ALS Association Comments on Draft Payer Policies that Refuse to Cover Qalsody

Insurance form

The ALS Association sent formal responses to Blue Cross Blue Shield of Illinois, New Mexico, Texas, Oklahoma, and Montana challenging their draft policies regarding coverage of Qalsody, approved by the FDA earlier this year for treatment of people living with ALS caused by the SOD1 gene mutation. These payers are all owned by the Health Care Service Corporation.

The draft policies consider the use of Qalsody “not medically necessary.” This is unacceptable as it has both biological and clinical benefit.

In letters also shared with the Centers for Medicare and Medicaid Services and the Veterans Administration, we called on these insurers to revise their policies to:

  • Provide immediate coverage for Qalsody that is consistent with the FDA-approved indication and labeling, including in combination where appropriate.
  • Avoid unnecessary delays in access to Qalsody caused by prior authorization, tiered/fail first/step therapy, or other deliberate and unnecessary barriers to access.

You can read the full letter here.


Submitted by: Nino K. on Fri, 09/01/2023

I was diagnosed with ALS on July 2023. I would like to know more about this drug!

Submitted by: Keith R. on Mon, 09/04/2023

We all need to help get this treatment approved.

Submitted by: Cynthia E. on Mon, 10/09/2023

I was diagnosed with Familial SD01 ALS in April of 2022. I started these injections in June of 2022. After watching my family deteriate quickly from this disease, i feel this injection is definitely slowing down the progression for me. Once this drug became FDA approved, my insurance company did not approve. New York State insurance carriers need to review their policies as well!

Submitted by: Amy L. on Tue, 10/17/2023

Hi Cynthia. I'm so sorry to hear you are living with this awful disease. Your local ALS Association care team may be able to help you advocate with your insurer or find grants you are eligible to pay for the treatment. You can find their contact information at

Submitted by: Ronald V. on Fri, 10/13/2023

Did BCBS and others respond by September 15? If so, what was their response?

Submitted by: Amy L. on Wed, 10/18/2023

Hi Ronald. Unfortunately we have not received any meaningful feedback from any health insurer.

Submitted by: john P. on Sat, 10/21/2023


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