The Truvada lawsuit hits POZ

The spin has begun.

I was alerted to a piece in POZ magazine, HIV Drugmaker Gilead Delayed Newer Version of Tenofovir to Extend Profits. The timing of this piece cannot possibly be a coincidence, given that it appeared a mere five days after the New York Times broke a near complete five year silence in the mainstream media regarding the lawsuits I have been covering on this substack for the past year. From POZ, today:

It appears the HIV activists were right. For over a decade, they’ve accused HIV drugmaker Gilead Sciences of delaying the development of a newer, and possibly safer, version of tenofovir, which is included in several blockbuster HIV drugs, such as Truvada and Atripla. The pharmaceutical giant denied the claims and continues to do so. But according to The New York Times, internal documents show that Gilead did in fact utilize a “patent extension strategy” to maximize the older drug’s monopoly and profits.

And further:

“There’s something profoundly wrong that happened here,” Christopher Morten, a pharmaceutical patent law expert at Columbia University, told the Times. “The patent system actually encouraged Gilead to delay the development and launch of a new product.”

Morten had provided pro bono work in a 2019 lawsuit in which HIV advocates claimed Gilead delayed the release of newer meds, saying that a proportion of people with HIV who took the meds developed kidney and bone problems, such as osteoporosis (the newer version doesn’t cause these side effects). They lost the case. 

According to the Times, in the course of other HIV-related cases against Gilead, lawyers unearthed internal documents about the purposeful delay of the newer med, including a 2003 memo regarding “tenofovir exclusivity extension.” 

It’s not quite true that TAF “doesn’t cause these side effects”; see for example lawsuits for the TAF based drug Genvoya.

This abrupt turnaround is fascinating, since the first lawsuits were filed in 2018 and there has been a near total media blackout on the issue. In fact, the situation is a great deal worse, given that there have been multiple mostly successful attempts to censor advertisements for the lawsuits, and there is a “paper trail” a mile long regarding these attempts. Here are just a few:

From Fierce Pharma, “Facebook yanks misleading HIV lawsuit ads after protest, headlines, and fact check”:

Facebook yanked ads trolling for HIV drug plaintiffs after LGBTQ, public health and HIV/AIDS prevention advocates argued the law firm promos were not only misleading but also endangering public health.

More than 50 groups co-signed a letter urging the social media giant to pull the ads from its Facebook and Instagram platforms and address the misinformation it was spreading.

The law firm ads encouraged patients using Gilead Science’s Truvada to reduce the risk of contracting HIV—so-called pre-exposure prophylaxis (PrEP)—to join personal injury lawsuits over alleged side effects.

The letter triggered widespread headlines, and Facebook decided to remove some of the ads after an independent fact-checking review found them misleading. 

RELATED: Gilead, LGBTQ community ask Facebook to remove misleading PrEP ads

Gilead had applauded the organizations standing up for their communities. “We join calls to have any misleading advertisements related to Gilead’s HIV medications removed from Facebook," Gilead SVP Amy Flood said in a December statement to FiercePharma.

According to the latest news reports, LGBTQ organizations led by GLAAD originally notified Facebook of the problematic ads in September. It wasn't until after an open letter was published in December and more widespread media coverage began that Facebook decided to call in the independent fact-checker, according to the Washington Post.

In an assessment published December 24, Facebook fact-checking partner Science Feedback concluded that the ad overstated the risks in taking Truvada for PrEP.

Independent fact-checkers found “some of the ads in question mislead people about the effects of Truvada,” a Facebook spokeswoman told the Washington Post, and added that “as a result, we have rejected these ads and they can no longer run on Facebook.”

From PBS, in January 2020, “How to spot deceptive drug injury ads like the ones Facebook just disabled”:

Some ads can be more than misleading – they can put your health at risk.

Last year, ads paid for by law firms and legal referral companies started cropping up on Facebook. Typically, they linked Truvada and other HIV-prevention drugs with severe bone and kidney damage.

But like a lawsuit, these assertions do not always reflect the consensus of the medical community. They also do not take into account the benefit of the drug or how often the side effects occur.

On Dec. 30, Facebook said it disabled some of the ads after more than 50 LGBTQ and HIV/AIDS groups signed an open letter to Facebook condemning them for “scaring away at-risk HIV negative people from the leading drug that blocks HIV infections.”

Based on our research involving televised drug injury ads, advocacy groups are right to raise the alarm about how these ads might affect important health decisions.

From The Guardian, “Facebook removes false HIV-prevention ads after LGBTQ+ outcry”:

Facebook has quietly removed false and misleading ads about HIV-prevention medications after months of pressure from LGBTQ+ and health organizations.

Fifty organizations including Glaad and PrEP4All started a public campaignin December, arguing that the social media platform was putting “real people’s lives in imminent danger” by refusing to remove targeted ads containing medically incorrect claims about the side effects of HIV-prevention medications such as Truvada.

From AIDSmap.com in July 2020, “Truvada lawsuit ads are prompting some young people with a high risk of HIV not to start or discontinue PrEP”:

Media adverts from 'ambulance chasing' lawyers spreading misinformation about Truvada and encouraging people to join a lawsuit against its manufacturer have resulted in young people at high risk of HIV not starting PrEP or switching to alternative methods of HIV prevention, according to research presented to the 23rd International AIDS Conference (AIDS 2020: Virtual).

