One cancer survivor’s frustration over prescription drug pricing resonated enough with the Laura and John Arnold Foundation that it provided seed money for a national patient group that shares this funder's concerns about Big Pharma’s profits and influence. Organizer David Mitchell—whose prescriptions for anti-cancer drugs cost $26,000 a month—is spearheading the group, Patients for Affordable Drugs, which launched last month.
Mitchell found a willing partner in the Arnold Foundation, which support efforts to correct what it considers deep distortions in the prescription drug marketplace that hurt the American public. The Houston-based funder wants to see increased competition for patient drugs, more drug efficacy information for insurers and patients, and a streamlined development and approval process for getting new treatments to the marketplace.
We've written before about the Arnold Foundation's work on drugs, which pits it against Big Pharma, one of the most politically powerful forces in America. Indeed, since 1998, drugmakers have spent more on campaign contributions and lobbying than any other industry in the United States.
We've wondered whether the Arnold Foundation can get very far in this fight with the odds so stacked against reform—and likely even more so since Trump's election. The fact that the foundation has sunk so much of its grantmaking money in this area into research isn't reassuring. As we wrote earlier, "In many areas where American society is stuck, the problem is not the lack of evidence-based solutions; it's who has power—and drug prices are a prime example."
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On the other hand, the Arnolds certainly do understand power. They are well known for pulling every lever they can to influence public policy, including making major political donations and 501(c)(4) contributions. And the couple's breadth as mega-givers is again on display here, with the foundation's backing of Patients for Affordable Drugs.
One thing the foundation likes about Mitchell’s group is that it vows not to accept any money from the pharmaceutical business or anyone with ties to Big Pharma.
Nine out of 10 patient advocacy groups in this country accept funding from pharmacy companies, according to the findings of a just-released study in the New England Journal of Medicine. Dr. Ezekiel J. Emanuel, an oncologist and vice provost at the University of Pennsylvania, told the New York Times he was shocked by the findings.
Emanuel, a former policy adviser to President Obama and one of the authors of the study, told the Times that patient advocacy groups are secretive about their sources of funding, especially when it comes to Big Pharma’s involvement. Medical researchers do a better job of revealing their funding sources, and that same transparency in reporting is needed in pharma.
Mitchell agreed with the recommendation by the study authors that drug companies disclose how much they’re giving to patient groups. “I think sunshine is an excellent disinfectant,” he told the Times. The Arnold Foundation is spending $500,000 to support Mitchell’s group as it works toward policy changes that drive down prices, and tracks drug pricing trends.
The Arnolds have spent close to $20 million since 2011 on a host of pro-consumer projects around the price and availability of life-saving drugs. Big new grants keep going out the door, as the foundation approaches this daunting challenge from different angles.
For example, the foundation supports evidence-based drug pricing that shows a treatment is worth the price tag. The foundation gave $1.58 million recently to the Oregon Health & Science University in support of improving the Medicare drug purchasing process. The research supports the design of a value-based payment model. Under this model, patients pay for prescription drugs based on health outcomes. The private insurers renegotiate what they pay drug companies, and pass on discounts or rebates to patients, which experts say could include lower-priced health plans. Meanwhile, with $3.5 million in Arnold support, John Hopkins University is researching policy options to give patients the greatest access to effective medicines at the lowest possible prices.
The foundation is also keen on increasing transparency on how drugs are priced and paid for, giving $4.6 million to the Memorial Sloan Kettering Cancer Center for new work in this area. Another initiative funded by the Arnolds involves a $176,000 grant to the Alliance for Health Reform, linking prescription drug pricing and the impacts on healthcare costs.
Physicians and health professionals already have better information about drug manufacturer trials. The group, Evidence for Healthcare Improvement, produces a regular report about new drugs, using a $5.2 million grant from the Arnold Foundation. The report reveals a drug's comparative effectiveness, cost effectiveness, and the financial impact it could have on patient treatment costs.
With backing from Arnold, David Mitchell says he wants Patients for Affordable Drugs to educate and mobilize a public campaign that lowers costs and financial barriers to drug therapies. He himself has a powerful story to tell, since the drugs that keep him alive cost a small fortune. And his group has been busy collecting similar stories, as well as laying out solutions to overpriced drugs in a succinct way.