January 25, 2013

January 25, 2013


Spencer Cox Remembered


Welcome to another day in my life. Today is Friday and we have almost made it through another work week. I hope you are having a beary safe and great Friday. It is another busy day for Dab the AIDS Bear and me.

A few weeks ago, a fellow activist and friend Spencer Cox died. Spencer was a pivotal AIDS activist who co-founded ACT-UP and TAG (Treatment Action Group) and was featured in David France's recent documentary How to Survive a Plague.

As a very young man fresh from Bennington, where he studied Theater and English Literature, he arrived in NYC after finishing just 3 years. He was diagnosed with HIV soon thereafter. By 1989, at age 20, he had become spokesman for ACT UP during its zenith through the early 90s. A member of its renowned Treatment & Data committee, and later co-founder of TAG (the Treatment Action Group), he schooled himself in the basic science of AIDS and became something of an expert, a "citizen scientist" whose ideas were sought by working scientists. In the end, Spencer wrote the drug trial protocol which TAG proposed for testing the promising protease inhibitor drugs in 1995. Adopted by industry, it helped develop rapid and reliable answers about the power of those drugs, and led to their quick approval by the FDA.

Even before ACT UP, he began work for amfAR, first as a college intern, eventually going on staff as assistant to Director of Public Affairs, responsible for communications and policy. He left there to co-found the Community Research Initiative on AIDS (now the AIDS Community Research Initiative of America, ACRIA) with Dr. Joseph Sonnabend and Marisa Cardinale. At ACRIA, he ran public affairs and edited all publications.

From 1994 to 1999, he was Director of the HIV Project for TAG, where he did his groundbreaking work in drug trials designs. He designed the drug trial adopted in part by Abbott as they were developing Norvir, the first Protease Inhibitor to head into human trials. It had an "open standard-of-care arm," allowing people on the control arm to take any other anti-AIDS drugs their doctors prescribed, versus the arm taking any other anti-AIDS drugs plus Norvir. It was this study that showed a 50% drop in mortality in 6 months. Norvir was approved in late 1995. Though the results were positive, the proposal sharply divided the community, many of whom thought it was cruel to withhold Norvir on the control arm. Spencer defended himself in a controversial BARON'S coverstory that made him, briefly, the most-hated AIDS activist in America. Ultimately he was vindicated.

But what ultimate killed Spencer may have been fatigue. Fatigue from being a long term survivor. Fatigue of years of on and off again drug abuse. Fatigue of survivor's guilt. And fatigue of living when he never expected to live. But most of all, I personally think because people did not reach out. They did not call. They took for granted when he dropped off the grid this last time that everything was okay.

Just a reminder for us all to regularly reach out, make sure the ones you love are okay. If not else, just let them talk and listen.

Because people didn't... we have one less angel in our community. RIP Spencer! You will be remembered and you will be missed!

Until we meet again; here's wishing you health, hope, happiness and just enough.

big bear hug,



Daddy Dab