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March 24, 2022 

LuMind IDSC President and CEO Hampus Hillerstrom contributed to UsAgainstAlzheimer’s and the Global Alzheimer’s Platform Foundation’s recent statement in opposition to the proposed rule by the Centers for Medicare and Medicaid Services (CMS) that would deny millions of patients—including people with Down syndrome—access to life-saving Alzheimer’s treatments and clinical trials. In the statement, the organizations reveal a map showing that in 22 states, representing nearly 54 million people, there are no trial sites that would meet CMS’ guidelines for conducting clinical trials. The most affected populations would be those of low income, patients with comorbidities such as Down syndrome, people of color, and those living in rural areas where access to healthcare is already a challenge.

“The lifetime risk of Alzheimer’s for people with Down syndrome is 90% and Alzheimer’s is the leading cause of death for adults with Down syndrome,” said Hillerstrom in the statement. “Alzheimer’s is a crisis for our population and CMS should not make a coverage decision for the anti-amyloid class of drugs that prevents access to these treatments to adults with Down syndrome.”

As previously identified in our official statement in response to the draft decision by CMS, LuMind IDSC calls on CMS to change this draft decision to:

  • Broaden CMS coverage of this and future drugs beyond clinical trials;
  • Expand coverage to include all people with Down syndrome;
  • Clarify that people under Medicaid would also be covered (not only under Medicare);
  • Explicitly include people with Down syndrome in the coverage language.

See the full press release from UsAgainstAlzheimer’s and the Global Alliance Platform Foundation below, or click here to read it on the UsAgainstAlzheimer’s website.