Most patients have never heard of the Institute for Clinical and Economic Review, but it plays a central role in deciding our access to the treatments prescribed by our doctors.

That’s because ICER works with insurance companies to evaluate how medical treatments affect insurance profits. Not surprisingly, ICER routinely rejects groundbreaking medical  innovations in favor of outdated treatments that are cheaper, less effective and better for insurance profits.

In recent weeks, more doctors, patient advocates and health care policymakers have spoken about ICER’s flawed reports, including former FDA Commissioner Dr. Scott Gottlieb. He directly questioned ICER’s impartiality, credibility and independence. 

“We don’t have a good structure in the marketplace for entities that are impartial, credible, to do independent assessments,” Dr. Gottlieb said. “If we do end up relying on third-party expert assessments to inform some of the decisions that get made, it’s not going to be ICER.” 

Here are 5 reasons why “it’s not going to be ICER” that regulates health care decisions. 

1. ICER is funded by health care special interest groups, including insurance companies and pharmacy benefit managers.

ICER has accepted millions of dollars from healthcare special interest groups, including insurance companies and pharmacy benefit managers. 

According to ICER’s website, the group’s current list of funders includes big insurers United HealthCare, America’s Health Insurance Plans, Anthem, Aetna, Blue Cross, Blue Shield, Health Care Service Corporation, and Kaiser Permanente. They also accept money from pharmacy benefit managers, CVS Caremark and Express Scripts, the corporate drug middlemen that siphon off billions of dollars in rebates intended for patients.

The Huffington Post reports that insurance company Blue Shield of California provided ICER with two-thirds of its initial seed money.

2. Openly hostile to patients, ICER proudly refuses to give patients a vote on its decisions. 

ICER excludes patient voices from its review process and proudly refuses to grant patients a vote on its value assessments.

During its July 2019 meeting on Duchenne muscular dystrophy treatments, Mindy Leffler, whose son lives with the rare and fatal disease, passionately shared the patient’s perspective.  

Instead of acknowledging patients’ concerns, ICER President Steve Pearson responded, “I’ll be honest, that’s why we don’t have you vote. We don’t think that’s fair, (to include patients) certainly.”

3. ICER’s charter grants insurance companies 3 votes on its board.  

From the beginning, insurance companies have had “designated” slots on ICER’s board. 

Health care giant Blue Shield had three “designated” slots on ICER’s Board of Directors, according to a public disclosure report required by the IRS. 

“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. Currently, Murray Ross of Kaiser Permanente and Lewis Sandy of UnitedHealth Group serve on the ICER Governance Board. 

ICER President Dr. Steve Pearson, according to SourceWatch, has ties to the insurance industry as “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.”

4. ICER is completely UNREGULATED and operates without oversight, transparency or public accountability.

The Food and Drug Administration requires its employees and decision-makers to abide by extensive ethics and financial disclosure rules. For example, FDA employees, their spouses and children are banned from having financial interests in companies regulated by the FDA.

Strict financial disclosure rules ensure that health care evaluators do not have a financial interest in their decisions.

Unlike the Food and Drug Administration, ICER’s decisions are completely unregulated. ICER’s employees and board of directors are not required to follow federal ethics rules or financial disclosure laws that are required at the FDA. There’s no way for the public to review potential conflicts of interest at ICER.

“Most people don’t even know that ICER exists,” says Terry Wilcox, co-founder and executive director at Patients Rising, a patient advocacy non-profit that helps patients overcome insurance barriers to access. “There’s no transparency at ICER.”

5. ICER is inconsistent and routinely flip flops in its calculations. 

Without independent oversight, ICER can arbitrarily calculate value however it sees fit.

One example of ICER’s value flip-flops: single or short-term transformative therapies. ICER has argued for years that healthcare treatment decisions should consider “budget costs”.

“We want to ring an alarm bell if we think short-term budget costs are going to rise and it would harm the national economy,” ICER President Dr. Steve Pearson said in 2016.

Yet, in “Value Assessment Methods and Pricing Recommendations for Potential Cures: A Technical Brief,” ICER dismisses the budget savings from transformative therapies.

ICER is not required to apply the same standards, calculations or economic measures for all of its reports.

Take Action: Make Your Voice Heard! 

Are you a patient living with a rare disease or chronic condition? Here are three ways that you can take action and stand up to ICER:

  1. Become an Advocate: Join the Patients Rising NOW team and help us advocate for patients’ access to care. Join today at Patients Rising NOW.
  2. Post on Social Media #ICERWatch: Share your patient voice via social media using #ICERWatch.
  3. Watch Patients Rising Webinar: Check out one of the Patients Rising webinars to learn more about how you can share your patient voice.