Alzheimer’s Association and Advocates Urge HHS Secretary to Cover Alzheimer’s Treatments
Washington, D.C., March 29, 2023 — Alzheimer’s Association advocates put on their purple and came together in Washington, D.C., this week for U.S. Department of Health and Human Services (HHS) Secretary Xavier Becerra’s testimony during House budget hearings. Adding to the momentum from last week’s AIM Advocacy Forum and budget hearings in the Senate, Members of Congress from both sides of the aisle welcomed Alzheimer’s advocates and urged Secretary Becerra to reverse the Centers for Medicare & Medicaid Services (CMS) decision blocking access to Food and Drug Administration (FDA)-approved Alzheimer’s treatments.
“Thank you to the bipartisan members of Congress for standing up for the Alzheimer’s community and calling on Secretary Becerra to reverse the CMS decision to provide access to FDA-approved Alzheimer’s treatments,” said Robert Egge, chief public policy officer of the Alzheimer’s Association and AIM executive director. “We’re not ‘getting to the point’ of effective Alzheimer’s treatments as Secretary Becerra said, we’re at the point. FDA-approved drugs can give people living with early Alzheimer’s more time with their loved ones, yet CMS refuses to acknowledge the scientific evidence and provide access to these treatments.”
Medicare has always covered FDA-approved treatments. 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.
During today’s House Committee on Energy and Commerce Health Subcommittee’s hearing, Chairman Brett Guthrie (R-Ky.) recognized the Alzheimer’s Association advocates and highlighted the impact the CMS policy is having on health equity. “[CMS] recently declined to cover an entire class of FDA-approved Alzheimer’s treatments for Medicare patients," Guthrie said. "This significantly reduces access to care for minority and rural patient populations with no other options to treat this treacherous disease.”
Rep. Nanette Diaz Barragán (D-Calif.) also recognized the Alzheimer’s Association advocates and stood with them in support of access to FDA-approved Alzheimer’s treatments. “I disagree with CMS’s coverage decision to tightly restrict coverage for an entire class of FDA-approved Alzheimer’s drugs," Barragán said. "And I continue to say I think there is a huge disconnect when the FDA can approve a drug and that CMS will not cover that drug.” The congresswoman also shared that the issue is personal to her. “My mother has Alzheimer’s. She’s 82. We also know Alzheimer’s is one of the biggest threats we have, especially in our Latino communities who are at [greater] risk of developing this.”
During the House Ways & Means Committee budget hearing on Tuesday, Rep. Brian Fitzpatrick (R-Pa.) told Secretary Becerra about the real world impact the CMS policy is having on his constituent, Phil Gutis. Diagnosed with early onset Alzheimer’s seven years ago, “[Phil] will receive two more infusions as part of [a clinical] trial, and then because of the discriminatory and unprecedented decision by CMS not to cover this drug and FDA-approved drugs like it, he will be faced with either wiping out his retirement savings to pay for the drug on his own outside of Medicare or go without treatment altogether,” said Fitzpatrick. The congressman then asked Secretary Becerra, “What does the administration have to say to the millions of patients, caregivers and families who will be denied access to these breakthrough treatments like my constituent Phil and many other people like him across America? And what is the administration doing to ensure access to these FDA-approved drugs will be provided to our seniors?”
Secretary Becerra responded to this and similar questions by reiterating that CMS and the FDA have different sets of standards. However, Rep. Gus Bilirakis (R-Fla.) pointed out, “How is it possible for CMS to prejudge an entire class of drugs as not being ‘reasonable and necessary’ for seniors after the FDA approves these very drugs as ‘safe and effective’ for patients with Alzheimer’s? This is hope for our Alzheimer’s patients. It’s hope for families and caregivers. So please, sir, answer the question and let’s reverse this ruling by CMS.”
Rep. John Joyce, M.D. (R-Pa.) also pointed out the limited access to new Alzheimer’s treatments is unprecedented, and asked Secretary Becerra how many times CMS has imposed similar restrictions on other FDA-approved treatments. “We both know the answer is zero,” said Joyce. “Why restrict one medicine which has such a huge impact on so many American patients and citizens, families who care for individuals with Alzheimer’s — why exclude this one specific disease?”
House Committee on Energy and Commerce Chairwoman Cathy McMorris Rodgers (R-Wash.) reaffirmed her commitment to securing access to Alzheimer’s treatments. “We are going to continue to press you on this because when we finally get these breakthrough drugs, we must make them available to the people that are depending upon these drugs to give them hope,” said Rodgers.
“Thank you to our advocates who attended these budget hearings and to those across the nation for your commitment to this critical mission,” said Egge. “Our conviction to relentlessly pursue access to Alzheimer’s treatments will not waver until people have access to the FDA-approved Alzheimer’s treatments they need and deserve.”
Last week, Alzheimer’s advocates from all 50 states 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. On Wednesday, passionate Alzheimer’s advocates faced Secretary Becerra during his testimony at two Senate budget hearings.
This issue has received broad bipartisan support. In February, Reps. Darin LaHood (R-Ill.) and Paul Tonko (D-N.Y.) led a letter to Secretary Becerra and CMS Administrator Chiquita Brooks-LaSure emphasizing the importance of access to FDA-approved Alzheimer’s treatments, which was signed by 72 of their bipartisan colleagues. Sens. Susan Collins (R-Maine) and Shelley Moore Capito (R-W.Va.) also led a bipartisan letter in the Senate, signed by 20 bipartisan leaders.
