Tomorrow is World AIDS Day, conceived of by two public information officers from the World Health Organization in the 1980s as a day of HIV “awareness and remembrance.”
Increasing awareness is important. Our lives count, and when the very existence of those we love and fight along side of are erased (read people of trans experience), awareness means the difference between life and death. So too is it important to remember and reflect. But if neither spurs us to meaningful action, they are worth very little. For me, for this coming year, this World AIDS Day, awareness and remembrance mean a rededication to action.
My awareness of HIV began in 1984, a year I remember clearly, because the dystopian vision of a world gone horribly wrong in George Orwell’s 1984 seemed almost certain, given the reelection of Ronald Reagan. That year on December 1, I was still 16. I had a very bad perm and a girlfriend (coming out as gay was about three years away), and my awareness of a catastrophic epidemic that was to define my entire adult life was only dawning. Thirty-five years ago, the organization I’m proud to lead, Project Inform, was also about to dawn.
I remember first reading about AIDS in Rolling Stone magazine, one of the only mainstream magazines that at least made the attempt to talk about the disease without the most repugnant ignorance and stigma that most others peddled. The human immunodeficiency virus (HIV) hadn’t even been confirmed as the cause of AIDS. Six years later, I began volunteering and then working at Project Inform, which helped channel my fear, anger, and curiosity into a life’s mission and calling, as an HIV activist and educator.
Project Inform has evolved tremendously since then, an evolution that has been necessary and responsive to the times. We remain committed to ensuring that people living with, or at risk for, HIV and hepatitis C are aware of and have access to treatment and prevention, and in the case of hepatitis C, a cure. But we are also lending our leadership and expertise toward achieving an accomplishment we couldn’t have imagined back in 1984 and one that would become so tantalizingly possible in 2019—the end of both epidemics.
In the last two years, though, STD rates have nearly doubled. High STD rates mean that both the HIV and hep C epidemics will continue unabated. For example, in California, few of the estimated 400,000 people living with hep C know their status, and about half of the 115,000 people living with HIV aren’t consistently in care. This creates huge challenges and tremendous opportunities for change. Thankfully, Governor-Elect Gavin Newsom endorsed the concept of harmonizing services and funding to allow for an integrated response to HIV, hep C and STDs.
Endorsement is not action, however, and we will insist on action, especially for swaths of the country were the real advances in HIV and hep C are too far off to be a reality in some communities. There, talking about ending these epidemics is at best, a pipe dream, and at worst, an insulting dismissal of the reality that so many face.
Our small team of program staff collectively possess more than 100 years of experience fighting against two stigmatizing public health crises with “in-the-weeds” policy and science knowledge tempered by compassion and hope. We aim to leverage that to address what remains undone.
This coming year, Project Inform’s 35th, is going to be about reflection and remembrance, being honest with ourselves and our partners about the undone work, and about a rededication to ambitious change, social justice, and rendering World AIDS Day unnecessary.
Three lines from the Pulitzer Prize-winning play written by the brilliant Tony Kushner, Angels in America, have remained with me since it debuted the year I came to Project Inform in 1991. They remain relevant.
“You are fabulous creatures, each and every one. And I bless you: More Life. The Great Work Begins.”