My Fabulous Disease
Should AIDS Activists and Pharma Just Get Along?
A Video Blog
By Mark S. King
July 5, 2011
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.
Episode 34: Should AIDS Activists and Pharma Just Get Along?
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It's very possible that my attitude here is outdated.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.
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Comment by: jab
Thu., Jul. 28, 2011 at 7:58 pm EDT
Of course, pharma companies are trying to make a profit, but so what? You expect them to research new treatments for free? I'm politically very liberal, and definitely want universal health care, but count me out on the "big-pharma" bashing... I guess that puts me the Andrew Sullivan camp. I have an undetectable viral load with zero side effects and only $15/month copay for my meds...
Where I would like to see more activism is on access to treatment for those who don't have insurance or are in the developing world. But I'm not going to bash "big pharma" for all of the economic inequalities in this world that lead to denial of treatment.
Comment by: Drew(Sydney AUS)
Tue., Jul. 26, 2011 at 3:47 am EDT
I'm glad I live in Australia with REAL Universal Health Care.
Cheers from Sydney, Australia
p.s. Love the Blog
Comment by: steve
Sat., Jul. 16, 2011 at 8:25 pm EDT
this is disgusting - 'what's the other part of it'? are you kidding? They're biggest concern is keeping us aaaaaallll "customers", and these "advocates" are nothing but salespeople for Pharma conning the VICTIMS of HIV into thinking they're mere 'consumers' - this is a deadly disease that is on the loose and is being used to profit these pharma companies who the very energy from the community that would otherwise go towards demanding a cure by using these 'advocates' - NO MORE!
Comment by: Anonymous
Thu., Jul. 14, 2011 at 1:18 pm EDT
Try sitting in on an ADAP steering comittee meeting and suggesting that pharma help out with increased rebates or lower prices. Crickets and stares. They are for profit entities and EVERYTHING they do is to make as much profit for as long as possible...don't be fooled by dinners and smiles.
Comment by: Layne K.
Sat., Jul. 9, 2011 at 11:06 am EDT
Thank you for your video Blog. You made a couple of good points.
1. There are other drugs the pharmaceuticals have where there isn't strong activism.
2. I applaud the pharmaceuticals' for stepping up to the plate during the ADAP crisis
My concern is what's the deal with all this confidentiality at play with the pharmaceuticals. They not only make individuals Sign but the states as well. What about transparency. I've attended a couple of webinars and asked the same question and the answer I got, Was its standard practice!
that's not an answer that sets well with me.
Comment by: Donald B
(Iowa City, Iowa)
Fri., Jul. 8, 2011 at 10:48 am EDT
I've never been under the illusion that drug companies were our friends--they've licensed innovations that have largely been paid through tax dollars and privately funded research and for that I'm grateful. They're still leeches and Abbott is the worst one in my humble opinion.
Replies to this comment:
Comment by: Anonymous
Thu., Jul. 14, 2011 at 2:59 pm EDT
Abbott is the most blatantly hostile. I almost prefer their approach of "screw you" vs. "let's get along and work together while I stab you in the back" approach used by the others.
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