An obscure health care cost evaluator could deliver a devastating blow to patients living with multiple sclerosis this week, as it evaluates a promising new treatment for the autoimmune disorder.

The Institute for Clinical and Economic Review, which receives backing from the multi-billion-dollar insurance industry, is scheduled to evaluate siponimod, a new treatment for multiple sclerosis, at its May 23 meeting in Rosemont, Illinois.

Doctors and researchers are optimistic about the potential of this new treatment to help the more than 400,000 U.S. patients living with multiple sclerosis.

“This drug crosses the blood brain barrier,” Dr. Timothy West, a neurologist at the University of California San Francisco told Healthline News. “We’re not exactly sure what it does, but the results show it slows progression in those with later stage of disease… The immune system is activated in the periphery and dives into brain and causes havoc.”

In particular, researchers are most excited by this new treatments potential to aid patients living with a progressive form of multiple sclerosis.

Multiple Sclerosis

“What was found, and I think quite clearly found in a large-size study, was that siponimod in patients with secondary progressive MS clearly slowed the progression of clinical disability over the course of the trial,” said Dr. Robert Fox, a neurologist at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic. “(O)n an overall basis there was a 21% slowing in the rate of progression of clinical disability.”

First, patients must overcome the Institute for Clinical and Economic Review.

ICER Threatens Patient Access to Treatment

A private unregulated organization, ICER lacks any authority from the Centers for Medicare and Medicaid Services, Food and Drug Administration, or Department of Health and Human Services. However, powerful health care industry players turn to ICER to decide which treatments get covered – and which medications are denied.


“ICER is the most powerful anti-patient force in health care,” explains Terry Wilcox, co-founder and executive director at Patients Rising NOW, a national patient advocacy non-profit that advocates on behalf of patients with life-threatening conditions and chronic diseases. “Every patient experiences multiple sclerosis in a different way. Yet, ICER is trying to limit new and innovative options for MS patients with their flawed methodology.”

Both insurance companies and pharmacy benefit managers routinely use ICER’s reports to deny patients access to the treatments prescribed by their doctor. For patients living with multiple sclerosis, insurance barriers and treatment restrictions mean an agonizing wait as their symptoms worsen.

ICER Analyses Start from Same Premise: Deny Patients Access

Although ICER’s May 23rd meeting is in under the auspices of obtaining stakeholder input, the outcome appears predecided. In its report announcement, ICER admits that its economic analysis “did not model the cost-effectiveness of siponimod for the treatment of relapsing-remitting MS.”

“… Few [therapies] have shown benefit in slowing this independent progression [of progressive MS],” David Rind, ICER’s Chief Medical Officer said in a press statement.

That ignores the real progress in multiple sclerosis treatments over the past two decades. Economic models, such as those proposed by ICER, fail to capture the tremendous gains that bring hope to patients living with the disease. Instead, patients’ lives are reduced to a number: $50,000-$150,000 per quality-adjusted life year (QALY).

“Patients are not a number,” says Patient Rising NOW’s Terry Wilcox. “MS patients should have the same right to access treatments as anyone else.”

Get Involved: 3 Ways to Fight for Patients Living with Multiple Sclerosis

1. Tell Your Story: MS patients can tell their stories by reaching out to Patients Rising NOW.

2. Post on Social Media — #ICERWatch: Together, we can amplify the patient voice by using the hashtag: #ICERWatch.

3. Attend ICER’s May 23rd Meeting: If you live in or around Rosemont, Illinois, we encourage you to attend ICER’s meeting on May 23rd.