I'm having an identity crisis. Am I an AIDS activist, ready to question authority and demand high standards of service for those living with HIV/AIDS? Or am I a "resource" for the pharmaceutical industry, so that they might craft more effective community programs that will lead AIDS patients "to care"?

And that care, no matter how they frame it or how sunny the smiles of their community liaisons, ideally would lead patients to their HIV drug product line.

In this video episode of My Fabulous Disease, I take you along to a community advisory board meeting (CAB) for HIV drug manufacturer Janssen Therapeutics, formerly known as Tibotec. There was something about the cordial way in which the invited HIV advocates provided helpful feedback to the pharmaceutical executives that felt ... a little strange.

Although I have agreed to keep the particulars of the meeting private, I will say that there were no fireworks on display -- or any real antagonism to speak of. We advocates ("activists" seems like too strong a word) offered our best advice to Janssen, they appreciated it very much, lunch was served, and everyone left happy.

And I felt as if I had failed somehow. I had allowed the topics to be entirely in the hands of our hosts, and any issues that deserved discussion but were not on our elegantly typed agenda -- educating patients about treatment risks, or, God forbid, drug pricing -- were never discussed. I didn't feel like much of an activist. I felt like a focus group member.

It's very possible that my attitude here is outdated. In the early days, we took to the streets because societal apathy and ignorance demanded it. We protested and threw red paint and otherwise shamed the pharmaceutical companies into better medications, broader access and more community involvement. Those battles were waged (and largely succeeded) many years ago, while pharma has come through with an astounding arsenal of successful HIV medications. What's wrong with some civil dialogue between us today, to progress our mutual interests? Why am I living in the past, being an activist without a cause?

Credit: ACT UP New York

Clearly, we have some common goals, chief among them HIV testing and access to treatment. And pharma has resources that community organizations could only dream of, so advising them on creating the best campaigns possible (to get tested, to "get into care") makes sense. So why was I so ambivalent?

Activism should make people uncomfortable. Just ask Larry Kramer. I watched the late, great Martin Delaney, founder of Project Inform, demand in similar meetings that more be done in terms of drug efficacy and proper data and experimental drug access. He made me very uncomfortable and I was on his side. Martin usually got what he wanted. And he wanted it for you and me.

At least through this video, I get an opportunity to discuss some pressing concerns not covered in the community meeting. I question some basic assumptions, such as whether our hard work on the ADAP crisis is pulling attention and resources from the "big picture" of pharma drug pricing and generics, and I offer an indictment of our U.S. health care system for good measure.

There are still confrontations to have and tough arguments to make, and the agendas of advocates and pharma alike should always be questioned.

It just might be a little uncomfortable.

Mark

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My Fabulous Disease

Mark S. King has been an active AIDS activist, writer and community organization leader since the early 1980s in Los Angeles. He has been an outspoken advocate for prevention education and for issues important to those living with HIV.

Diagnosed in 1985, Mark has held positions with the Los Angeles Shanti Foundation, AID Atlanta and AIDS Survival Project, and is an award-winning writer. He continues his volunteer work as an AIDS educator and speaker for conferences and events.

Speaking engagements: Mark King is available to speak to groups. Contact Mark about speaking at your organization or event!

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View an excerpt of Mark's book

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Interviews With Mark:

Mark King Looks Back at the AIDS Epidemic's Darkest Hour in the U.S. (May 14, 2008)

This Month in HIV: Crystal Methamphetamine and HIV (August 2007)

Articles by Mark:

Meth Burial (May 2008)

Once, When We Were Heroes (June 2006)

Outliving My Father (May 22, 2001)
Mark recounts how years of caring for friends dying of AIDS prepared him for taking care of his dying father
From The Advocate

AIDS Always Benefits from What We Don't Talk About (April 2001)


For the rest of Mark's articles, click here.

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