May 9, 2008
The following is a compilation from three of Paul's Poz.com community blogs.
In many parts of the world, May 1 is celebrated as International Workers Day, which observes the struggle of workers for a better life. In that spirit I celebrate activism -- specifically the first generation of AIDS activists who forged a monumentally successful movement in the crucible of fear, stigma, illness and death. This early movement was one of the first times when a group of sick people and their allies consciously organized themselves to take on the government, scientific establishment and pharmaceutical industry.
They faced daunting odds. Many were sick. Many were dying. Vilified, ostracized and feared they had few friends and many more enemies in the corridors of power. Still they fought, and largely won. It was a creative and multi-faceted force with tactics ranging from sits-ins to mass demonstrations at the NIH, to shutting down the Golden Gate Bridge, to writing FDA regulations, to forming community advisory boards with pharmaceutical companies.
Their victories are stunning. In 1981, all we knew was a new disease began affecting otherwise healthy, young gay men. It was clear soon after it affected others as well. By 1985 the cause was known. In 1987 the first drug (AZT) was approved. Today we have over nearly 30 different treatment options. Where once ddC was approved based on its ability it keep people alive for 6 months longer than a placebo, some now feel people with HIV can begin to expect normal life spans.
The victories go well beyond the pharmacy shelves. The Ryan White Care Act -- a remarkable piece of legislation that provides care and treatment services for people living with HIV throughout the US, particularly those most vulnerable due to economic and political inequality -- is emblematic of the work done in those halls of power. There are countless others.
Of course there is much work still to do. That is the work of today's activists, and my experience at a recent event in Montana highlights this. I was invited to give a couple of workshops at the recent Rising Hope Retreat for people living with HIV and their partners. I gave my current treatment update for the entire group. Throughout the weekend I talked informally with many of them about their situations. Two stories stand out.
The first was a guy who approached me after my first talk. He had been taking Sustiva and Combivir for about two years and had a very difficult time with side effects. Fair enough. His doctor's approach? Put him on Combivir alone! He wanted to know if this was okay. Uh, NO! I was clear that it is never my job to tell people what they should and shouldn't do. But taking Combivir alone is not considered appropriate treatment -- by the Federal Guidelines, or just about anyone else.
The second guy was taking unboosted Crixivan (three times a day on an empty stomach) with Zerit and Epivir. That might be okay if it were 1997, or if he didn't have significant facial wasting or peripheral neuropathy. But none of that is true.
This should not be read as a sweeping indictment of the HIV medical care providers in Montana. It simply illustrates the need for further activism and vigilance.
I say all of that to salute all of the activists who came before me. These types of stories have always lit fires for activists to put out. And at the risk of organizational immodesty, I would like to praise one in particular -- Project Inform's Martin Delaney.
Marty is one of the founders of the AIDS activist movement. As chronicled in Jonathan Kwitney's book, Acceptable Risks, responding to the failing health of his partner and friends, Marty took action. This model of direct action in the face of despair became the driving principle of this budding movement in the mid-1980s.
He began as a drug smuggler, carting experimental HIV treatments in from Mexico at a time when the FDA dragged its heels even as the scope of the epidemic started to become apparent. Marty was not living with HIV himself, but nonetheless had firsthand experience with the very real and personal cost of bureaucratic indifference. The FDA, under the negligent watch of the Reagan administration, was no friend to people with AIDS. It was up to these burgeoning activists to enact change.
Marty started Project Inform as a six-month project in 1985, and soon became like many (or most others) in the field an accidental expert in the nascent area of treating HIV. As word spread that Marty and others were amassing what little was known about possible treatments for HIV, calls for this information overwhelmed his home phone. Project Inform's hotline grew out of this need, beginning in his own garage. Today our toll-free National HIV/AIDS Treatment Hotline provides much needed information and support to people infected and affected by HIV throughout the US.
From those humble early days, Marty helped build Project Inform into a leading national HIV treatment and public policy information and advocacy organization. I have been fortunate to work alongside him for the past 6.5 years -- first as a trainer, then as a rookie treatment writer, and now advocate.
Marty is now semi-retired ... with an emphasis on the semi. There's little chance you will find him on the golf course or playing shuffle board in Miami. He is still working as hard as ever to end this epidemic, dedicating this phase of his work to promoting cure-based research.
It is truly humbling (and, I confess a bit anxiety provoking) to follow in his footsteps -- along with Brenda Lein, Ben Cheng and the many other brilliant activists who have worked here at PI. Without Marty's leadership and mentoring, I wouldn't be half the advocate I am today. Without Marty's leadership in the fight against AIDS, I don't know if I would be here today.
As much as he might want us to, Project Inform cannot let Marty go too quietly. We are hosting two events to honor his vital contributions to the fight against AIDS -- one each in San Francisco and Washington, DC. (You can read more information about these events.)
Marty would be the first to acknowledge that he is but one of many important movers and shakers in the fight against HIV/AIDS. Their work has brought us much progress, but as those two stories show, there's much still to do. Perhaps the best way to honor him and all the others, who battled the scourge of HIV/AIDS, is to continue the fight until we find the cure.
We have a national, toll-free treatment Hotline, staffed by volunteers, most of whom are people living with HIV/AIDS. 1-866-HIV-INFO. We are open M-F, 10-6 Pacific Time.