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Citizen Scientist Spencer Cox’s Civil Disobedience: 10 March 1968 – 18 December 2012

“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’s going to happen day to day. I don’t know what’s going to happen next year. I just know, 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?”

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If you’ve seen the outstanding documentary How to Survive a Plague, then you are familiar with Spencer Cox who was among those featured in the film.

Spencer died yesterday at the age of 44 of AIDS related causes.

He was diagnosed with the disease just after graduating from college and he dove into activism. He became a pivotal AIDS activist who co-founded ACT-UP (AIDS Coalition to Unleash Power) and TAG (Treatment Action Group).  Earlier this year, Larry Kramer said: “Every treatment for HIV/AIDS exists because gay activists, almost all from ACT UP, fought like tigers to get them. This should stand as one of the great examples of what the gay population can achieve when they want something badly enough”.

Writes How To Survive A Plague director David France: ‘As an AIDS activist, he [Cox] helped spearhead research on protease inhibitors and played a central role in bringing the drugs to market — and saving 8 million lives. Over the years, he was a frequent and always brilliant source of mine, and a good friend.’

Cox 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, he 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.

Although initially highly responsive to HIV treatment, Cox began developing resistance to treatment in 2000. In 2009, he was first hospitalised with AIDS related symptoms.

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Cox said: “If I have one piece of advice for young, aspiring activists, it is to always hold on to the joy, always make it fun. If you lose that, you have lost the whole battle.”

In 2006, he 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.”

“You keep going, you keep evolving, you keep progressing until you die – which is going to happen someday,” he says in the final Interview he did with France for the documentary. “You make your life as meaningful as you can make it.”

He certainly did.

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