WASHINGTON, D.C., July 19, 2023 — Alzheimer’s advocate Sue Wronsky recently shared her story with Congress during a House Energy and Commerce Health Subcommittee hearing. In her testimony, she advocated for unrestricted Centers for Medicare & Medicaid Services (CMS) coverage for Alzheimer’s treatments that are approved by the Food and Drug Administration (FDA). Joined by her fellow advocates and receiving bipartisan congressional support, Wronsky testified before the subcommittee about what treatment coverage without barriers would mean for the Alzheimer’s community.
“When my mom was first diagnosed over 30 years ago, there were no options for people living with Alzheimer’s,” said Sue Wronsky. “I’m an advocate to honor both of my parents, but especially to carry the torch for my father who wanted nothing more than for a breakthrough to be found during his lifetime. This wasn’t to be, as we lost him in 2013. But I’ve got some time left on this earth, and I’d like nothing more during my lifetime than to witness the end to this terrible disease that he longed to see.”
Over the last few years, thanks to bipartisan support in Congress for increased National Institutes of Health (NIH) funding, there has been substantial progress in Alzheimer’s and dementia research. In the last year and a half, two Alzheimer’s treatments have been approved by the FDA. Earlier this month, the FDA granted traditional approval of lecanemab for the treatment of early Alzheimer’s disease. This is the first Alzheimer’s treatment granted traditional approval that changes the underlying course of the disease.
“The scientific progress has been momentous in the fight against Alzheimer’s,” said Wronsky. “However, we as Alzheimer’s advocates have had to raise our collective voices to ensure Medicare covers these FDA-approved treatments.”
“Thank you to Sue Wronsky and all of our Alzheimer’s Association advocates, who have been passionately sharing their stories in congressional meetings and in rallies at the White House and across all 50 states,” said Robert Egge, Alzheimer’s Association chief public policy officer and Alzheimer’s Impact Movement (AIM) executive director. “Thanks to their relentless advocacy and the bipartisan support of congressional champions, CMS recently announced they will enable coverage of FDA traditionally approved Alzheimer’s treatments through a low touch registry. While we appreciate CMS’ efforts to minimize physician burden, we continue to believe registries should not be a requirement for coverage of an FDA-approved treatment.”
During the hearing, members from both sides of the aisle shared their personal connection to Alzheimer’s and thanked Wronsky for testifying and sharing her perspective as an Alzheimer’s caregiver and advocate.
During his opening remarks, Chairman Brett Guthrie (R-Ky.) spoke about Alzheimer’s and the CMS decision. “Despite the historic advances in the treatment of Alzheimer’s disease, the Biden Administration has decided to limit access to these therapies through onerous coverage policies that require patients and their providers to take great lengths in order to administer and gain access to these drugs. I remain extremely frustrated by the Biden Administration’s restrictive approach to addressing this vicious disease. The costs associated with treating patients earlier in the disease might not only potentially save Medicare money, but more importantly, it will also give these patients more time with their families until more effective treatments are developed,” said Guthrie.
“We remain disappointed that CMS has not initiated the formal process to reconsider their
National Coverage Determination policy, but we will continue to work with the administration and Congress to ensure the initiation of this process,” said Egge.
During the hearing, subcommittee Ranking Member Anna Eshoo (D-Calif.) spoke about the need for increased predictability in CED requirements. “This unpredictability in CED requirements is partly why there was such a huge outcry over CMS announcing that it would require a CED for new Alzheimer’s treatments. Patients weren’t sure how they were going to get the care they need. It’s also unclear when a CED requirement will end,” said Eshoo.
To conclude her testimony, Sue Wronsky spoke on the critical need for unrestricted access to Alzheimer’s treatments and what it would mean for the Alzheimer’s community.
“The benefits of these treatments will only be realized if patients have access,” said Wronsky. “And, if there had been an FDA-approved treatment back then, my Mom may have been able to spend more time with our family and remain independent. The idea that these individuals can take a medication that can possibly help slow this disease, even for just a few months, is enormous.”
About the Alzheimer's Association
The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia®. Visit alz.org or call 800.272.3900.