Remembering the Human Factor

In my new memoir Body Counts, I write about the People With AIDS Coalition in New York. They and other early networks of people with HIV played an incredibly important role helping newly-diagnosed people cope. They supported me after I was diagnosed in the mid-1980s. PWAC and similar groups gave us strength to disclose our HIV status to others. They helped us deal with hostile or frightened families, friends and employers. They helped us survive life in an indifferent society and an apathetic or aggressive political structure.  These networks were a manifestation of the people with HIV empowerment movement as envisioned in the 1983 Denver Principles manifesto.

But as time passed, support for those networks diminished. Many of them went away.  The empowerment movement for people with HIV, initially modeled after the women’s health movement, changed and became more focused on ACT UP-style political protests and street demonstrations. Ultimately, “treatment activism” supplanted the empowerment movement as personified by Michael Callen, Amy Sloan and others in the early years.

Treatment activism has expedited access to the drugs that saved many of us, myself included.  But the human rights approach to the epidemic—protecting confidentiality, patient autonomy, combating stigma—were suddenly no longer priorities. The consequences of this shift are numerous. HIV criminalization cases, for example, have increased dramatically.

But there is hope: more recently, recognition has taken root for issues of legal barriers and stigma. And, to my great delight, the networks of people with HIV are on a rebound, once again asserting our right to a voice in the policy and decision-making that profoundly affects our lives.

One great development is the creation of the
U.S. People Living with HIV Caucus.  This is a constructive, efficient and respectful collaboration between national and local networks of people with HIV. I am proud to be a part of it.

Our 15-member steering committee includes representation from the five national networks of people with HIV in the U.S. (Positive Women’s Network/USA, International Community of Women with HIV/NA, Campaign to End AIDS, Global Network of People with HIV/NA and Sero Project), as well as ten other members representing prominent local networks or individual advocates.

The mission of the caucus is a simple one: speak with a unified voice for people with HIV in the U.S.  When that voice was muffled in the past, we suffered.  But the establishment of this caucus places us on a great track for the future. I’m so proud of everyone involved with the caucus, especially Executive Committee members Cecilia Chung, Naina Khanna, Barb Cardell, Vanessa Johnson and Andrew Spieldenner.  They’ve invested a lot of energy and expertise to make this happen.

To support this Caucus, we ask that you support or engage in a network of people living with HIV, either locally or nationally.  They are the Caucus.