When José Olivares, 22, heard more than a year ago that there was a drug to prevent HIV, it was the high cost of the antiretroviral combination pill that stuck with him. Fifteen thousand dollars a year and $56 per pill, without insurance, was expensive enough to scare Olivares away from his doctor for a year.
The cost was also high enough to make it seem plausible when acquaintances suggested that Truvada (tenofovir/FTC) for HIV prevention was a scheme by the drug's maker, Gilead Sciences, to line its wallet at the expense of gullible and vulnerable communities of HIV-negative men.
"One specific person on Grindr told me that 'we should not be putting these meds' into our bodies because big pharma was taking advantage of us and poisoning us," said Olivares, who lives in Rialto, California. "The same person suggested that I would be better off taking a multivitamin to stay negative."
Olivares was a little skeptical, too, in the beginning. He worried about side effects, which can include kidney damage and bone-mineral density loss. But the high cost of Truvada, he said, "is why I believed some of these individuals."
And indeed, of all the challenges inherent in getting the HIV-prevention pill to the people who need it, cost is near the top of the list.
Advocates for the prevention method, known as pre-exposure prophylaxis (PrEP), have been quick to point out that there are multiple ways for people to get Truvada for free or nearly free. There are demonstration projects, Medicaid coverage without pre-authorization, Washington state's PrEP Drug Assistance Program and Gilead Science's Truvada copay card, among others.
But anger over pharmaceutical sticker shock -- going well beyond Truvada and PrEP -- fuels some of the most virulent strains of anti-science in this country and is undermining public health in very real ways.
Olivares' potential hook-up telling him that the real goal behind PrEP is Gilead profit was an isolated incident -- but such incidents have the potential to undermine the real science behind PrEP at a time when new HIV diagnoses have remained stubbornly high for more than a decade. And fear mongering by HIV groups isn't helping.
Indeed, as PrEP rolls out to the communities most affected by HIV -- young men like Olivares; African American women; trans women and young, gay African American men in the South -- so does this potential public health threat.
Welcome to the birth of PrEP denialism.
Lex Luthor in a Polo
To be sure, you needn't look far for evidence of pharmaceutical company greed.
In 2013, oncologists declared the costs of cancer drugs a "financial toxicity" for patients. This summer, I spoke to an Indianapolis cardiologist who was baffled by the spike in price of a common inpatient blood-pressure-modulating drug, from $200 a vial, to $1,200 a vial. And Gilead, when it released its hepatitis C cure Sovaldi (sofosbuvir), priced it at an astronomical $84,000 for a single course of treatment, or $1,000 per pill.
And notoriously, there's the recent case of Turing Pharmaceuticals, which bought the rights to an older, generic drug used to treat opportunistic infections in people with AIDS, and drove up the price from $13.50 a pill to $750 a pill overnight. Turing's CEO Martin Shkreli was like Lex Luthor in a polo, tweeting pictures of himself making finger guns with his head tilted to the side, like he thought he was big pimpin'. He told the press he had every right to raise the price of Daraprim, the drug in question, since it's a specialty drug, and said he was "taking one" for his stockholders by weathering the criticism. The incident prompted the hashtag #pharmagreed.
(Some may also note the irony that Turing's drug, Daraprim, is designed to wipe out parasites.)
From Activism to Conspiracy
None of this means that Sovaldi or Daraprim or oncology drugs don't work, though. The same is true for Truvada. Every clinical trial in which subjects actually took Truvada found that the medication, a combination drug that's been used for HIV treatment for years, is effective in preventing HIV transmission.
A new observational study of 657 men taking Truvada for HIV prevention at Kaiser San Francisco found that not a single person contracted HIV. That's a 100% effectiveness rate in a real-world setting.
Given PrEP's effectiveness, HIV activists have called Gilead on the carpet for the high cost of Truvada, and are watching to see if its price really does drop once the formulation hits generic status in 2021. (Drug companies have been known to patent different formulations, delivery methods and even colors to extend the life of a patent and prevent generics companies from selling a drug for steeply lower prices.)
