Brody's Scribbles... Should AIDS Activists and Pharma Just Get Along?

By Mark S. King | Fort Lauderdale, Florida -- 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It’s very possible that my attitude here is outdated.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 pharmaceuticals 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. Why does something deep inside me resist civil dialogue that advances our mutual interests? Am I living in the past, being an activist without a cause?

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 S. KING is an award winning columnist, author, blogger and AIDS advocate who has been involved in gay causes since the early 1980’s. After graduating the University of Houston, King pursued an acting career in Los Angeles and appeared in dozens of television commercials.

King began working for community AIDS agencies in 1984 as a volunteer, and joined the staff of the Los Angeles Shanti Foundation in 1988, becoming their first Director of Public Relations. In 1993 he moved to Atlanta to serve as executive Director of AIDS Survival Project, and later as Director of Education and Communications for AID Atlanta, the southeast’s largest AIDS service agency.

King has appeared as a regular spokesperson on ABC News, 48 Hours, CNN News and in The Wall Street Journal and The New York Times. His award-winning writing has been featured in The Advocate, Newsweek, The Washington Blade, and on TheBody.com web site. King has been honored for his writing numerous times, including the 2007-2008 National Lesbian and Gay Journalist Association’s award for best opinion piece of the year, for his essay “Once, When We Were Heroes,” about the early days of the AIDS epidemic. Mark’s video blog, “My Fabulous Disease,” is one of the most popular ongoing features of the TheBody.com, with viewers from around the world. 

Today, Mark lives with his partner Ben in Ft Lauderdale. He continues his writing and blogs, and awakens with gratitude (almost) every morning.