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Guest Opinion: Unsure whether I'll join Gilead lawsuit

by Hank Trout

Hank Trout. Photo: Courtesy Hank Trout
Hank Trout. Photo: Courtesy Hank Trout  

I have recently learned about a class action lawsuit instituted on behalf of people living with HIV who took one or more of Gilead's tenofovir disoproxil fumarate (TDF) drugs — Truvada, Viread, Atripla, Complera, and Stribild — and then suffered kidney disease and/or bone density loss.

The suit alleges that some 20,000 people with HIV have been diagnosed with kidney disease after taking TDF-based antiretroviral drugs. Studies have also shown that TDF drugs cause an increased risk of bone diseases and fractures. Thousands of bone breaks have allegedly been linked to the drug compound.

The basis of the lawsuit is that Gilead allegedly knew as early as 2001 that TDF could cause serious side effects. In 2002, it allegedly tested a new, less toxic formula — tenofovir alafenamide fumarate (TAF), now found in, and marketed as, Biktarvy, Descovy, Genvoya, and Odefsey — that works as effectively as TDF but uses a smaller, safer dose. The newer formulations have never been linked to the same risks as the earlier versions. The lawsuit alleges that the company intentionally delayed development and release of the safer TAF version so that it could continue to profit from its monopoly on TDF. The suit alleges that the company hid TDF's risks while earning billions of dollars as it became one of the world's most-prescribed HIV medicines, thus harming patients who could have benefited from the newer formulations.

I was diagnosed with HIV in 1989. Since the antiretroviral therapy (ART) cocktails were introduced in 1996, I have taken more different regimens of HIV meds than I can remember. But a glance at my medical records reveals that for nearly 11 years, from late 2004 through early 2016, my ART regimen included Truvada. And while I have had no problems with my kidneys (knock wood), I have indeed been diagnosed with advanced osteoporosis. In recent years, my bones have become extremely fragile. During 2018 alone, I had four compression fractures in my spine — the last one caused by simply bending over to tuck the bed sheet under the bed corner. I have also suffered three herniated discs near the base of my spine. I believe a darn good case could be made that the Truvada either caused, or at least has aggravated, those problems. I meet all the requirements for joining the lawsuit as a member of the class suing Gilead.

Over the years, friends of mine have listened patiently as I ranted about how horribly pharmaceutical companies have treated HIV patients whose lives depend upon their medications. I have posited that, since no one could accurately predict the horrendous immediate side effects of their ART drugs or the drugs' long-term effects on our bodies, all of us who have taken those drugs since 1996 have essentially been unpaid guinea pigs for Big Pharma. I have argued that instead of making us pay for these drugs, pharmaceutical companies should be paying us for letting them experiment on us. Gilead and other pharmaceutical companies have made billions of dollars from their experiments on us — it wouldn't hurt them to share their profits.

After all, even lab rats get fed now and then.

And so the litigious little devil that sits on my left shoulder keeps screaming at me, "Fill out those papers and mail them in! Get in on the action, you fool! You might be compensated for these years you've suffered!" I find myself reluctantly agreeing with him more and more.

And then ...

And then there's the prissy little goody-two-shoes angel sitting on my right shoulder, shaking his head and frowning disapproval at me.

You see, even if taking Truvada for 11 years did cause or aggravate my osteoporosis, I'm aware that for 11 years Truvada also kept me alive. The little angel on my right shoulder looks at the devil on the left, shakes his head in disappointment, and says to me, "You ungrateful, selfish little man! Gilead created a drug that kept you alive for 11 years, and this is how you show your gratitude — by suing the company over the side effects?! What is wrong with you?"

So here's the dilemma: Do I join the class action lawsuit and hope for a court settlement that results in compensation for the acute pain and suffering and injury that osteoporosis has already caused me and which will continue for the rest of my life? Or do I just let it go, remind myself that if it weren't for the Truvada I wouldn't be here contemplating this decision, and just content myself with being kept alive for all these years?

Suing the company whose drugs have kept me alive for so many years just doesn't feel right, like an example of "no good deed goes unpunished." It feels disrespectful and ungrateful.

But do I want to give the company a pass on that whole "first, do no harm" idea? And if Gilead's gains are ill-got, well, yeah, the company should relinquish some of those gains. If the class wins compensation, I can consider it payment for my services as a guinea pig and compensation for my injuries.

I've filled in and signed and dated all the forms and put them in the pre-paid FedEx envelope provided. Right now, I'm not sure what I'll do with it.

Hank Trout is a 39-year resident of San Francisco and a 30-year long-term HIV/AIDS survivor. A veteran activist, he is a senior editor at A&U: America's AIDS Magazine; http://www.aumag.org.

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