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Stop the Centers for Medicare and Medicaid Services (CMS) from Denying Coverage for a New Anti-Alzheimer’s Drug to People with Down Syndrome

The Federal government is about to deny coverage for essential medicine to people with Down syndrome. Please do not let this happen.

Last year, the Food and Drug Administration (FDA) approved a new drug called aducanumab, one of the first treatments meant to address the cause of Alzheimer’s disease and the first in a new class of treatments. This is good news for millions of people and especially good news for people with Down syndrome, people like John Cronin, our co-founder at John’s Crazy Socks. Why? People with Down syndrome have a 90% chance of developing Alzheimer’s disease. Think about that: almost every person with Down syndrome will develop Alzheimer’s. They will see the onset of these symptoms earlier in life than members of the general public, and, once they do, they will experience a faster progression of the disease.  

But hope is on the horizon. This new drug can make a difference for thousands of people with Down syndrome. Once the FDA approved this new anti-Alzheimer’s Drug, the next question is to get coverage for the drug so that people can receive treatment. That means the Centers for Medicare and Medicaid Services (CMS) needs to approve this drug for reimbursement. That decision not only affects Medicare and Medicaid recipients, but people receiving private health insurance since so many companies base their coverage on what the CMS allows.

To deny coverage to people with Down syndrome is cruel and denies them basic human rights. People with Down syndrome will almost certainly develop Alzheimer’s, yet the CMS will deny coverage for a drug that can prevent that fate. This is personal. They are telling John and people like John that they do not matter, they do not count. This is abhorrent. Do you want to look John in the face and tell him that his life does not matter?

What can we do? Speak up. Stand up for people with Down syndrome.

CMS is seeking public comments on this proposal, and it is important that we send a message to them loud and clear that their proposed discrimination against people with Down syndrome is unfair and unacceptable. 

Down Syndrome Affiliates in Action (DSAIA), GiGi’s Playhouse Down Syndrome Achievement Centers, Global Down Syndrome Foundation (Global), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG) have launched a coordinated effort to catalyze a community-wide response. John’s Crazy Socks stands with this coalition. We urge you to join us.

Submitting a comment to CMS is easy and takes only a few minutes, but it must be done prior to February 9, 2022. You can see a step-by-step guide, including key talking points and examples of comments, on the NDSS website

Thank you for your help. You can make a difference for people like John and all people with Down syndrome. They deserve equal access to a drug that can make such a difference in their lives.

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Stop the Centers for Medicare and Medicaid Services (CMS) from Denying