Guest Opinion: Betrayed by our advocates

  • by Hank Trout
  • Wednesday January 22, 2025
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Hank Trout. Photo: Courtesy Hank Trout
Hank Trout. Photo: Courtesy Hank Trout

Mark S. King's January 10 blog post on his award-winning "My Fabulous Disease" site made me aware of a new, and troubling, development in the class action lawsuit against pharmaceutical behemoth Gilead Sciences Inc.

For background: Gilead is one of the primary pharmaceutical companies manufacturing and marketing anti-HIV medications. One of those, Truvada, was very effective at controlling the virus, but it also caused horrible side effects, damaging the liver and attacking bone density. Gilead's own studies confirmed that "an estimated 16,000 people would die, and 150,000 people would suffer kidney and bone injuries over a nine-year period," as King wrote.

Meanwhile, Gilead was also developing another drug, Descovy, which was just as effective as Truvada but did not have the same side effects. Gilead chose to continue marketing Truvada for nine years, despite knowing that it had an equally effective, less harmful drug to replace it, knowing that patients were suffering kidney damage and loss of bone density.

King again, "[P]eople with HIV taking the original drug suffered through broken bones and hip replacements and kidney complications. Oh, and some of them died."

Gilead clearly put profits over people by continuing to market this damaging medication, knowing it had an equally efficient, less harmful alternative. That is unconscionable. As King quotes acclaimed HIV/AIDS activist Peter Staley, "This is a level of evil we have never seen."

Although this inexcusable action by Gilead affects all people with HIV, it is perhaps us long-term survivors of HIV/AIDS who have lived with the virus for 20, 30, 40 years, or more, who are more likely to have taken Truvada and, thus, to be suffering the consequences. I am a 36-year AIDS survivor who took Truvada for about 10 years, who now suffers from advanced osteoporosis. I know several other men who took Truvada at about the same time who have suffered similar or worse physical damage traceable to the drug.

As if to add insult to injury, literally, comes a new development in the class action suit seeking compensation for patients who suffered liver or bone damage from the years they took Truvada. Over 24,000 patients have joined a class action suit seeking compensation from Gilead for the damage to their bodies they have suffered.

On November 25, 2024, some half-dozen current and past leaders in the community signed on to an amicus ("friend of the court") brief in the case in support of Gilead and against the plaintiffs. Let me repeat, well-known people in the HIV community who have been acclaimed and rewarded as "leaders" in the fight against the pandemic just endorsed a predatory pharmaceutical company over the patients that company has damaged or killed.

If that feels like a punch in the gut, good. It should.

Worse still, when King contacted these leaders to ask about their joining the amicus brief, some ignored his attempt to contact them, some responded but declined to comment, one responded with a response that could have come directly from Gilead's attorneys, and one, longtime AIDS advocate Phill Wilson — particularly egregiously — responded with a mea culpa tempered by asserting that he didn't have or take the time to do due diligence on the lawsuit.

Perhaps this shouldn't surprise me as much as it does. As King and others have pointed out, "Big Pharma" has attempted to co-op activists and clinicians in the HIV community. As King put it, "From grassroots activists to clinicians to public health workers to more than one White House AIDS czar, our community talent pool has been depleted by a hiring spree pharma has been on for years. It is a strategy that puts our friends and former co-workers on the other side of the equation, blurring the line between advocacy and commerce."

I cannot help wondering whether this fiasco, this blatant betrayal of us HIV patients, could have been avoided if only Gilead had talked with members of the community before it made the decision to withhold Descovy. I'm pretty damned certain that if Gilead had told us that they had a better, safer drug to fight HIV, we would have loudly shouted, "Hell yes, we want the safer drug!"

This is just one example of supposed leaders and allies in the HIV fight choosing to ignore the needs of us patients. It is this kind of neglect that led writers of both the Denver Principles and the San Francisco Principles 2020 to declare "NOTHING ABOUT US WITHOUT US!" When we are left out of the conversation, we are left out of the solutions. Trite but true: if you're not at the table, you're probably on the menu.

King's gut-wrenching blog post explains this situation in greater detail, and I encourage you to read it. I will give him the last word here.

"And now some of our own community leaders have signed on the dotted line in defense of Gilead. This is infuriating. Our long-departed friends, the ones we marched beside and buried and mourned, surely are turning in their graves," King writes.

Hank Trout, a gay man, is a long-term AIDS survivor. King's blog can be found at marksking.com.

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