Earlier this month, Medicare finalized its decision to restrict coverage of a new Alzheimer’s drug to patients enrolled in clinical trials. Those patients now include people with Down syndrome, but that wasn’t always the case. 

"So there's about a 90% risk of developing Alzheimer's if you have Down syndrome, " said Margot Rhondeau, with the National Down Syndrome Society. 

And a drug like Aduhelm, despite the controversy surrounding its benefits, offers some hope. So, when the Centers for Medicare and Medicaid, known as CMS, initially excluded this population in January, Rhondeau says her organization and others refused to accept that decision. 

"So when the comment period opened, 1800 comments were made only about Down syndrome. And I think that that just shows the power of our voice and the power of saying, 'You can't do this. You can't exclude us.' And so CMS did remove the exclusion."

The hurdle now: Those running the trials don’t have to include people with Down syndrome.