Recently, I became aware of a very disturbing development in the class-action lawsuit filed by patients against the pharmaceutical company Gilead Sciences. Disturbing enough on its own, this development forefronts other issues that we long-term HIV/AIDS survivors and others living with HIV need to address.

Some background: Gilead Sciences is one of the primary pharmaceutical companies manufacturing and marketing anti-HIV medications. One of those medications, Truvada, was very effective at controlling the virus, and tens if not hundreds of thousands of us took the medicine for a long time. Unfortunately, Truvada also caused horrible side effects — it damaged the liver, leading to malfunction and even death; it also attacked bone density, leading to osteoporosis and other bone strength problems. Gilead knew all about Truvada’s side effects; their own research studies confirmed that an estimated 16,000 people would probably die, and 150,000 people would suffer kidney and bone injuries over a nine-year period. 

Meanwhile, Gilead was also developing another drug, Descovy, that was just as effective as Truvada but was far less harmful. Descovy, the new drug, was ready for development and marketing almost simultaneously with Truvada. However, Gilead chose to withhold Descovy and to continue marketing Truvada for nine years, despite knowing that Descovy is an equally effective, less harmful drug, knowing that patients were suffering kidney damage and loss of bone density. The reason? Gilead’s patent on Truvada allowed them the exclusive right to market and profit from that particular drug formulation before the law would permit generic versions of Truvada to be sold.

In other words, Gilead clearly put profit before people by continuing to market Truvada when they had a far less harmful but equally effective alternative. To quote Mark S. King’s January 10, 2025, blog on My Fabulous Disease, “[P]eople with HIV taking the original drug suffered through broken bones and hip replacements and kidney complications. Oh, and some of them died.”

It is my understanding that the judge in the class-action lawsuit has dismissed part of the claims against Gilead, ruling that a pharmaceutical company has no obligation to rush a new drug to market and that profit is a legitimate factor in making decisions about the marketing of medications. I understand that completely.

However, that does not exonerate Gilead from the intentional, negligent, unnecessary infliction of bodily harm on its patients. Putting their profit margins over the safety of their patients is simply unconscionable.

This intentional, negligent infliction of harm is particularly worrisome for us long-term HIV/AIDS survivors as we are most likely to have taken Truvada for long periods of time. My own experience with Truvada is merely one example out of tens of thousands. I am 72 years old; in my early 60s, I was diagnosed with osteoporosis (at a level of severity usually not seen until the patient is in his 80s). In recent years, I have had six compression fractures in my spine. Five of them have been corrected via a procedure known as a vertebroplasty, but the sixth one, because it is at the base of my spine, cannot be corrected. As a result, I have lived in constant pain for several years and will continue to experience constant pain until the day I die. And I am not alone.

Thus, the new development in the case against Gilead truly shocked me.

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 the predatory actions of a pharmaceutical company over the patients that company has damaged or killed. Talk about a head-spinning punch in the gut! What were they thinking?!

For me, this begs the question: How much have we allowed large pharmaceutical companies to co-opt the fight against HIV/AIDS? How much have we in the movement stood by and watched the predatory behavior of some drug companies go unremarked because we are afraid of losing the funding these companies provide? Have we allowed these companies free rein simply because they sponsor Pride events or walk-a-thons or conferences or dances? Should we ignore the harmful side effects of a particular HIV drug as long as the drug company continues to place full-page ads in our magazines and newspapers?

Quoting Mark S. King again, “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.” No matter whether they know it (or admit it), some of our community leaders have been co-opted by Gilead and other pharmaceutical companies. And when advocates make decisions based on fear of losing a pharmaceutical company’s funding, they’re bound inevitably to make the wrong decisions.

But the issue is bigger even than that. In both the Denver Principles and the San Francisco Principles 2020, patients with HIV have loudly declared “NOTHING ABOUT US WITHOUT US.” And yet, we are still excluded from discussions that profoundly affect our lives. For instance, I cannot help wondering whether Gilead would have held back Descovy and continued to market Truvada if they had asked even one of us patients about that decision. I know for certain that if Gilead had told me that they had a better, safer drug to fight HIV, I would have loudly shouted, Hell yes I want the safer drug!

Similarly, if these advocates who signed the amicus brief had asked any of us people living with HIV about signing on in support of Gilead and against us patients, again, I’m real damn sure that we would have raised enough stink to prevent their signing on. But when you’re left out of the conversations, you’re left out of the solutions.

For the longest time, it upset me that, after the advent of effective HAART medications, the medical community seemed to ignore us long-term survivors. Their attitude seemed to be, Hey! We saved your lives, what more do you want?! Now go sit in the corner and take your meds like good little boys and girls! But I’ve gotten used to heartless, profit-driven medical treatment. However, the fact of members of our own community, people whom the community has revered and rewarded and depended upon, proclaim their support for defendant Gilead in this case shocks and disappoints and infuriates me more than I can say. I guess it’s true — if you’re not at the table, you’re probably on the menu — and not everyone at that table is a true ally. Sometimes they will stab you in the back.

I know that Gilead and other pharmaceutical companies have given tons of money to people and organizations fighting HIV/AIDS and I hope that generosity continues. However, there are two things we must always remember.

  1. The money the pharmaceutical companies return to the community is just that — returned community money. Our money! If we HIV/AIDS patients didn’t pay the drug companies such exorbitant prices for our medications, they wouldn’t have so much money to give us. We should never forget that nor let the drug companies forget it.
  2. No matter how much money the drug companies return to the community, we can never let that money blind us to the companies’ bad behavior. Corporate generosity should never exonerate those companies from the harmful, negligent, deliberate infliction of pain and suffering on their patients or other bad actions. Anyone who looks the other way is a traitor to the community, not a “leader.”

As HIV/AIDS patients and advocates/activists, we need to be more adamant about insisting on full participation in the development and availability of the medicines we ingest. And we need to ask just what (or whom) the pharma companies are “buying” with their community donations and sponsorships.

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