Where We Stand

The ALS Association is concerned that ICER’s review of AMX0035 could be used by public and private health care payers to restrict access to a promising new drug based on a pricing methodology that is discriminatory, particularly against people with debilitating illnesses and severe disabilities.  

We are in agreement with the rare disease and disabilities communities that the use of measures like the quality-adjusted life year (QALY,) which can rate ALS on a scale that values life as worse than death, is discriminatory. 

The National Council on Disability (NCD), an independent federal agency that advises Congress and the Administration, strongly encourages Congress to expressly prohibit the use of the QALY by Medicaid and Medicare. In a letter sent to Congressional leaders last November, NCD noted:

“We unequivocally agree that drug prices need to be lowered, as high drug prices can themselves be a source of health inequity for people with disabilities. However, their lowering should not be based on the use of a pricing methodology that devalues the lives of people with disabilities in its design and has been proven to be discriminatory in its impact in access to treatments for people with disabilities and chronic illnesses.”

We continue our longstanding fight to make sure people with ALS have access to promising treatments, like AMX0035, and that Medicare, the Veterans Administration (VA) and commercial insurance companies do not set up arbitrary, discriminatory barriers to that access.    

People with ALS and other severe diseases and disabilities can live extraordinary and meaningful lives. A new medication that provides even a few more months of life could enable them to continue to make profound contributions – to raise children, to create, to advocate, to love. Each new month of life offers new possibilities to live until the next breakthrough treatment or cure is found.  

Learn more about ICER's cost-effectiveness review of AMX0035 on an episode of the Connecting ALS podcast.

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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