Alzheimer Impact Movement Ask Biden Administration to Allow Medicare Coverage
Wednesday, March 22, 2023
Advocates rally for access to Alzheimer’s treatments
As part of the 2023 Alzheimer’s Impact Movement Advocacy Forum, nearly 900 passionate Alzheimer’s advocates from all 50 states rallied in Washington, D.C.’s Lafayette Square on March 20 — outside the White House — to fight for the reversal of the 2022 Centers for Medicare and Medicaid Services (CMS) decision blocking Medicare coverage of U.S. Food and Drug Administration-approved Alzheimer’s disease treatments that target amyloid.
“Medicare is treating Alzheimer’s completely differently than any other disease,” said Beth McMullen, Alzheimer’s Association senior director of Advocacy, as she welcomed attendees. “This is disease discrimination, and we need President Biden to help us. Let him hear it. We need every member of Congress to hear us. We need CMS to hear us.”
McMullen then posed two vital, recurring questions for advocates:
“What do we want?”
“When do we want it?”
Alzheimer’s Association Chief Diversity, Equity and Inclusion Officer Carl V. Hill, Ph.D., MPH, has devoted his entire career to health equity — defined as eliminating disparities and addressing social determinants of health, thereby assuring people can get the resources they need. He told the crowd that the CMS decision stands in direct opposition.
“If the only way you can access treatments is to pay out of pocket or take out a second mortgage on your house, if the only way you can access FDA-approved treatments is to accrue more debt, that’s not health equity — that’s health care for the rich. That’s health care for the privileged,” he said. “We’re here today to tell the Biden administration that we won’t stand for it.”
Hill led the advocates in another repeated chant: CMS, fix this mess!
Murvell Delpino is a health care professional and a longtime Alzheimer’s advocate on behalf of her clients living with dementia as well as her late grandfather and her sister, who’s living with mild cognitive impairment. Delpino was “fired up” to speak at the rally, and her inspirational words had the same effect on the audience.
“I’ve been working hard, and you all have, too, to ensure we have plenty of funding for Alzheimer’s and dementia research, and we’ve made great progress,” she said. “I’m so proud of each and every one of us for bringing us to this moment where we can have hope because we have treatments, but we need more than hope. People who need these treatments have been denied access.”
Advocates loudly repeated her exhortation: That’s not right!
Tony Gonzales, a member of the Alzheimer’s Association National Early-Stage Advisory Group and the Alzheimer’s Association National Board, was diagnosed with mild cognitive impairment in 2021 at age 47. His emotional remarks centered around that having access to treatments would give people living with Alzheimer’s or another dementia more time to experience things important to them.
“What does more time mean for me? It means I’ll be able to walk my beautiful daughter down the aisle,” Gonzales said. “That’s my right as a father. I need more time for that. My grandson is 2 years old. I want to have the same cognitive function I have right now when he’s 3. I’m not asking for a miracle — I’m asking for more time.
“Mr. President, I need your help! I’m a good American! These are good people! We need your help!”
Advocacy Forum chair Joe Arciniega closed the rally with a startling statistic: In the 348 days (as of March 20) since CMS blocked access to treatments, 696,000 people living with Alzheimer’s or have transitioned beyond being eligible for them.
“This is simply unacceptable,” Arciniega said.
Throughout the Forum, Arciniega has been imploring advocates to push for treatment access with one simple word: adelante (Spanish for “forward”).
“Say it with me so that CMS can hear us,” he said. “Say it loud so that every congressman and senator can hear us. Say it one last time so that President Biden and the Biden administration can hear us.”
Adelante! Adelante! Adelante!