DRUG INDUSTRY WAR CHEST AGAINST LOWER DRUG PRICES REACHES RECORD $109 MILLION
Big Pharma Dumps in Additional $22 Million to Stop Prop 61
According to recent filings with the Secretary of State’s office, the drug companies have dumped an additional $22 million into their attempt to mislead voters into voting against Proposition 61, the California Drug Price Relief Act. The opposition, solely funded by Big Pharma itself, now has accumulated an eye-popping war chest of $109 million, making it the single most expensive ballot side in California history. (The campaign on behalf of Propositions 94-97 in 2008 spent a combined $108.3 million, but that covered four different measures.)
“The drug companies are clearly panicked because their campaign of lies and distortions against Prop. 61 up to this point isn’t working, and they are having trouble moving voters to oppose the measure,” said Garry South, lead strategist for the Yes on Prop. 61 campaign. “Now, their calls with Wall Street investors and stockholders have turned to questions about what happens to stock prices if 61 passes, so they’ve doubled down to try to strangle the measure in order to keep their sky-high profits and stock prices up.”
“Big Pharma’s ridiculous boilerplate arguments against 61 are that ‘it won’t work,’ and that it may actually lead to higher drug prices,” South said. “But if there was ever any question as to how much the drug industry really fears this measure and its impact, their massive contributions to try beat it are the best testimony. They are terrified because they know the public supports Prop 61, hates the drug companies and a reckoning is near.”
Prop. 61 is the only vehicle available in this election year for Californians to address the high cost of life-saving drugs, and is the only drug-pricing measure on the ballot in any of the 50 states. As such, it is garnering significant national attention, especially after Sen. Bernie Sanders’ visit to California last week to campaign for 61.
Proposition 61 would require the state of California to negotiate with drug companies for drug prices that are no more than is paid for the same drugs by the U.S. Department of Veterans Affairs (DVA). Unlike Medicare, the DVA negotiates for drug prices on behalf of the millions of veterans it serves, and pays on average 20-24 percent less for medications than other government agencies, and up to 40 percent less than Medicare Part D. Prop. 61 empowers the state, as the healthcare buyer for millions of Californians, to negotiate the same or an even better deal for taxpayers, saving the state billions.
A SURPRISE SHILL FOR BIG PHARMA?
Patients groups are the focus of a new report that asks questions about ties to corporate pharmaceutical companies.
Patients groups have credibility and influence precisely because they ostensibly represent the ordinary people whose fate is in the hands of the health care system, from brain injury survivors to people living with cancer to individuals facing mental health problems.
Now a troubling new report from the corporate watchdog group Public Citizen reveals that some patients groups are accepting donations from the pharmaceutical industry and then siding with it in backing policies that may contribute to higher drug costs for the very patients whose interests they claim to represent.
At issue is the pharmaceutical industry’s efforts to undermine a reform proposed by the Centers for Medicare and Medicaid Services (CMS) that would encourage doctors to prescribe cheaper medications that are equally effective as high-cost drugs. Known as the Medicare Part B demonstration project, the proposal would modify the reimbursement structure for prescription drugs “that are administered in a physician’s office or hospital outpatient department, such as cancer medications, injectables like antibiotics, or eye care treatments,” according to CMS.
“Today, Medicare Part B generally pays physicians and hospital outpatient departments the average sales price of a drug, plus a 6 percent add-on,” CMS explains. “The proposed model would test whether changing the add-on payment to 2.5 percent plus a flat fee payment of $16.80 per drug per day changes prescribing incentives and leads to improved quality and value.”
Public Citizen argues that the proposed reform is a step in the right direction because it “aims to remove incentives for needlessly prescribing high-priced medicines when equally effective and affordable alternatives are available.”
“Today, we pay doctors more when they prescribe higher-priced medicines—and so they do, even when there are affordable equivalents,” said Peter Maybarduk, director of Public Citizen’s Access to Medicines program, in a press statement. “As a result, Americans pay more for health care. We struggle to pay medical bills and resort to dangerous pill-splitting, or even forego our treatments.”
Unsurprisingly, the pharmaceutical industry has come out swinging against the proposal, unleashing a large-scale lobbying offensive at the beginning of the summer.
This is where the patients groups come in. In addition to lobbying efforts from pharmaceutical and physicians groups, 147 patients organizations signed two different letters addressing U.S. Congress and CMS opposing the proposed reform, organized by the Partnership to Improve Patient Care and the Community Oncology Alliance.
