In communities across the nation, passionate Alzheimer’s advocates put on their purple, picked up their signs and rallied for access to Food and Drug Administration (FDA)-approved Alzheimer’s treatments over the last couple of weeks. Advocates joined together outside of each of the 10 Centers for Medicare & Medicaid Services regional offices and the U.S. Department of Health and Human Services (HHS) headquarters in Washington, D.C., to have their voices heard.
Every day without access to FDA-approved drugs, more than 2,000 people transition to a more advanced stage of Alzheimer’s where they are no longer eligible for treatment. Hundreds of Alzheimer’s advocates made it loud and clear to CMS that it is past time they change this unjust policy.
The rallies kicked off in Chicago on May 10, where more than 150 advocates joined together and heard from patient advocates and other volunteers. The group walked to the CMS regional office building, calling on CMS for #AccessNow and #MoreTime.
Mark Zumdahl spoke at the rally about the real-world impact of this unjust CMS decision. “My brother was just diagnosed with Alzheimer’s and would greatly benefit from these treatments. Because CMS is blocking access to these treatments, only the very rich can afford them. And that's not right," said Zumdahl.
Following Chicago, advocates across the nation attended Rallies for Access in Kansas City, Atlanta, Philadelphia, Seattle, Denver, Dallas, New York, San Francisco and Boston, with the rallies wrapping up in Washington, D.C., at the HHS headquarters.
A special guest spoke to Alzheimer’s advocates in Washington, D.C., Congresswoman Nanette Diaz Barragán (D-Calif.). Barragán thanked the passionate advocates for their dedication, shared her personal connection to the disease, and reiterated her strong support for access to FDA-approved Alzheimer’s treatments. Bipartisan members of Congress have called on CMS to reverse this unfair, unjust decision.
Barragán said the CMS decision is hurting “Americans, and family members, and people that you and I love every single day by not providing access. It’s wrong that the FDA can approve a drug and then CMS says that it’s not reasonable or necessary.”
Joanne Pike, Alzheimer’s Association president and CEO, attended the D.C. rally and emphasized why the Alzheimer’s Association is standing up with our advocates and taking action. “What we’re advocating for — equitable access to FDA-approved treatments — isn’t asking for special treatment. No, what we’re asking for, what we’re demanding, is what is right. It’s what CMS has done for all other FDA-approved treatments,” said Pike.
Although these rallies occurred in different regions across the country, they all shared the same message for CMS: “CMS, fix this mess!” and stop blocking access to FDA-approved treatments. CMS’ role is to provide health care coverage. Their role is not to stand between a patient and a doctor when deciding what FDA-approved treatments are appropriate. Their role is not to single out people living with Alzheimer’s and decide that their lives, their independence and their memories are unnecessary.
View the highlights from across the nation below, follow along online at #AccessNow and #MoreTime, and take action today by signing our petition or asking your member of Congress to urge CMS to change its decision.
Contact your local chapter to learn how you can get involved in your community and how you can be part of additional Rallies for Access happening across the country in all 50 states in June.