Patient Advocates v. John Arnold

May 19, 2020 10:06 am

“He’s got a lot of gasoline.” That’s what American Enterprise Institute health policy researcher Ben Ippolito told STAT News about John Arnold’s effort to bankroll federal lawmakers’ efforts to impose price controls on prescription drugs.


Ippolito was right. According to STAT News, as of the fall of 2019, Arnold had showered at least $60 million “on researchers, patient advocates, and political groups” who are willing to carry his arguments to Congress, the media, and the public.


A lot of people, particularly those who represent some of the nation’s most vulnerable patients, are not buying Arnold’s arguments, however, no matter how much he is willing to spend. 


For example, the EveryLife Foundation for Rare Diseases, which is dedicated to advancing treatments to help rare disease patients, advised the Trump administration to abandon its plan for an International Pricing Index (IPI). The foundation warned, “When governments set the price of medicines, medical innovation slows and patients lose access to lifesaving treatments.” It concluded, “The extended delays on medicine access could mean the difference between life and death for American patients in need of treatments.”


As FiercePharma reported, the American Hospital Association, American Medical Association, and the Community Oncology Alliance (COA) also voiced concerns about the IPI. In comments to the Trump administration, the COA was very clear: “COA does not support the IPI Model, and we strongly urge CMS not to move forward with it as proposed. We are greatly concerned that the IPI Model, which would conduct nothing short of a mandatory national experiment on Medicare Part B beneficiaries, could disrupt access to the innovative therapies and care that vulnerable seniors with cancer and other serious diseases need.”


Doctors and hospitals also wanted the Trump administration to abandon the IPI. In a letter to congressional leaders, a coalition representing senior citizens and physicians warned, “[T]his model would impose decisions made in countries such as Greece or Japan on approximately half of all independent physicians and hospital providers, as well as their patients. Compounding these concerns, the model also interjects new middlemen between physicians and patients – vendors that would impose requirements dictating treatment for patients with cancer, autoimmune disorders and other complex, life-threatening conditions.”


The coalition concluded, “The model would restrict access in the short-term, and reduce incentives for medical advancement in the long-term, ultimately posing serious risks to vulnerable Medicare beneficiaries.”


The IPI is not the only proposal that has drawn patient advocates’ ire.


The California Chronic Care Coalition, an alliance of more than 30 leading consumer health organizations and provider groups, opposes H.R. 3, House Speaker Nancy Pelosi’s drug-pricing bill. It a statement in October 2019, Coalition President and CEO Liz Helms said, “H.R. 3 may leave in place a structure that benefits the middleman over patients and promotes untested government price controls that will limit patient access to ground-breaking medications.”


Patient advocates’ opposition to price controls is not new. As The New York Times reported, these organizations opposed a California ballot initiative in 2016 that would have prohibited state government programs from paying more for treatments than the lowest price paid by the U.S. Department of Veterans Affairs. Advocates representing individuals living with AIDS and Hepatitis C were among those skeptical of the measures.


In testimony before the U.S. Senate in January 2019, Dr. Mark Miller from the John and Laura Arnold Foundation acknowledged, “[T]he science behind new medications is the best it has ever been. Diseases that in the recent past would be debilitating or life threatening can now be managed through medication.”


As this blog has written in the past, that list includes AIDS and Hepatitis C.


Unfortunately, instead of igniting new research and development, John Arnold’s gasoline would merely dampen the prospect of future innovation.