Advocates turn Capitol Hill purple, urge action from lawmakers

Nearly 900 purple-clad Alzheimer’s advocates from all 50 states converged on the nation’s capital on March 21, Hill Day, the culmination of the 2023 Alzheimer’s Impact Movement Advocacy Forum. Advocates met with elected officials to encourage their support for critical legislation and increased federal research funding, in particular urging them to ask the Centers for Medicare and Medicaid Services (CMS) to change its policy of blocking Medicare coverage of FDA-approved Alzheimer’s treatments.

Bonnie Farmer Hay of West Monroe, Louisiana, was part of the delegation that spoke to Sen. Bill Cassidy (R-La.). Hay’s fashionable ensemble featured a cowboy hat and purple boots in honor of her father, who was diagnosed with Alzheimer’s in 1996 at age 48.

She became emotional when talking about her father and why she’s advocating for him and her family, including her mother, who serves as her father’s caregiver. In a display of this devotion, she has a tattoo on the inside of her right wrist of her father’s handwriting spelling out the hashtag #ForeverFighter. Hay is also concerned that she may one day develop the disease, and advocates for herself.

“We still ride horses together, and he sings in the church band,” Hay said. “He wears cowboy boots — he’s all the way cowboy … I don’t want my dad to forget my name. I don’t want to forget my grandbaby and my kids.”

Hay also expressed strong feelings about the CMS coverage decision: “This is my body. This is my mind. If there’s a medication out there for me to help keep my memories, I’m all for it. They have no business making decisions for my health.”

Seeing the hope

Minnesota advocates gathered in the office of Sen. Tina Smith (D-Minn.), a longtime champion of the cause. A mix of caregivers, family members and people living with dementia, the 20-strong contingent shared personal stories and requested Smith’s continued support for important bipartisan legislation such as the NAPA Reauthorization Act and the Comprehensive Care for Alzheimer’s Act. Smith replied with a simple, “Yes.”

Smith, whose mother died from Alzheimer’s in 2016, complimented the advocates on the substantial impact they have on Capitol Hill.

“It creates quite a stir when you’re all in the building,” she said. “That’s good. That’s the way it should work. We’re so blessed that you have the ability to make your voices heard. It makes a big difference. Members of Congress are interested in doing the right thing, and it’s so helpful to have people who can talk about their experience and use that as a way to get us to tell our colleagues to get the work done.”

Minnesota advocate Linda Comb asks for support of Alzheimer's legislation.

Linda Comb of Hamel, Minnesota, was the primary caregiver for her mother, who died from Alzheimer’s at age 75 after living with the disease for seven years. She said it was “horrifying” to witness her mother go through the experience, but it’s also why she’s involved in creating change.

“I’ve been advocating since 2016 — for the first time, I feel like there’s hope,” she said. “The research is working. I advocate for my mom but also for my family. My mom had 12 kids in her family, and seven of them died with Alzheimer’s … I’m here to advocate for all of them and my two daughters.”

‘A slap in the face’

Roger and Jeanne Caldwell, a married couple from Huntington, West Virginia, were part of the group visiting Sen. Shelley Moore Capito (R-W.Va.), who has introduced or signed on to numerous bills advancing the fight. Roger lost one aunt to Alzheimer’s and has another living with the disease; Jeanne endured seeing both of her grandmothers, an aunt and, finally, her mother die from Alzheimer’s.

“Caregivers have to watch their loved one deteriorate slowly. It’s draining mentally and physically,” Roger said. “Jeanne would come home [from caring for her mother] in the evening mentally stressed, and I just wanted to hold her and tell her that everything would be OK. But with Alzheimer’s, it’s never going to be OK.”

Roger said it “means the world” to have an elected official like Capito in their corner but stressed that action must happen sooner than later.

“With the history of Alzheimer’s in Jeanne’s family, it’s always in the back of my mind that it could be her, too,” he said. “We’ve got to find a cure before it’s too late. I’ll take care of her until the day I die, but I don’t want to see her go through this.”

Regarding the CMS decision, Capito resolved to “keep pushing them on it.” Jeanne didn’t mince words about her feelings on the agency’s policy.

“It’s a slap in the face to every caregiver,” she said. “Families have been following the progress on these treatments, and they know they’re out there. To dangle that carrot in front of them and then tell them they’re not worthy, that they can’t have it? It’s cruel.”

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