That's legitimate criticism of drug prices -- as opposed to denialism leveraging furor at the high costs of drugs to instill suspicion of the drugs themselves.
Meanwhile, government officials in Washington, D.C., have spent hundreds of thousands of dollars to get the word out about PrEP to communities that need it most, and officials in San Francisco have spent hundreds of thousands more to help people who want Truvada to find a health plan that will make it affordable. Washington and New York states have created PrEP drug assistance programs that mirror the state AIDS Drug Assistance Program that puts crucial HIV drugs in financial reach of people diagnosed with the virus. There's also the Patient Access Network Foundation, which will cover up to $4,000 for Truvada to offset high deductibles, and the Gilead copay assistance program, which will pay up to $300 a month for out-of-pocket costs for the drug.
Nevertheless, PrEP's cost certainly does limit its availability as a go-to prevention method. A new study that modeled the rollout of PrEP in the U.K. found that PrEP would not be a cost-effective option unless the price of Truvada dropped substantially. One could argue that condoms, at a bit more than $10 per box, are a more economical and accessible solution; however, many argue that you shouldn't have to choose: you can use both.
But that's not what PrEP opponents like the AIDS Healthcare Foundation (AHF) are arguing. AHF has been a tireless opponent of PrEP as a public health solution.
This summer, I came across an AHF press release that accused Gilead of lying about its role in promoting Truvada as PrEP. AHF said that it was "pull[ing] back the curtain on the influence of Gilead money" in promoting Truvada.
First, a little context: At the outset, Gilead said that it didn't view PrEP as a "commercial opportunity," and it acted consistently by being initially reluctant to provide Truvada for clinical trials. The company has not released splashy advertisements for Truvada as PrEP, as it has for Sovaldi. But slowly that's changing. Jim Pickett, director of prevention advocacy and gay men's health at AIDS Foundation of Chicago and manager of the My PrEP Experience blog, said Gilead is "now cracking open the commercial door for PrEP ever so slightly."
But, apparently, that's not what AHF is upset about. It's upset about the community grants Gilead makes to HIV organizations for PrEP outreach, to the tune of many millions of dollars. These grants, it should be noted, often go to advocacy groups that also press Gilead to reduce the price of the drug.
"AIDS Healthcare Foundation (AHF) is speaking out about the underhanded influence of Gilead money in pushing the use of its AIDS treatment, Truvada, for pre-exposure prophylaxis (PrEP) for HIV prevention," the press release reads. "AHF believes the community grants and other such funding awarded by Gilead -- which some groups have used to run advertising of their own promoting PrEP use -- constitute a stealth marketing campaign that allows Gilead to bypass FDA oversight of its marketing statements."
"Stealth marketing." "The underhanded influence of Gilead money." "Bypassing FDA oversight."
Whether intended or not, those phrases are a dog whistle heard by people like the ones who warned Olivares off Truvada because of pharmaceutical greed. These are phrases that, while dramatic, seem relatively benign to the general public. But to the conspiratorially minded, the insidiousness of pharmaceutical greed negates the effectiveness of Truvada.
This is not advocacy. This is PrEP denialism.
From Drug-Price Advocacy to PrEP Denialism
Denialism, at its basic level, is not about holding pharmaceutical companies' feet to the fire over drug prices. It's a virulent strain of anti-science fear mongering that has fueled at least two other movements threatening public health.
Remember the measles outbreak at Disneyland last year? In 2000, the disease was declared extinct. But it has come back, largely due to parents who believe that vaccines cause autism.
Tara Haelle, a science journalist who specializes in vaccine reporting, repeatedly debunks the long-discredited vaccine/autism link in her writing. In return, she's often labeled a "pharma shill." She says anger at drug companies underpins a lot of anti-vaccine thinking.
"Distrust of pharmaceutical companies and profit motives is HUGE in anti-vaccine circles," she wrote me via email. "In fact, it's probably the dominant narrative above all others, or at least closely tied with 'toxic ingredients.' They often go hand in hand."
