for a floor speechkate johnson another official told advocates if you do not know the answer to a question that is totally ok in that case please always revert to our safest phrase which she said was im not sure but i can pass that question on to a staffer at the alzheimers association who can provide some more informationshe also urged advocates to take photos or screenshots of the congressional meetings to post on social media tagging the lawmaker to show were not going to give up on the issues that were passionate aboutchristopher masak director of advocacy roleplayed being an alzheimers patients son meeting with a lawmakermy mom is living with a fatal disease and the bottom line is i want more time his character said adding thinking of people like my mom who cant access this medication it just it breaks my heartmedicare officials said that limiting coverage to clinical trial participants is especially important because aduhelm is intended for people with early mild disease who could potentially be sacrificing years of remaining function and quality of life if a drugs harms outweigh any benefitmr johns said he understood the view that risk could be better tolerated later in the disease but said that the milder early period is the time many people most want to try to extend cms officials also said aduhelm data isnt sufficiently representative because most trial participants were white while blacks and latinos have greater alzheimers risk so medicares proposal requires that new clinical trials reflect racial and ethnic diversityassociation officials said medicares proposal could have the opposite effect because people in underserved communities might have less access to clinical trial sitesa few issues mentioned by advocacy groups have also been raised by those who dont oppose limiting coverage for aduhelm one is that as currently worded medicares decision would apply to all monoclonal antibodies for alzheimers several of which are in latestage trials and may soon be considered for fda approvalit is essentially denying access to all current and future fdaapproved treatments targeting amyloid in those living with alzheimers disease ms pollack said in one recordingthe american academy of neurology wrote to cms calling the proposal to cover only patients in clinical trials prudently designed to investigate the safety and effectiveness but asked that it be limited only to aduhelm in a statement a cms spokeswoman beth lynk said in february that coverage criteria could be reevaluated for subsequent monoclonal antibodies cms intends to be nimble and respond to new evidence as it is made available especially related to the clinical benefit of future therapeutics she saidmr johns who said that he recently attended three meetings with cms officials including one with the agencys administrator indicated in the interview that the association wouldnt be satisfied if medicares restrictions applied only to aduhelm saying we absolutely believe there is sufficient evidence to provide coverage for the first approved treatmentadvocacy groups efforts have gotten some lawmakers attention recently a bipartisan group of 40