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New patient-advocacy group ‘outed’ by Minnesota-based website as ‘Astroturf’ campaign

“It’s pretty clear after dissecting the activities of this new patient advocacy group that it’s advocating for more drugs no matter what the price, no matter how effective or ineffective they happen to be,” writes Trudy Lieberman.

Martin Shkreli, the founder and former CEO of Daraprim’s manufacturer, Turing Pharmaceuticals, was quickly labeled “the most hated man in America.”
REUTERS/Joshua Roberts

In recent months, the pharmaceutical industry has been hit with a steady stream of negative publicity about the high costs of prescription drugs in the U.S.

And the public finally seems to be paying attention.

Last fall came much-publicized accounts of how two companies bought drugs that had been around for decades — the tuberculosis drug cycloserine and the anti-parasitic drug Daraprim — and then promptly jacked up their prices. The cost of a single Daraprim pill, for example, jumped from $13.50 to $750.

Martin Shkreli, the founder and former CEO of Daraprim’s manufacturer, Turing Pharmaceuticals, was quickly labeled “the most hated man in America.” Yet, as many people have pointed out, exhorbitantly high drug pricing is really not that unusual in the United States.

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New hepatitis C drugs, such as Harvoni and Sovaldi, cost almost $100,000 for a single course of treatment, a price tag that has particularly strained state-run Medicaid budgets.

And late last summer, more than 100 oncologists from top cancer hospitals across the U.S. said the high cost of cancer drugs, which has risen five- to tenfold over the past 15 years, is unsustainable. They called on federal agencies, Congress and medical associations to take steps (such as allowing Medicare to negotiate drug prices) to bring down those exorbitant costs.

“High cancer drug prices are affecting the care of patients with cancer and our health-care system,” said one of the doctors, hematologist Ayalew Tefferi of the Mayo Clinic in Rochester. “The average gross household income in the U.S. is about $52,000 per year. For an insured patient with cancer who needs a drug that costs $120,000 per year, the out-of-pocket expenses could be as much as $25,000 to $30,000 — more than half their average household income.”

The pushback

All this attention on the high cost of drugs is, of course, worrisome for the pharmaceutical industry. So it’s pushing back. Hard. Earlier this month, the Pharmaceutical Research and Manufacturers of American (PhRMA) launched a new multimillion-dollar advertising campaign “to improve its reputation with lawmakers as it lobbies against any effort to rein in prescription costs,” according to the Wall Street Journal.

And to improve its relationship with the public, the pharmaceutical industry is turning to an old tried-and-true ploy: the fake, or “Astroturf,” patient-advocacy group.

In an article published last week on the Minnesota-based HealthNewsReview website, reporter Trudy Lieberman “outs” one such group, Patients Rising, along with its partner organization Patients Rising Now

“Like most Astroturf groups, its purpose [“to fight for access to vital therapies and services for patients with life-threatening diseases”] seems noble enough and its goals lofty,” writes Lieberman.

But in reality, she says, the group’s main goal is “to push against the developing meme of unaffordable drugs.” And, like other Astroturf groups (such as Even the Score, which last year successfully persuaded federal regulators that not approving the drug flibanserin for the treatment of “female hypoactive sexual desire disorder” represented gender inequity), Patients Rising does this under the guise of being a grassroots patient organization.

“Astroturfers gather ordinary citizens from the grassroots to advocate for various causes while in reality shilling for the trade associations, PR firms, corporations, and political organizations that set them up,” Lieberman explains.

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Funding sources unclear

Patients Rising, she reports, was founded by Jonathan Wilcox, a corporate communications and public relations consultant and adjunct professor at USC’s Annenberg School of Communications and his wife, Terry, a producer of oncology videos. 

The group intends to get its message out to the public “through workshops, webcasts at conferences, social media, and sharing patient stories, a staple of these groups,” she adds.

Patients Rising’s website provides no indication of who is paying for all these activities, however. So Lieberman called the group:

In a very brief phone interview Jonathan Wilcox told me the fight for access “is a cause worth fighting for,” especially against what he calls “widespread interference in the doctor patient relationship,” which he said had become “a patient crisis.” He said his group also opposes step therapy, a requirement which insurers impose that makes patients try least expensive drugs before taking ones that cost much more. Wilcox had to catch a plane before we could explore that issue and before I could ask about who funds Patients Rising. He didn’t respond to my requests to finish the conversation.

Both Wilcox and his wife had worked with Vital Options International, another patient advocacy group with a special mission of generating global cancer conversations. She is a former executive director. A search of [Vital Options International’s] website showed that drug industry heavy hitters, such as Genentech, Eli Lilly, and Bristol-Myers Squibb, had in the past sponsored some of the group’s major activities, including The Group Room and Advocacy in Action, which offer educational patient-driven content filmed at oncology conferences.

Patients Rising is pushing back particularly strongly against Dr. Peter Bach, an epidemiologist at New York City’s Memorial Sloan Kettering Cancer Center, who has been outspoken about the high cost of cancer drugs.

“Patients Rising doesn’t like Bach’s DrugAbacus that lets users evaluate the value of their cancer drugs on dimensions such as cost, side effects, and benefits,” writes Lieberman. “A post by Terry Wilcox for Vital Options International last summer notes, ‘Cancer patients don’t see value in economic terms,’ and advises readers: ‘Beware drug price calculators that give insurance companies and hospitals the ability to quantify a cancer patient’s life.’”

‘A flawed narrative’

As Lieberman writes,

It’s pretty clear after dissecting the activities of this new patient advocacy group that it’s advocating for more drugs no matter what the price, no matter how effective or ineffective they happen to be. Is the group’s agenda the same as that of patients? I asked Dr. Vinay Prasad, an oncologist and researcher at Oregon Health Sciences University, who just published a paper last week in JAMA Internal Medicine. Prasad and a colleague found that of the public speakers at 28 meetings of the FDA’s Oncologic Drugs Advisory Committee, one third had financial connections to drug companies or the organizations they represented received support from those companies seeking marketing approval.

There’s a flawed narrative, Prasad said, that patients want more drugs faster and are willing to tolerate major uncertainty about the risks. “There’s a big disconnect in my experience about what you hear in the news and what patients want,” he told me. In his practice, they are asking about risks and benefits, but that story never gets told. “Have you read a story about patients asking for more information about risks?  A vocal minority is speaking on behalf of a largely silent majority.” But it’s a vocal minority that’s very well funded.

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FMI: You can read Lieberman’s article on the HealthNewsReview website