Drug Costs

“Maybe It’s Worth It” – Why Does An Insurance-Funded Group Get To Decide?

June 21, 2019 9:10 am

In a Boston Globe article this week, the Institute for Clinical and Economic Review, ICER, concedes the price set for Zolgensma “might be worth it.”


For anyone who might not have been watching the news over the last month, Zolgensma is the AveXis drug that treats spinal muscular atrophy. As the Globe notes, it is a “life-saving treatment.” Specifically, a one-time dose can cure children with the disease who, without it, almost certainly would never live to enter kindergarten.


Controversy erupted after the Food and Drug Administration approved the treatment because of its $2.1 million list price. (The list price, as a reminder, is not what patients pay.)


ICER might be skeptical, but parents believe the treatment certainly is worth it since it almost certainly assures that children previously facing a death sentence will live.


Laura Weisgarber, whose son was diagnosed with spinal muscular atrophy as an infant after he “started getting really fussy, stopped squirming, and got weaker and weaker” told NPR that her son is now able to play outside because of Zolgensma. “It’s amazing,” she said. Mansfield, Ohio mother Tina Anderson, whose four-year-old son has received Zolgensma, told STAT News, “To me, you cannot put a price on your child’s life. … If tomorrow we were told to pay back everything, we would. We would figure it out. Because our son is now alive and well.”


“You cannot put a price on … [a] child’s life,” she said.


Yet ICER is trying to put a price on the lives of children, and the elderly and the disabled by determining the “worth” of treatments for pharmacy benefit managers, government officials who oversee Medicare, Medicaid, and other health-care programs and others in the health-care ecosystem. 


What qualifies ICER to make these decisions? Money. Specifically, funding from the health insurance industry and billionaires John and Laura Arnold.


In The Globe story, ICER Founder Steven Person said, “We’re the mouse that roared,” going up against, as he characterizes them, “huge companies, huge resources, huge everything.” ICER also calls itself an “independent and nonpartisan research organization” that “evaluates the clinical and economic value of prescription drugs, medical tests, and other health-care and health-care delivery innovations.”


Hardly. According to its own accounting, ICER receives almost 80 percent of its operating budget from private foundations, including the billionaire-funded Laura and John Arnold Foundation. ICER also has received funding from health insurance companies.


Pearson’s office might be “sparse,” as he told The Globe, but the organization’s pockets are deep.


In The Globe story, Pearson also painted the group’s only adversaries as pharmaceutical companies. Also not so.


Patient advocacy groups are skeptical of the organization. In an April 2018 report, the group Alliance for Patient Access (APA) argued ICER’s models should not be relied upon because they don’t take into account patient diversity, comorbidities or the severity of the illness or medical condition from which the patient is suffering. APA noted ICER “has come under scrutiny for its methodology and calculations” and questioned the organization’s independence, explaining ICER’s funding “comes directly from health insurers or from nonprofit foundations supported by health insurers.”


Sounds more lion than mouse.