Ever since Truvada has been approved as pre-exposure prophylaxis (PrEP), meaning the use of antiviral drugs as a strategy for the prevention of HIV, it has gained increasing popularity across the globe—from the U.S. to Britain to Taiwan—and has been hailed as the ultimate method to combat the HIV epidemic and prevent new infections. For the past few years, criticism of the manufacturer and distributor of Truvada, Gilead Sciences, has remained relatively mild and did not slow down the surge of its products’ proliferation.

A recent lawsuit, however, filed by 41 Truvada patients who claim to have suffered damage to their kidneys and bones as a result of the drug, seeks to hold the California-based Gilead accountable and casts doubt over the company’s ability to continue its operations unimpeded.

The 41 plaintiffs, who come from 12 different states, have been using the Truvada either for HIV treatment in the form of tenofovir disoproxil fumarate (TDF) or as a preventative measure through the PrEP medication. All of them have sustained kidney damage and/or bone density loss upon sticking to a daily regimen of Truvada.

The lawsuit, launched by HIV Litigation Attorneys and funded by the AIDS Healthcare Foundation (AHF), was filed in the Superior Court of the State of California for the County of Los Angeles. On the firm’s website, HIV Litigation Attorneys declare they seek to hold Gilead accountable for its “failure to adequately warn about Truvada side effects, marketing a drug with design defects and stalling the development of a safer version of the HIV treatment in order to maximize profits”.

The severe and highly-dangerous side-effects associated with a fixed-dose administration of Truvada have been known to Gilead since 2001. Yet, while the company issued repeated warnings about Truvada’s side-effects in the EU, it omitted such information from its prescriber and patient labelling in the U.S. All the while, Gilead has been actively suppressing a safer alternative it developed to TDF, tenofovir alafenamide (TAF), in order to maximize profits off of TDF.

“We need to make sure pharmaceutical companies take patient health and safety into consideration in its business decisions”, Liza Brereton, attorney for the plaintiffs at HIV Litigation Attorneys and counsel for AHF, told Screen Shot, “You would think they always do this, but far too often, big pharma makes decisions to maximise profits over ensuring access to the best medications”.

Gilead’s profiting off of Truvada has come under scrutiny long before the lawsuit was filed, particularly since the funding for its research relied on $50 million of taxpayers’ money. According to the Washington Post, in 2018 alone Gilead raked in $3 billion in sales from Truvada. Averaging at $1,600 to $2,000 a month if taken daily, Truvada remains unaffordable to a great number of Americans who are either uninsured or whose insurance plan does not cover the drug. Truvada’s prohibitive cost has meant it was least accessible to some members of the Black and Latinx queer community, despite the fact that the HIV epidemic concentrates primarily in their communities.

Commenting on the law firm’s agenda with its lawsuit, Brereton stated that, “In addition to fully compensating people who have been injured by Gilead’s decision to release the inferior TDF-drugs over the TAF-drugs, we would like Gilead to allow production of generics of its TAF-based drugs, which should have been released to the public years ago. Branded TAF is too expensive and Gilead should not be able to profit off this decision that hurt patient health”.

This begs the question—in lieu of safe medication available on the market, how can we continue to promote HIV prevention, both in our communities and on a large scale?

“Condoms are an effective way to promote HIV prevention and prevent the spread of STDs”, says Brereton, “ No HIV prevention drug prevents other STDs and no drug on the market is safe for long term consumption as a prevention mechanism. Keep in mind even Truvada as PrEP was approved by the FDA for use in combination with condoms”.

Brereton adds that “Gilead should have investigated and studied TAF as a preventative many years ago.  They should get that done to see if it is effective as an HIV preventative because it is safer for patients’ kidneys and bones than TDF”. If we were to take a closer look, however, we would realise that the problem isn’t only Gilead’s unscrupulousness, but the fact that we look for a pill to solve an extremely complex and multi-layered issue.

There is no doubt that Gilead must be held accountable for its criminal and reckless behaviour—something that would hopefully set a precedent for other big-pharmas as well. Yet, in order to truly eviscerate the HIV epidemic, we must first address core issues such as systemic racism, queerphobia, economic disparities, and unequal access to quality education, housing, and healthcare.

It seems that by relying exclusively on medicinal solutions, we search for a quick fix for a problem that permeates all aspects of our society, one that would require extensive structural, social, and political overhauls to be rectified.

