The DS Coalition succeeded in having CMS remove 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 drug therapeutics. The next phase of the Coalition's collective advocacy will be focused on supporting the inclusion of people with Down syndrome in safety trials for upcoming Alzheimer’s drug treatments.
More action is being planned to ensure equity in access to therapeutics to treat Alzheimer's disease in people with Down Syndrome and inclusion in drug registries. To read more about the CMS decision and the rationale behind the arguments raised by the Coalition, please go the LuMind IDSC Explainer (issued April 15, 2022) and noted below.
The NTG concurs with information in the EXPLAINER issued by the LuMind IDSC Foundation - which can be accessed here.