This is the story of the insidious influence of Big Pharma on our HIV/AIDS leadership and policy-making, and how an experienced activist like me was tricked into delivering messages for the HIV pharma giant Gilead Sciences.
I was bamboozled because I didn’t do my homework, and I acknowledge this. I relied upon institutions I trusted and causes that sounded great on paper. All the while, Gilead’s fingerprints were everywhere.
The only way for me to make this right is to apologize, first, for putting my name on a seemingly helpful editorial, “The struggle to maintain access to life-saving HIV medications,” (The Washington Blade, 2/22/2019), which also appeared on my blog as, “A Medicare Change Could Keep Us from Life-Saving HIV Medications,” a post I must now disavow.
This media outreach project, as it turns out, was bought and paid for by Gilead, and included specific messaging that benefits the marketing of their newer HIV drugs.
This is how it happened and who was involved. The chips can fall where they may.
In January 2019, I responded to outreach from AIDS United, a national HIV/AIDS policy, lobbying and funding organization, to participate in a media strategy they asserted would help people living with HIV (PLWH). AIDS United wanted to identify PLWH who have benefited from Medicare Part D; specifically, how that program makes life-sustaining HIV medications available to those of us who are on Medicare.
At the time, AIDS United was fighting a proposed federal policy change that would have placed restrictions on what medications those of us on Medicare Part D could access first, before being eligible for newer medications. The policy change was presented as an attempt to save taxpayer dollars, but AIDS United argued it could potentially limit the options of those who may need the newest medications.
AIDS United sought influential PLWH to write editorials to drive public opinion against the policy change. I agreed to participate but did not receive payment of any kind.
AIDS United then handed me off to Precision Strategies, a public relations firm coordinating the project. Since governmental policy isn’t my usual lane, Precision Strategies drafted the editorial and I added my own voice and biographical details.
Activism lesson: if it isn’t your lane, don’t pretend that it is. Activist Writer lesson: don’t ever allow your name to be pasted onto someone else’s writing. They might be sneaking in key messages for Big Pharma.
The finished editorial sounded really smart. It cited how people might perish if they were forced to rely upon generics before having access to the latest drugs. It even referenced a study that suggests as much. I never questioned the study referenced. I trusted the players involved. Ahem.
A few weeks after the piece was published in the Washington Blade and on my site, activist James Krellenstein pointed out to me that the study’s relevance to the Medicare Part D debate is highly questionable. The reason is a pharma marketing lesson that Gilead doesn’t want you to read or understand, but stick with me. Drama is coming.
The study takes a fantasy scenario and manipulates it for Gilead’s benefit. It imagines that, if every PLWH were forced to use Gilead’s older drugs (such as Truvada, Viread, Atripla, Complera, and Stribild), and they had restricted access to Gilead’s newer drugs (like Descovy or Genvoya), then over 16,000 people would perish.
Why, James asked me, would this study suggest that 16,000 people could die if they were forced to rely on the older drugs? Doesn’t that death toll sound severe? Would it, perhaps, have anything to do with the fact that Gilead’s older formulations, such as Truvada, are going generic and the newer versions make them a lot more money? Why did this study conjure up this fantasy scenario in the first place?
The reason is simple. Because the study was funded by Gilead, the maker of those older drugs as well as the new, more expensive alternatives. Had I read the study thoroughly, I would have seen that it notes, right there in the text, that Gilead paid for the research.
How did Precision Strategies come up with this obscure study to help make a case about Part D expansion? Because Precision Strategies doesn’t work for AIDS United. Nope. They work for Gilead Sciences.
It is amazing, really, how fear can drive the decisions of the very HIV organizations that were founded to empower people.
(A longer version of this op-ed appears at marksking.com.)
Mark S. King is a writer and blogger. Reach him via marksking.com.