Their kids have a rare and fatal disease. This unelected, unaccountable industry insider just told a group of Duchenne moms: “That’s why we don’t have you vote.”

Dr. Steve Pearson just might be the most powerful insider in health insurance. 

He’s the president of the Institute for Clinical and Economic Review, a controversial organization that works with insurance companies to evaluate how medical treatments affect insurance profits. Many insurance companies, pharmacy benefit managers and state health systems use ICER’s reports to decide which treatments get covered – and which patients are denied access to care.

Known by the acronym ICER, the self-appointed cost appraiser has no government authority or oversight. Yet, due to its close relationship with insurance companies, ICER’s decisions often circumvent the FDA’s authority.

“When ICER determines a treatment is too expensive, insurance companies and pharmacy benefit managers use that report to deny patients access to treatment,” explains Terry Wilcox, executive director of Patients Rising, a national patient advocacy non-profit that helps patients overcome insurance barriers to access.

For years, Patients Rising has been ICER’s leading critic, repeatedly pointing out ICER’s anti-patient bias, sloppy and incomplete reports, and financial backing from insurance companies. Now, there’s undeniable proof of ICER’s anti-patient agenda. 

ICER President Pearson to Duchenne Moms: “I’ll be honest, that’s why we don’t have you vote.”

In July, ICER hosted a public evidence meeting on its evaluation of not one, but three life-changing innovations to treat Duchenne muscular dystrophy, a rare and fatal disease that causes progressive muscle deterioration. Duchenne is the most common type of muscular dystrophy, and affects approximately 13,000 kids, mostly boys.  Most Duchenne patients die before their 20th birthday. 

The new medicines don’t cure Duchenne, but they do treat it. And that brings hope to mothers like Mindy Leffler, whose son lives with Duchenne. 

ICER: Moms denied vote
Mothers like Mindy Leffler, whose son lives with Duchenne., are challenging ICER’s flawed methodology.

During ICER’s comment period, Mindy questioned the very basis of ICER reducing her child’s life to a number on an insurance profit-and-loss statement. Patients point out that quality-adjusted life-years – the insurance industry’s favorite method for calculating the worth of its customers – ignore the value of innovation and discriminate against patients living with rare or fatal diseases. 

“How am I supposed to make some comment on the value of my son’s life?” Leffler asked. 

ICER President Steve Pearson’s response was shocking.

“I’ll be honest, that’s why we don’t have you vote,” ICER President Steve Pearson told the group of moms, according to Stat News. “We don’t think that’s fair, certainly.”

ICER Denies Patients Vote, Insurance Gets Designated Votes

Although the organization proudly excludes patients from voting, ICER has no problem giving a vote to representatives of the insurance industry, which has a vested financial interest in ICER’s decisions.

ICER President Steven D. Pearson, MD
“I’ll be honest, that’s why we don’t have you vote,” ICER President Steve Pearson told a group of moms.

According to its Form 990 filed with the IRS, health care giant Blue Shield had three “designated” slots on ICER’s Board of Directors. 

“Blue Shield of California Foundation is allowed to fill any vacancies from the resignation, removal or death of any of its three designated slots,” ICER disclosed in its 2014 Form 990 non-profit tax return.

In November 2018, Michael Graham, the political editor at InsideSources, uncovered ICER’s deeper connections to the insurance industry, reporting:  

“In addition to receiving funding from major insurers like Blue Cross of California, Kaiser Permanente, Partners Healthcare, Aetna, Anthem, and UnitedHealth, ICER’s governing board includes: 

  • Peter Long, PhD, President and CEO, Blue Shield of California Foundation
  • Murray Ross, PhD (Chair), Vice President and Director, Kaiser Institute for Health Policy Kaiser Permanente
  • Lewis Sandy, MD, Executive Vice President, Clinical Advancement, UnitedHealth Group. 

There’s also another person at ICER working for insurance interests: Dr. Steve Pearson. 

As revealed by SourceWatch, Pearson is “a former research fellow for America’s Health Insurance Plans (AHIP), the insurance industry’s lobbying trade association in Washington, which spent nearly $10 million lobbying Congress in 2015.”

Excluding Patients Should Disqualify ICER Reports

Patient advocates say that the stunning admission by ICER President Steve Pearson should automatically disqualify ICER’s reports from being used to evaluate access decisions.

“ICER cannot fairly evaluate treatments when it intentionally excludes patient voices from the conversation,” said Patients Rising’s Wilcox. “The patient voice must be included in health care.” 

Despite being outgunned by the insurance industry, Patients Rising says that it will continue to stand up for patients.

“Patients have incredible power when we unite with one voice,” Wilcox says.