Passionate Alzheimer’s Association advocates from Western New York joined others from across the nation last week to face U.S. Department of Health and Human Services (HHS) Secretary Xavier Becerra during 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.
Lauren Ashburn, LMSW, the Alzheimer’s Association’s associate director of advocacy for New York State who led the Western New York delegation, says, “The cost of FDA-approved medications comes up in conversation often. To that I say, the cost of the medication for one year, which can slow the progression of the disease up to 18 months, costs the same amount as just two months in a care facility. The point of coverage is not cost, but if we’re talking cost, let’s consider all factors. I don’t think you can put a price on a person living with Alzheimer’s having more time with their loved ones.”
Earlier in the 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.
“During last week’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.”
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. 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.
“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.”
To learn more about Alzheimer’s disease or other dementias, call 800-272-3900 or visit alz.org.