Alzheimer’s Association Advocates Flood Hearings to Push HHS Secretary to Cover Alzheimer’s Treatments
Washington, D.C., March 22, 2023 — Passionate and purple Alzheimer’s Association advocates from across the nation joined together in Washington, D.C., today to face U.S. Department of Health and Human Services (HHS) Secretary Xavier Becerra during his testimony at two Senate budget hearings. Multiple senators from both sides of the aisle recognized the Alzheimer’s advocates, shared their own connections to Alzheimer’s disease and questioned Secretary Becerra on the Centers for Medicare & Medicaid Services (CMS) decision to block access to Food and Drug Administration (FDA)-approved Alzheimer’s treatments. Medicare has always covered FDA-approved treatments for those living with a disease.
“During today’s budget hearings, Secretary Becerra testified that CMS ‘wants to be there’ for people living with Alzheimer’s,” said Robert Egge, chief public policy officer of the Alzheimer’s Association and AIM executive director. “And to that we say: ‘They easily can be — reverse the decision and provide access now.’ Every day matters. Each day CMS blocks access, more than 2,000 people transition to a more advanced stage of Alzheimer’s where they are no longer eligible for treatment.”
“CMS is blocking and acting as a roadblock for patient access to drugs that could be very helpful to them, particularly in the early stages of this devastating disease,” said Sen. Susan Collins (R-Maine) during today’s Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. “I just don’t understand CMS’s misguided and outright unprecedented decision to not cover a whole class of Alzheimer’s drugs. It’s not CMS’s job to second-guess drug approvals. That’s not what CMS is supposed to do.”
During the Senate Finance budget hearing, committee members questioned Secretary Becerra on a number of topics. Throughout the hearing, many senators from both sides of the aisle took time to recognize and thank the Alzheimer’s Association advocates for their commitment to the cause.
After recognizing her “friends in purple shirts from the Alzheimer’s Association,” Sen. Debbie Stabenow (D-Mich.) noted the progress that has been made in research and delivering support for caregivers. “The next step is making sure that patients have the critical and urgent treatments they need,” she said, before pledging to follow up with Secretary Becerra on access.
“The FDA's accelerated approval pathway has provided a lifeline for countless Americans years before these treatments could come to the market,” said Sen. Mike Crapo (R-Idaho), Ranking Member of the Senate Finance Committee. “This administration has taken unprecedented steps to erode this pathway … This troubling trend began with CMS’s coverage decision for an entire class of Alzheimer's therapies.”
“I am encouraged there is a new class of Alzheimer’s treatments,” said Sen. John Barrasso (R-Wyo.) “It’s giving families some hope that they may have some more quality time with their loved ones before the disease takes hold. It’s not a cure but there’s hope there.” He continued: “[The CMS policy] is requiring additional clinical trials or registries that could create logistical challenges for people in rural areas as well as the providers who are trying to take care of them, because they’re not all eligible based on where you are.” Sen. Barrasso asked Secretary Becerra how CMS is planning on ensuring that those living with Alzheimer’s in rural settings and tribal communities can gain access to these treatments.
In a telling and impactful moment, Senate Finance Committee Chairman Ron Wyden (D-Ore.) recognized the room full of Alzheimer’s advocates again as he adjourned the hearing: “Mr. Secretary, we’ve seen how strongly the committee feels. We’ve seen how strongly the country feels. This is urgent, urgent business,” he said before adding he’d be calling CMS Administrator Chiquita Brooks-LaSure “about speeding up access [to Alzheimer’s treatments].”
“Powerful comments during today’s Senate budget hearings captured the sentiment of millions of Americans: access to FDA-approved Alzheimer’s treatments is indeed ‘urgent, urgent business,’” said Egge. “We are sincerely grateful to the bipartisan members of both committees who used their time to acknowledge the rooms full of Alzheimer’s advocates. And, equally importantly, took that time to urge Secretary Becerra for his support in reversing CMS’ unprecedented decision to treat Americans living with Alzheimer’s differently than every other disease.”
Earlier this week, Alzheimer’s advocates from all 50 states, including people living with Alzheimer’s and their caregivers, traveled to Washington, D.C., to attend the 2023 AIM Advocacy Forum in Washington, D.C. On Monday and Tuesday, they rallied outside the White House and held hundreds of meetings on Capitol Hill to demand a reversal of the Biden Administration’s decision to deny people living with Alzheimer’s access to FDA-approved drugs.
This was not the first showing of broad bipartisan support for this issue. In February, Reps. Darin LaHood (R-Ill.) and Paul Tonko (D-N.Y.) led 72 of their bipartisan colleagues in sending a letter to Secretary Becerra and Administrator Brooks-LaSure emphasizing the importance of access to FDA-approved Alzheimer’s treatments. Sens. Collins and Shelley Moore Capito (R-W.Va.) also led a bipartisan letter in the Senate, signed by 20 bipartisan leaders.