It was over a year ago when I met Shawn for a Grindr ‘date’ at his dimly lit, quaint Bedstuy brownstone on a snowy November night. Things escalated quickly, and with my clothes already dangling off the edge of his bed, I whispered the common chant into his mouth “Neg on PrEP, are you?” Shawn backed away suddenly and with a somewhat cautious expression replied “Poz undetectable… is that OK?” As the words came out of his mouth a zap of panic flared up in me; a dormant, familiar fear that needed but a tug to rise to the surface and effervesce. Yet this fear was mixed with an overwhelming sense of shame at my reaction, and an understanding of how little knowledge I have of the issue.

Last month, the National Institute of Allergy and Infectious Diseases (NIAID) (a branch of the National Institutes of Health), published a new document which reviewed numerous studies from the past several years and has “firmly established the HIV Undetectable = Untransmittable (U=U) concept as scientifically sound.” As reaffirmed by the study, people who live with HIV and adhere to a daily regimen of antiretroviral therapy (ART) can maintain an undetectable load of the virus in their bloodstream. Studies reviewed by NIAID Director Anthony S. Faucy, M.D, indicate that such individuals are unable to transmit the virus to their sexual partners. While the scientific validity of the U=U concept may not be news, it still evades large swaths of the general population.

For the remainder of our affair (which consisted of about four meetings—practically a marriage on Grindr terms), Shawn has shared with me his experience of dating as poz-undetectable, and has opened my eyes to the prevalence of poz-phobia in the queer community. Suddenly I realised, it was everywhere; at clubs, in conversations with friends… and most definitely on Grindr. “People would be like ‘oh, nevermind’ when I tell them I’m poz undetectable,” said Shawn, “Many of them would just block me immediately. It sucks, but I’ve kind of been getting used to it. I took it off of my profile, though, hoping they would react differently if they get to talk to me first before I tell them.”

As Shawn iterated in our meeting, it comes down to education, or lack thereof. And in that sense, I’m as guilty as they come. I don’t believe that at this point in time one should reach their late twenties with such little knowledge of the history, facts, and science behind the HIV pandemic, and I don’t believe that it should take a random hook-up with a poz person to acquaint one with such information.

As millenials, we were brought up on the foothills of the trauma and pain which characterised the height of the HIV/AIDS epidemic. We grew up with stories about idols such as Freddie Mercury and Keith Haring who lost their lives to the disease, and testimonies of the older generation recounting how gay people were ‘dying like flies’ in the 80’s and 90’s.

By the time many of us reached sexual maturity, awareness of safe sex had begun to rise and increasing access to ART treatment prevented more poz people from transmitting the virus. The fairly recent emergence of PrEP has also begun to alter (and to an extent, liberate) the landscape of queer sex. Yet, these developments did little to root out discrimination towards people carrying the virus. Often, the lingering fear is not rational, as one can hear bits and pieces of ‘reassuring’ information, but still be overcome by their lifelong phobia of the virus.

It appears that the lack of concrete knowledge mixed with trauma, fear, and deep-rooted (often self-inflicted) homophobia brew a most lethal concoction, and provide an explanation to the ongoing, pervasive poz-phobia that taints our society.

But upon acknowledgement of the problem, comes the work. How, then, do we educate the public and make sure these facts and studies become widely known? Proper sex-education in schools, one that includes information about same-sex interactions, is incredibly important. Currently, such education is not available for the majority of teens across the U.S. According to the Human Rights Campaign (HRC), “Among Millennials surveyed in 2015, only 12 percent said their sex education classes covered same-sex relationships.” Yet, the tide may be turning, with public opinion gradually tilting towards inclusion of LGBTQ related-issues in the education system (one of which is HIV/AIDS), and advocacy groups working to incorporate them into the curriculum.

Sex-ed in schools isn’t enough, though. Seeing as a significant portion of the interaction between LGBTQ people takes place online (which is also where ignorance is manifested in the form of blocking, ghosting, bullying, etc.), it is important that such platforms make an effort to educate their users about HIV/AIDS. Kindr, an initiative launched by Grindr to make the app more inclusive, constitutes a first step in the right direction, albeit an insufficient one. This is not just about encouraging tolerance and berating those who are clueless or bigoted, but about familiarising people with basic science and giving HIV positive people a real opportunity to speak up.

It may take a while for the cloud of fear, stigma, and trauma regarding the virus to dissipate. Yet it seems that the beginning of this journey would have to be in the form of a thorough and expansive education campaign, consisting of both scientific findings and testimonies of people who live with the disease. Hopefully, tolerance will naturally emerge once people are introduced to the facts surrounding HIV/AIDS and the treatments available to contain and prevent them, and once we attach to this ‘viral specter’ a face, a voice, and some much-needed context.