There’s nothing like a new Astroturf group to confuse the public. 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. Now along comes a new patient advocacy organization, Patients Rising and its sister group Patients Rising Now, which debuted in late summer shortly after the House of Representatives passed the 21st Century Cures Act. Recall that the Cures Act would weaken already weak standards for FDA approval of medical devices opening the door for potentially harmful products to get on the market.
Like most Astroturf groups, its purpose seems noble enough and its goals lofty. On Facebook Patients Rising describes itself this way:
“Patients Rising was launched to fight for access to vital therapies and services for patients with life-threatening diseases. This patient advocacy organization will educate, advocate and communicate the importance of access to essential treatments and diagnostics. We will be focused on ensuring that the patients’ voice is heard, access to new therapies is paramount, and the pipeline of progress is not threatened.”
The group, co-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, aims to accomplish all that through workshops, webcasts at conferences, social media, and sharing patient stories, a staple of these groups.
Its goals are in sync with the zeitgeist of the medical marketplace—Joe Biden’s Moon Shot, the Cures Act, the FDA’s eagerness to push more drugs into the hands of patients. Astroturf groups, of course, are nothing new in the commerce of medicine, but the emergence of a new patient advocacy group to push against the developing meme of unaffordable drugs couldn’t have come at a better time. The Pharmaceutical Research and Manufacturers of America (PhRMA) announced the other day plans for a several million dollar advertising campaign aimed at federal and state lawmakers, policy analysts, and other political influencers, according to the Wall Street Journal. The aim is to polish up the industry’s image in light of rising drug prices and promote the industry’s role in developing new drugs and advancing medical science. The ads will feature patients who’ve been helped by new medicines, putting the patient story front and center in any discussion of the drug industry and drug costs, said Robert Zirkelbach, senior vice president of communications at PhRMA.
High drug prices have made their way into presidential politics, and some in the industry are speaking out like Dr. Steve Miller, head of the pharmacy benefit manager Express Scripts, who said recently, “We are now being much more vigilant about identifying these things that we believe (are not driven by) scientific innovation, but financial innovation.”
That sounds like the sort of scrutiny Patients Rising will fight against. 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 its 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 uses Twitter to advance its goals. One tweet : “As a patient I expect to be able to access the health services I need. Retweet if you agree.” Who wouldn’t agree with a statement like that, which builds support and awareness for the group? It also reposts material from other news outlets like “New medicines can be winning play for patients,” an op-ed from the San Diego Tribune, or a lengthy news release about the newly formed Patients Alliance for Drug Safety Protections, a coalition of advocacy groups with links to the pharmaceutical industry, or Jonathan Wilcox’s column in the Los Angeles Daily News, “How Step Therapy Tramples Patients.”
The group makes clear it doesn’t buy the argument drug prices are too high. A commentary on its website from The Tampa Tribune, “Price controls on drugs every bit as absurd as a nationwide salary cap for cancer patients,” by Dr. Thomas Stossel, the American Cancer Society Professor of Medicine and a visiting scholar at the American Enterprise Institute, argues that instead of cost controls we need to make sure that financially-needy patients “find their way to assistance programs to help pay for treatment,” a remedy that might help patients but does nothing to put the brakes on the high underlying price.
The group’s pushback against the high drug price argument aims largely at Dr. Peter Bach, the epidemiologist at New York City’s Memorial Sloan Kettering, who has spoken out about the high price 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. 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.”
Other targets are the insurance companies and regulatory barriers “standing in the way of the vital treatments they (patients) need every day.” The group passes along unfavorable stories from other news outlets about insurers. When Cigna dropped coverage of 3D mammograms, Patients Rising took note. It also passed along a story in The Fiscal Times, “The Most Hated Health Insurance Company of 2015.” It was Cigna. Insurers have begun their own campaign to bring attention to the high cost of medicines. Its Drug of the Week feature spotlights high-cost pharmaceuticals.
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.
Trudy Lieberman is a veteran health care journalist and regular blogger for HealthNewsReview.org. She tweets as @Trudy_Lieberman.