The combination of tenofovir disoproxil fumarate (TDF) and emtricitabine in an oral tablet is marketed as Truvada. It is a longtime mainstay of antiretroviral therapy and is now widely used in HIV pre-exposure prophylaxis (PrEP). The adverts emphasised the possible association of Truvada(specifically, TDF) with bone loss and kidney damage. These are known but generally manageable side effects of the drug and rarely seen in PrEP users. The adverts encouraged people who had taken Truvada who believed they had experienced side effects to join a lawsuit against the manufacturer Gilead Sciences, highlighting the prospects of a cash payout.

A case was first brought against Gilead for alleged TDF-related harm in May 2018, the plaintiffs alleging that the drug company delayed the development and marketing of an alternative tenofovir formulation (tenofovir alafenamide, or TAF) in order to maximise profits from Truvadabefore its patent expired.

From International Trial Attorneys Association in March 2020 (emphasis mine):

Pharmaceutical company Gilead Sciences, Inc. was accused by the U.S. government of using “malicious, wanton, deliberate, consciously wrongful, flagrant, and.. bad faith” business practices to make money off people suffering from HIV. Based on their actions, this characterization rings true. 

Over the past years, Gilead has faced a broad variety of lawsuits and criticism regarding its HIV drug, Truvada. Patients have claimed they weren’t warned about the life-changing, harmful side effects associated with the drug, and the government has claimed Gilead failed to acquire the licenses required to use Truvada patents owned by the Centers for Disease Control and Prevention (CDC). Because of this, lawmakers have questioned Gilead’s reasoning for the incredibly high price of the drug.

While Gilead has donated medication and funds to support the fight against HIV, their positive efforts are a rounding error compared to its profits from Truvada. Gilead currently makes $3 billion in profits yearly from the sale of Truvada alone. Now, as lawyers are trying to notify victims of their right to compensation, Facebook has begun removing ads marketing the lawsuits against Gilead.

[…]

Facebook began quietly removing ads marketing lawsuits against Gilead from its platform last month after they received complaints from health experts and LGBT organizations. According to concerned parties, the advertisements lacked context and shared misleading information.

The problem with the ads, according to those concerned, is that they suggested the risk of kidney disease and loss of bone density was the same for patients taking Truvada preventatively as it was for those taking the drug to treat an existing HIV infection. LGBT advocates felt this advertising would discourage HIV-negative patients from taking Truvada as a preventative measure.

From Jason Rosenberg at The Body:

Before COVID-19–related news flooded our timelines in 2020, I’ll never forget the sponsored posts that read, “Breaking News, Truvada Side Effects: Compensation for Truvada Victims.” These were anti-PrEP ads, promoted mostly via Facebook and Instagram, targeted disproportionately toward people who would benefit most from PrEP.

As a member of ACT UP New York and co-founding member of PrEP4All―both organizations that fight to protect people from acquiring HIV―I talked with my colleagues about the harm this would have on new PrEP initiations but didn’t know what steps to take next. That changed after TheBody’s then-editor Mathew Rodriguez showed the real danger of misinformation for our community in his story, “Those Truvada Lawsuit Ads You See Everywhere May Hinder Public Health Efforts.” As Rodriguez revealed, alarmist language and the rampant spread of misinformation can, will, and does deter progress in HIV prevention.

Months later, a coalition of over 50 LGBTQ+ groups penned an open letter to Facebook urging the $320 billion dollar company to take down these ads. We wrote, “The advertisements are targeting LGBTQ Facebook and Instagram users, and are causing significant harm to public health. … By allowing these advertisements to persist on their platforms, Facebook and Instagram are convincing at-risk individuals to avoid PrEP, invariably leading to avoidable HIV infections. You are harming public health.”

Weeks later, it was reported that Facebook removed “some—but not all—misleading preventive HIV drug ads.”

And my personal favorite—here is an excerpt from the abstract of a journal article in JAIDS from 2021, “Effect of Truvada lawsuit advertising on PrEP attitudes and decisions among sexual and gender minority youth and young adults at risk for HIV” (emphasis mine):

In 2019, US advocates reported misleading language regarding the safety of TDF/FTC (Truvada®) used by lawsuit advertisements against Gilead Sciences. We sought to ascertain the reach and effects of the advertisements on PrEP opinions and decisions in a cohort of youth and young adults at-risk for HIV.

[…]

The advertisements reached a large, diverse US audience. Disturbingly, 18.7% of PrEP candidates who were aware of the lawsuit attributed not initiating or cessation of a Truvada-based PrEP regimen to exposure to the Truvada lawsuit advertisements.

Also, in the POZ story from today, there is even a link to a piece written by someone who himself was harmed by TDF:

And for a first-person account of one man’s experience with the effects of osteoporosis, check out this 2010 POZ blog post “Did Gilead’s Viread Break My Ankle?” from POZ founder Sean Strub.

There are plenty more personal stories. For just a few, please refer to my podcast on the Truvada disaster , as well as to the stories of nineteen victims in my piece from June .

The complete about face that has happened regarding these lawsuits is at once both shocking and entirely predictable. All of a sudden, the “HIV activists were right” about Gilead.

My question is: Which activists, exactly, were right? The ones that sponsored letter writing campaigns and protests to have the Truvada lawsuit ads scrubbed from the internet? Where were these “activists” for the past five years, while entire organizations of “activists” were coordinating a mass censorship campaign?

Oh, never mind. These were the same activists, as far as I can tell. They are certainly involved in the same activist organizations. They’ve just done a complete 180 in the wake of the NYT piece, hoping to spin the story—which is already out of control—in a way that doesn’t make them look like they have egg on their faces. But the footprints of the censorship campaign are hard to erase, and I won’t be letting anyone forget about it anytime soon.

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