ICER Review of Potential New ALS Drugs

The Institute of Clinical and Economic Review, an organization commonly known as ICER, has opened a review of AMX0035 and oral edaravone to determine the cost-effectiveness of the drugs. If ICER says a new medication does not have value, payers may decide to restrict access to it. 

While we are working to provide ICER with data and input from the ALS community, we are also concerned that ICER’s methodology for evaluating drugs is discriminatory and over the potential this review can be used to limit access to AMX0035 and other new therapies.  

In June, ICER released its initial report. We filed formal objections to their flawed draft, stating: 

Given the complexities of the American health system, it is not appropriate to assess the burdens of ALS experienced by foreign populations, as is done in this Evidence Report. For both logical and ethical reasons, the experiences of Americans with ALS need to shape the value assessments of American drugs. Data from the United Kingdom and the Republic Korea are better suited to pricing drugs for Britons or Koreans living with ALS. The Draft Evidence Report, however, relies upon data that is a decade or more old from the United Kingdom, Korea, and the US to assess the ALS quality of life and costs.

Read our full statement here.

Cramer Family

 Blog Post: Why I’m Signing the ICER Petition – And You Should, Too

"People who battle this terrible disease deserve the respect to have their experiences not only heard, but considered independently. The concept of value changes from person to person. My mom had her own concept of what was important."

Read more

Podcast Episode: ICER Set to Review AMX0035

Jeremy welcomes Dr. Neil Thakur, chief mission officer at The ALS Association, and Sara van Geertruyden, executive director at the Partnership to Improve Patient Care, to discuss a cost-effectiveness review of AMX0035 by ICER and criticisms of the organization’s methodology that has been called discriminatory toward people with disabilities.

Listen Now

Sign The ALS Association’s petition calling on insurers to ban the use of discriminatory value assessments that limit access to ALS drugs.
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