Tag Archives: Treatment Action Group

Farewell Spencer

spencercox

Spencer Cox, one of the world’s most prominent AIDS activists and a highly respected “citizen scientist” has passed away.

Spencer Cox, the 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, has died at Columbia Presbyterian of AIDS related causes, France writes in a note:

 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 (Foundation for AIDS Research), 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 (Marisa Cardinale <marisacard@aol.com>). 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 ground breaking 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.

Writing for Poz in 2006, Cox wrote:

“Some of my friends lived for almost 20 years through a flood of death, illness, fear and sadness. And when effective treatment came along and the dying slowed—at least in much of the developed world—everyone assumed that things had gotten better, that we didn’t need to think about it anymore.  But I don’t think that’s true. I think those of us who were in the middle of it were deeply affected by what we experienced and that it affects the choices we make today. I wonder if that’s not partly why the depression rate among gay men is about three times higher than among straight men.

“Because of my memories of those times, I try to appreciate life and the people special to me. But I can also see that I have to fight off an ongoing fear that things could go suddenly, terribly wrong, that the worst-case scenario is also the most likely.”

“What I learned from that is that miracles are possible. Miracles happen, and I wouldn’t trade that for anything. I wouldn’t trade that information for anything. I don’t know what’s going to happen. I don’t know what’d going to happen day to day. I don’t know what’s going to happen next year. I just now, you keep going. You keep evolving and you keep progressing, you keep hoping until you die. Which is going to happen someday. You live your life as meaningful as you can make it. You live it and don’t be afraid of who is going to like you or are you being appropriate. You worry about being kind. You worry about being generous. And if it’s not about that what the hell’s it about?”

Farewell Spencer, and thank you for all your hard and contribution

Spencer

Spencer Cox
1968 – 2012

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HIV and TB activist Winstone Zulu has Died

The prominent HIV and TB activist Winstone Zulu has died at the age of 47 in hospital in Lusaka.

Mr Zulu was diagnosed with HIV in 1990 and was the first person in Zambia to make a public statement about his HIV status.

He began to take antiretroviral treatment in 1996 and contracted tuberculosis in 1997. After effective treatment for TB he became one of the first HIV activists to champion the need to address TB. One of 13 children, Winstone Zulu lost four brothers and two sisters-in-law to TB between 1990 and 2003.

Not only was Winstone Zulu a hero in the fight against AIDS, but he was also a pioneer in bringing AIDS activism to the hitherto barren and civil society free zone of tuberculosis prevention, treatment, and care,” said Mark Harrington, executive director of Treatment Action Group.

“Winstone was lovely, a courageous, insightful, gentle and eloquent activist and a real pioneer of the HIV and TB access movements for Africans in Africa. He was also that rare thing, a heterosexual man who was honest, wise and funny about male sexuality. He didn’t just defy three epidemic diseases (he had polio as well as HIV and TB), he also survived AIDS denialism,” said Gus Cairns of NAM.

Winstone Zulu stopped HIV medication in 2000 after encountering AIDS denialist views that HIV did not cause AIDS.  He resumed treatment in 2002 after a huge decline in his CD4 cell count left him once again seriously ill.

He continued to play a prominent role in AIDS and TB activism and was praised by Nelson Mandela as a pioneer of TB activism at the 2004 World AIDS Conference. In 2006 he was awarded the Stop TB Partnership Kochon prize for his contribution to TB control.

Speaking at numerous international conferences and events, Winstone sounds the alarm on the links between HIV/AIDS and TB and advocates for increased financial resources and improved programs to combat TB and TB-HIV. During recent trips to Japan, Winstone has garnered over a dozen media hits, including several front page articles in major outlets, particularly around his meetings with the then Prime Minister of Japan and the current Deputy Prime Minister.

Winstone’s experiences and actions make him a leader in TB advocacy and speak volumes to the social attention and political will that can be generated by just one individual using his voice.

In the following video, Winstone addresses the TED conference on 8th October 2008.

“Winstone Zulu worked tirelessly to change the world, at no small cost to his own health and wellbeing,” said Mark Harrington. “His legacy is a stronger link between HIV and TB activists, but his inimitable calm and passionate voice of reason will be deeply missed.

Winstone Zulu is survived by his wife Vivian and their four children.

Original Articles via NAM and Action.org

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