Seth Kalichman, a professor of psychology at the University of Connecticut, spent years studying people who claim that HIV is a hoax -- that HIV either doesn't exist or was manufactured by the government, and in either case, doesn't cause AIDS. What came out of that research is his book, Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy. Kalichman is also the editor of the scientific journal AIDS and Behavior. I asked him, too, if distrust of drug companies is part of AIDS denialism.
It's not a part, he said; it's a pillar.
"The drug companies and their profits, and the collusion between drug companies and the FDA -- that thinking holds up a great deal of AIDS denialism," he said.
According to Kalichman, here's how the thinking goes: A belief that HIV is a hoax and antiretroviral treatment causes AIDS also requires belief in a vast conspiracy between greedy drugmakers and malicious government agencies like the National Institutes of Health (NIH).
"And there are people like me, who do research funded by NIH," he said. "[To AIDS denialists] we're not bad people, but we're stupid. We've bought into it."
But Kalichman said that, as far as he knows, there hasn't been any research yet on whether the same conspiratorial attitude is being applied to PrEP and, if so, it could undermine PrEP use.
Medical Mistrust and Denialism
To be fair, Kalichman said, AIDS denialists are rare. But conspiratorial thinking and medical mistrust are more common -- and for good reason, especially in minority communities that the medical community has alternately exploited and abandoned.
"If you're African American and living in the South, where they've had, oh, 150 to 200 years of reasons to not trust the health care system and the government, this is not a small problem," he said. "The legacy of medical slavery experiments and the Tuskegee [syphilis] studies, and the fact that, in virtually every disease, we have very broad health care disparities in which African Americans are dying sooner and poorer -- all of this stuff feeds into the reality that, yeah, it's going to be hard to convince people to trust."
Southern states have been slowest to expand health care access through Medicaid under the Affordable Care Act. Perhaps relatedly, the South is now the epicenter of the HIV epidemic.
Distrust is not in the past. I asked members of the PrEP Facts Facebook group to share examples of conversations they'd had with people exhibiting this mindset. I got a dozen replies, often with screenshots of conversations on Grindr or Scruff that mirror Olivares' experience.
Potential hookups told members that Truvada is a "poison" (it isn't), that Truvada can cause lipodystrophy (the redistribution of fat to the neck and into a so-called buffalo hump on the back -- it can't) and that "they have an AZT/DNA terminator drug mixed into the batch and will make you age faster" (they don't).
One guy told a PrEP Facts member, "I have issues with pharmaceutical companies making us believe we have to live a quality life off their creations that are given the stamp of approval by deceptive FDA puppets."
To another guy, someone said, "That's a new drug, something else will go wrong with it, just like flu shots. You're injecting yourself with HIV a little every day."
(It's not a new drug -- it's been prescribed in combination with other HIV medications for years to people who already have the virus. It contains tenofovir and emtricitabine, two antiretroviral medications, not HIV.)
Fighting for Their Lives
I will no doubt be branded a pharma shill for saying so, but Truvada is not the problem here. And it also may not be the ultimate solution, as researchers investigate topical microbicides for the vagina and rectum, which are expected to cost much less than Truvada.
But until that happens, we can't afford to ignore either the high price of Truvada or the denialists who highlight Truvada's cost to undermine an effective HIV prevention option. PrEP denialism is no truer than anti-vaccine and AIDS denialism, but every bit as potentially harmful.
The solution isn't a blanket anti-science approach to HIV prevention. It's to double down on science education. Kalichman points out, I think rightly, that people who don't understand how to read clinical trials are more likely to struggle to weigh the pros and cons of this prevention option. And in that knowledge gap, frustrations with the cost of health care can morph from gut-level distrust to conspiracy theories.
It's the science, after all, that turned Kalichman from a PrEP skeptic to a supporter. He was convinced that embedding HIV-negative tissue with medication, as Truvada does, wouldn't be enough to prevent HIV transmission.
"Well, I was wrong," he said. "Boy. You have to really be in denial to not buy the data, if you understand the data. And I think that's a big issue. The average person on the street isn't aware of how data works."