Action NEEDED by February 9

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Hope is 6 years old. We think about what life will look like for her when she turns 18, but we don’t worry too much at this point because a lot can change between now and then. We also know that she has a 90% chance of developing Alzheimer’s disease (AD) simply because she has three copies of her 21st chromosome, but again, this won’t occur until she’s at least 40 years old, which is certainly young but also very far off, and I struggle to think scientists won’t have a treatment by then.

What I hadn’t considered until this week was that scientists will have a treatment for AD by the year 2055 but that the treatment will be inaccessible to people with Down syndrome. Right now the Centers for Medicare & Medicaid Services (CMS) is drafting guidelines for their Coverage with Evidence Development (CED) in the use of the new AD drug, aducanumab, which means CMS is going through its own trials to determine whether it will be efficacious, as a federally funded resource, to cover aducanumab for plan recipients. The drafted CED for aducanumab as it stands now excludes people with Down syndrome and other intellectual and developmental disabilities (I/DD), which means down the line having not been included in these trials they may stand further exclusion from coverage.

From the National Down Syndrome Society:

Down Syndrome Affiliates in Action (DSAIA), Gigi’s Playhouse, 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) are collaborating to catalyze a community-wide response to the draft decision. Because of how significant the impact of Alzheimer’s disease is on our community, it’s critical that we come together and share a common message to combat this discrimination and protect our community’s access to treatment for Alzheimer’s disease.


  1. Click on the following link: This link will take you to the CMS webpage with the proposed coverage determination itself and public comment process.
  2. Click on the blue “Comment” button at the top right side of the page.
  3. Fill out your information and add your comment. It’s critical that our community share a common message. To make sure that each person’s comment is counted, however, it’s important that everyone use their own words. To help, we’re sharing these talking points and a few samples:
    • CMS must abandon the proposed CED process because it  discriminates against people with I/DD now and into the future. At the very least, the proposed decision will leave an entire generation of people with Down syndrome without any meaningful access to Alzheimer’s treatment.​
    • Having Down syndrome should not prevent a patient from accessing Alzheimer’s treatments. As a matter of health equity, if CMS covers Alzheimer’s treatments for any Medicare/Medicaid recipients, then it must cover these treatments for all of them. When a physician determines that a treatment is right for a covered patient, then that patient should have access regardless of race, ethnicity, religion, income, geography, gender identity, sexual orientation, or disability.
  4. Submit your comment.

I have public commenting open at the bottom of this post if you have questions or ideas you’d like to share. But please remember, to have an impact you must submit your feedback to CMS by Wednesday, February 9, 2022.

Thank you.

Hope’s mom, who when she is 70 years old does not want to fight for her daughter’s access to Alzheimer’s treatment.

NDSS-Provided Samples:


Hello, my name is Chloe, and I live in Ohio. I’m 26 years old, and I have Down syndrome. I live at home with my family and work part-time. I receive health insurance and other services through Medicare and Medicaid. I should have the same right to health care as anyone else, so when I read that there’s a new treatment for Alzheimer’s disease that I might need later in life, and that people like me were left out, I decided to speak out. CMS must not exclude me and other people with disabilities from coverage. They shouldn’t deny us coverage just because we have disabilities.


Hello, I’m Jane Doe, and I live in Virginia. I have an adult son named Jason who has Down syndrome, and, as I’m getting older myself, Jason and I need to plan now for his future. I know that he’s more likely than other people to develop Alzheimer’s disease, so even though there’s no cure now, it’s very important to me that he has access to any treatments that will be developed in the future. I’ve become aware that the Centers for Medicare & Medicaid Services might exclude him from clinical trials related to new Alzheimer’s treatments. I strongly believe that CMS should not move forward with any coverage process that excludes people with Down syndrome and other disabilities. If people on Medicare or Medicaid without disabilities can access new treatments, people with disabilities who are covered should have the same access.


Hello, my name is John Doe, and I’m from Boston. I believe that people with Down syndrome and other disabilities should have the same right to health care as everyone else. I have recently become aware of a new Alzheimer’s drug called aducanumab and that CMS has proposed coverage that excludes people with Down syndrome and other intellectual and developmental disabilities. I understand the need to make sure treatments are safe, but this is the wrong path forward. CMS must abandon the proposed CED process because it discriminates against people with intellectual and developmental disabilities now and into the future. Having Down syndrome should not prevent a patient from accessing Alzheimer’s treatments. If one patient covered by Medicare or Medicaid can access an Alzheimer’s treatment, every patient covered by Medicare or Medicaid should be able to if their doctor believes it’s right for them.

One response to “Action NEEDED by February 9

  1. My comment:

    The exclusion of people with I/DD–in particular those with Down syndrome–from the CED for aducanumab is extremely worrisome, not only for my family and our friends, but for the conscience of our society and the health of our critical federally funded medical programs. What is the scientific reasoning behind this exclusion and what is the parallel track or comparable study that will ensure all Medicare/Medicaid recipients will have equal access to aducanumab within the same time frame, should the treatment reach approval following CMS trials? We have a six-year-old little girl with Down syndrome and we know that AD is a real potential threat for her. Please do not complicate what will already be an arduous journey should she develop, alongside 90% of her friends with DS, Alzheimer’s disease.

    Thank you sincerely for taking our comment into consideration and for ensuring equitable access to health care for all people.


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