckless endangerment, assault, and even homicide for the simple act of having sex (does anyone remember sodomy laws?). It also includes advocating for comprehensive sexuality education, clinical trials that include all populations, needle exchange programs, affordable health care, and drug and patient assistance programs. We need to protect the Affordable Care Act to ensure that preexisting conditions are kept out of the equation when someone tries to obtain health insurance. It also means educating people about PrEP, helping people with HIV navigate their treatment options, and having open and honest conversations about the roles sex, substance use, and self-worth play in our lives. We know that HIV has everything to do with the lived equality of LGBTQ people in the communities we all call home, and we will continue the fight.
ANDY GARCIA is the program manager for the Equality Federation.