“We believe that this type of initiative, implemented without sufficient stakeholder input, will adversely affect the care and treatment of Medicare patients with complex conditions, such as cancer, macular degeneration, hypertension, rheumatoid arthritis, Crohn’s disease and ulcerative colitis, and primary immunodeficiency diseases,” states the COA letter.
According to the Public Citizen report, of the 147 groups that opposed the reform, at least 110—or three-fourths—receive funding from the pharmaceutical industry.
“Unfortunately, patients’ groups are not required to disclose these conflicts of interest, so this finding is based on voluntary disclosures that patients’ groups and drug companies provide on their websites,” explains Rick Claypool, research director for Public Citizens’ president’s office and author of the report. “As such, they likely under-represent the degree to which patients’ groups receive pharmaceutical industry sponsorship, and how much the group receives from the industry is unknown.”
A separate Public Citizen report released July 11 found that members of the U.S. House of Representatives who oppose the reform received “82 percent more in campaign contributions for the 2016 election cycle than members who did not side with the industry.”
Claypool argues that such donations, at the least, raise questions about the independence of those who accept the funds.
“It is certainly not the case that every patient group that takes money from Big Pharma is at the beck and call of the industry; and of course there is a wide variance in groups’ dependence on pharmaceutical funding,” he writes. “However, it is the case that industry funding tends to make groups more sympathetic to industry positions, and more likely to respond to industry requests to weigh in on policy issues, including matters about which they may have limited expertise.
Groups push pharma agenda under the guise of patient advocacy
There’s nothing like a new Astroturf group to confusethe 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.
Furor Over Drug Prices Puts Patient Advocacy Groups in Bind
By KATIE THOMAS September 27, 2016
The New York Times
Public anger over the cost of drugs has burned hot for a year, coursing through social media, popping up on the presidential campaign, and erupting in a series of congressional hearings, including one last week over the rising price of the allergy treatment EpiPen.
But one set of voices has been oddly muted — the nation’s biggest patient advocacy groups. The groups wield multimillion-dollar budgets and influence on Capitol Hill, but they have been largely absent in the public debate over pricing.
To those who have closely followed the drug world, the reason is simple: Many of the groups receive millions of dollars a year in donations from companies behind the drugs used by their members. When they prod drug companies, it is generally for better — not less expensive — treatments.
But critics say that by avoiding the debate over cost, they are failing in their patient-advocacy duties.
“It is a conflict of interest, because the interests of the pharmaceutical industry, from whom they are getting support, may be different from the interests of the patients,” said Dr. Michael Carome, the director of the Health Research Group at Public Citizen, a consumer advocacy group.
Over the last year, pharmaceutical companies have set high prices on medications as varied as breakthrough hepatitis C drugs and little-known generics that have been around for decades. The higher prices have hit American pocketbooks harder than usual, as insurers have increasingly shifted costs to patients.
And for patient groups, loudly addressing the issue can be perilous, as Cyndi Zagieboylo, the chief executive of the National Multiple Sclerosis Society, recently discovered.
She said members of her group, one of the most influential patient charities, had identified cost as a priority. The average annual cost for multiple sclerosis medications is $78,000 today, nearly 400 percent higher than the $16,000 average in 2004, the group says.
But as soon as Ms. Zagieboylo started discussing a plan — a modest proposal that involved bringing together drug makers, insurers and others to find solutions — she said she encountered resistance. Other patient groups would not join her, and she said she was told by members of Congress, as well as some of the pharmaceutical companies that donate to her group, to tread carefully.
“We were warned, you know, in a number of ways, just sort of to be careful about this,” Ms. Zagieboylo said. “A couple of pharmaceutical companies mentioned, ‘Boy, we support you, why are you doing this to us?’”
The group went ahead with the new campaign anyway, announcing it last week at an event attended by the National Health Council, an umbrella group for patient advocacy groups.
But Ms. Zagieboylo said the pushback gave her pause. She said she and the group’s board members decided they had to be ready to lose donors over the issue, including drug companies. The pharmaceutical industry donated about $10 million to the group in 2015, according to its website, accounting for about 4 percent of its annual budget.
“They are taking a lot of heat,” she said of the companies, who she said were not solely to blame for higher drug prices. “And they don’t want us to pile onto that, because they know we have influence.”
That influence is what makes patient groups so attractive to the drug industry. Some of the largest groups can call on millions of dedicated and highly motivated members and help drug companies by signing up participants for clinical trials, running financial assistance programs and even lobbying government officials for drug approvals or favorable legislation.
“It’s much more compelling when a parent reaches out to their congressman and says, ‘Please contact the F.D.A., because my child is dying,’” said Diana Zuckerman, the president of the National Center for Health Research, a nonprofit that does not accept money from industry.