For two years I waited. As the countdown dwindled from months, into weeks and finally days, I meticulously planned out how I would maximize the Global Village at the XIX International AIDS Conference 2012 in Washington DC. The unveiling of the AIDS quilt, the Human Red Ribbon, the United in Anger film screening and the We Can End AIDS mobilization march were just a few of the events I marked down. In the meantime I devoured every article I could to keep up with the latest developments in HIV research. The Thailand trials, the Berlin Patient and Truvada’s late breaking FDA approval for prevention, dropped me right at the conference doorsteps ready to learn more. But most of all ready to march and fight for change.

I knew it was going to be an inspiring conference but nothing prepared me for what I experienced. It was a homecoming of sorts. First it was familiar faces. From among thousands of delegates from all over the world I reconnected with former colleagues who I had marched and worked with on various HIV medicines and stigma issues in the past.

Second, I was reminded of that stirring in my belly from when I first became involved. One of the things that still moves me about AIDS 2012 is how many times I heard or saw printed on banners or in newspapers, the words “vaccine”, “cure” or “end of AIDS”. Hushed tones around such ambitious goals in previous years have given way to bolder calls for renewed focus. The mood was positive, and infectious. I was back, ready to fight, and not alone.

This renewed focus was evident during the We Can End AIDS Mobilization. I was overwhelmed as we marched through downtown DC. I thought about the millions already dead. Whenever our Human Rights & Harm Reduction branch got too quiet I shouted,

“This is not a quiet march!

People who should be here are dead!”

And I meant it. We need to fight the fatigue that let us drop back into silence. We have lost too many voices.

Weeks later I think about this as I realize I left AIDS 2012 not really invigorated, but challenged. After arriving late and nearly melting into a puddle of tears because I thought I wouldn’t get to see it, I managed to squeeze into a packed screening of United in Anger: A History of ACT UP. What I saw has reinvigorated my commitment to HIV activism and made the deficities we are dealing with more pronounced. No image was more powerful than that of ACT UP members scattering ashes of their loved ones over the White House lawn. Scenes of a Times Square filled the screen, the bodies fighting injustice, complacency and misplaced priorities, were a jolt to my system.

In comparison, our march the day before seemed conciliatory, an amateur’s dress rehearsal. Our White House tribute of ribbons, pill bottles and syringes to symbolize the solutions we know can turn the tide of the epidemic now seems more like a nudge than an outcry. A gallant effort as we regroup. For all our passion, when stacked against 1990s era ACT UP–men and women fighting for their lives—we seem timid and barely angry. This is what I am left with. For all the progress we have made we have a long way to go. Treatment action and access is a blessing but sometimes it makes people forget that today people are still dying of HIV/AIDS. Today, just as it was needed in the 90’s, we need to “ACT UP, Fight Back, Fight AIDS”.

Despite all the optimism I feel about research to develop a vaccine and find a cure, I know the fight to end AIDS is far from over.


By day Joy Spencer is project director of the Digital Food Marketing & Youth initiative at the Center for Digital Democracy. There she works to raise awareness about the new age of digital advertising where the lines between entertainment and advertising are completely blurred. The project seeks to unmask the influence of immersive advertising techniques in promoting unhealthy food choices among children and teens. By night and on weekends Joy is a passionate HIV activist and educator. As co-chair of the Metropolitan Washington Public Health Association Health Disparities committee she works to provide HIV education in the district of Columbia as well as plan and facilitate community anti-stigma workshops.

To play UNITED IN ANGER: A History of ACT UP in your community contact Ted Kerr at tkerr@visualaids.org or call 212 627 9855.