POSTED April 2022: Your advocacy is making a difference! The Down Syndrome Coalition, along with our colleagues from the Down Syndrome Diagnosis Network (DSDN), Down Syndrome Medical Interest Group-USA (DSMIG), International Mosaic Down Syndrome Association (IMDSA), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG), and in partnership with our self-advocates and families, succeeded in removing discriminatory language from an important healthcare coverage determination that would have excluded people with Down syndrome from clinical trials for a new class of Alzheimer’s treatments. With more than 1,800 individual comments submitted by the Down syndrome community, this community’s voice was too loud to ignore, and we are one step closer to our goal of making sure adults with Down syndrome have equitable access to treatment options for Alzheimer's disease.
Together we strive to ensure that governmental entities, such as Centers for Medicare & Medicaid Services (CMS), the Food and Drug Administration (FDA), and the National Institutes of Health (NIH), as well as private pharmaceutical companies, are all working to provide equitable access to Alzheimer’s treatments for the Down syndrome community now and in the future. This work is critical because it is estimated that the lifetime risk for people with Down syndrome to develop Alzheimer’s disease is over 90%. Alzheimer’s disease is the leading cause of death for members of our community. The next phase of our collective advocacy must be focused on supporting the inclusion of people with Down syndrome in clinical trials for Alzheimer’s treatments.
The Down Syndrome Coalition includes the following national organizations (in alphabetical order): 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), and the National Down Syndrome Society (NDSS).
POSTED March 2022: In 2021, the medication aducanumab was approved for treatment for Alzheimer’s disease. There was a great deal of discussion about the medication, the approval process, and the overall assessment of the risks and benefits. A major concern for the Down syndrome (DS) community was that the medication was not studied in people with DS. The National Task Group on Intellectual Disabilities and Dementia Practices posted a consensus statement at that time that multiple organizations signed on including DSMIG-USA that recommended caution if considering prescribing the medication and encouraged research specifically for people with DS. https://www.dsmig-usa.org/resources/Documents/NTG%20Consensus%20Statement.pdf
Subsequently, in 2022, the Centers for Medicare and Medicaid Services (CMS) reported that it was considering a proposed plan to exclude people with DS from coverage for this and future medications in this class of medications. NTG has updated their statement and the DSMIG board has reviewed and sent a note of agreement and support to NTG. This statement recommends more study but also recommends NOT excluding people with DS from the indefinite use of this class of medications https://www.the-ntg.org/
The GLOBAL Medical Care Guidelines for Adults with Down Syndrome provide first of-kind, evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome. This life-changing resource as published in JAMA covers 9 topic areas deemed critically important for the health and well-being of adults with Down syndrome and outlines critical future research needs. Adults with Down syndrome and their caregivers should review the GLOBAL Guidelines with their clinicians to ensure they are receiving care meeting best-practice standards for adults with Down syndrome! Check out the Guidelines page here.
DSMIG-USA endorses Consensus Statement on Aducanumab and Persons with Down Syndrome in conjunction with the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). Read the full statement here.
The first-in-kind Global Guideline was peer reviewed, edited, and published in the Special Communication section of the print and online October 2020 issue of JAMA, the Journal of the American Medical Association. DSMIG Members who participated are Peter Bulova, MD; George Capone, MD; Brian Chicoine, MD; Bryn Gelaro, MA, LSW; Barry A. Martin, MD; Dennis E. McGuire, PhD, LCSW; Kent D. McKelvey, MD; Moya Peterson, PhD, APRN, FNP-BC; and Michelle Sie Whitten, MA. The full abstract can be accessed here.
The published results of the national, randomized control trial of Down Syndrome Clinic to You (DSC2U) is available in the Nature journal, Genetics in Medicine. Dr. Jeanhee Chung is the first author on this manuscript, but, you will also recognize several other DSMIG-USA members who are co-authors: Dr. Allie Schwartz, Dr. Marilyn Bull, and Dr. Brian Chicoine. The full article can be accessed here.