The End of AIDS? Advocacy in and Beyond 2016

Andrew Spieldenner, Ph.D.
Andrew Spieldenner, Ph.D.
Selfie by Andrew Spieldenner

The year 2016 has been a strange one in HIV. We had exciting news about the efficacy of treatment and we were recognized in the National HIV/AIDS Strategy, yet our voices seem to be dimmed at HIV organizations, government agencies and even planning bodies.

We hear about "intersectionality" when doing advocacy and social justice work; never has that been more pronounced.

As people living with HIV in the United States, we had amazing meetings. We were prominently featured at AIDS Watch in Washington, D.C.; HIV Is Not a Crime in Huntsville, Alabama; at the Positive Women's Network - USA Leadership Summit and Positive Living Conference in Fort Walton Beach, Florida; at the White House meeting on HIV stigma; as part of a national coalition of HIV advocates meeting with Secretary of State Hillary Clinton and Senator Bernie Sanders on their way towards the U.S. presidency (no Republican candidate returned our emails); at the International AIDS Conference in Durban, South Africa; and many other places locally and regionally. We changed state laws on HIV criminalization in Colorado. We met each other at conferences, at community planning meetings, at advisory boards, at bars, at coffee shops, online, in waiting rooms -- everywhere.

As advocates, organizations and state agencies touted the "end of the epidemic" through plans, press releases, initiatives and media articles, I dealt with friends who were newly diagnosed; friends attempting to manage an overly bureaucratic and difficult public benefits system; friends who were between jobs or needed a place to stay; friends who were discovering mental illness, admitting to addiction and losing their relationships. I realized that even if everyone had HIV treatment access and adherence, we would still need supportive services, still need each other: to talk, to advise, to share, to bond, to love, to find a path through the precarity of our lives.

We had a rough summer. On June 12, 2016, a lone gunman walked into the Pulse nightclub on Latino gay night in Orlando, Florida. He killed 49 people, most of them brown and queer in some way. People pushed themselves forward in light of this disaster -- from the homophobic Florida Senator Marco Rubio and State Attorney General Pam Bondi, to random people online insisting this affected everyone the same way. But it doesn't. Some of us live closer in proximity to this massacre; we find ourselves in brown queer spaces often. The Pulse disaster affects the way we celebrate Pride, go to the bar and look at a stranger in the club.

As the HIV epidemic becomes browner, our support has shifted. The gay community seems more concerned with marriage than HIV health disparities. Many HIV organizations have changed their names and missions, or merged with larger health care groups. Government agencies have been quick to call us "consumers" or "patients" rather than people living with HIV. We have seen coalitions and advocacy groups actively exclude sex workers, trans people, immigrants and people who have experienced incarceration.

As we anticipate a new presidential administration, we as people living with HIV have to do better to build our coalitions, to work together, to engage the parts of our communities that make us uncomfortable, to stand up when others attempt to divide us. It is worth it, I promise you. None of us are acceptable losses.

Andrew Spieldenner, Ph.D., is an assistant professor of rhetoric at Hofstra University and chair of the United States People Living With HIV Caucus.