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ACTION NEEDED BY FEBRUARY 9, 2022: SUBMIT COMMENTS TO CMS SO PEOPLE WITH DOWN SYNDROME WILL HAVE EQUAL ACCESS TO ALZHEIMER’S DRUGS

People with Down syndrome have a right to health equity, and we need your help to make sure our community can access treatments for Alzheimer’s disease now and in the future. Alzheimer’s disease is an important issue for our community because having a third copy of chromosome 21 greatly increases the risk of developing the disease. There’s no cure for Alzheimer’s disease right now, but treatments are in development. A new one called aducanumab is the first of a new class of treatments.

The Centers for Medicare & Medicaid (CMS) have released a draft proposal which limits coverage for this new class of treatments to people in a specific set of new clinical trials, but people with Down syndrome are not allowed in those trials. Since most people with Down syndrome rely upon Medicare or Medicaid for health insurance, under this proposal their only hope of accessing these potentially lifesaving but very expensive drugs – if their doctor recommends this course of treatment – would be to self-pay or have secondary insurance. Additionally, excluding people with Down syndrome from clinical trials will make it harder for physicians to have the information they need to care for our community.

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), Down Syndrome Medical Interest Group-USA (DSMIG-USA), 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. 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 in advance for using your voice to help fight discrimination and make sure the Down syndrome community has equal access to developments in health care.

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