After an eventful day of preparing for visits with legislators and rallying against the lack of Medicare coverage for Alzheimer’s treatments, nearly 900 advocates from all 50 states celebrated accomplishments in the fight against the disease — and recognized some of the movement's heroes — at the National Alzheimer’s Dinner.
CNN anchor and correspondent and Alzheimer’s Association Celebrity Champion Amara Walker served as emcee. This year’s Forum was Walker’s first; befitting her profession, she did some investigative reporting on what to expect.
“I asked what I should know before I came — about this event and about all of you,” she said. “I heard about your passion. I heard about your determination. I heard about your ability to collaborate. But most of all, I heard about how years of very hard work and your drive to never give up have brought us here — to what is the most important Advocacy Forum we’ve ever had.”
Walker’s mother — Omma in Korean — is 75 and living in the middle stages of Alzheimer’s, and her 80-year-old father is a caregiver. For Walker, this has prompted thoughts of how things might be different if Omma had access to a meaningful treatment.
“Would we have had a few more lucid years with my mom where we could have aptly prepared for her condition today?” Walker asked. “Could my children have gotten to experience my mother’s warmth and love and her silly personality even for a couple more years? Could treatment have lessened the burden for my dad? Because of all of you, we’re on our way.”
Alzheimer's Association and Alzheimer’s Impact Movement President and CEO Dr. Joanne Pike presented the evening’s first 2023 AIM Humanitarian Award to Sen. Susan Collins (R-Maine).
“In the challenges we’ve faced this year, we’ve needed support more than ever,” Pike said. “We’ve relied on the commitment of our champions in Congress, and they have answered that call. I can think of no one — absolutely no one — who is more committed to this cause than Sen. Collins.”
Collins started the Congressional Task Force on Alzheimer’s in 1999, creating a path to elevate Alzheimer’s issues with fellow lawmakers. She has introduced and supported an extensive list of bipartisan Alzheimer’s-related legislation, including the HOPE for Alzheimer’s Act, the Younger Onset Alzheimer’s Disease Act and the National Alzheimer’s Project Act. In January of this year, she helped reintroduce the NAPA Reauthorization Act and the Alzheimer’s Accountability and Investment Act, legislation that will continue the work of the National Plan to Address Alzheimer’s Disease through 2035 and maintain the Alzheimer’s Bypass Budget process to ensure appropriate levels of federal research funding.
Sen. Susan Collins (R-Maine) receives the AIM Humanitarian of the Year Award.
An outspoken advocate for ensuring access to FDA-approved Alzheimer’s treatments, Collins also led a bipartisan letter asking CMS to reconsider its coverage decision.
“It’s not the CMS’ job to second-guess the FDA,” Collins said. “CMS’ refusal to reconsider its misguided coverage policy means that promising FDA-approved treatments will continue to be out of reach for most patients who might benefit from them.
“While more work remains, we’ve made tremendous progress in boosting funding in recent years for Alzheimer’s research,” she concluded. “I can’t tell you gratifying it is to look out at 900 people and know that we’re going to work together to get the job done.”
Karyne Jones, a member of the Association’s national board, announced the night’s second 2023 AIM Humanitarian Award to Sen. Amy Klobuchar (D-Minn.). Klobuchar has supported numerous critical legislative priorities, including the HOPE for Alzheimer’s Act, the Improving HOPE for Alzheimer’s Act and the BOLD Infrastructure for Alzheimer’s Act, and has helped to move funding to the levels researchers say is needed to achieve breakthroughs.
Klobuchar lost her father, a longtime award-winning Minnesota newspaper columnist, to Alzheimer’s in 2021. Her family’s experience with the disease is what has inspired her to get involved in the cause.
“It’s why I’ve worked with my colleagues on both sides of the aisle to secure significant funding increases for Alzheimer’s and related dementia research,” said Klobuchar, who accepted the award via video. “We need these investments to find effective treatments and, eventually, a cure.
“I’m proud to be your partner in Washington fighting for the millions of Americans who are navigating this heartbreaking disease. Together, I’m confident we can support people living with the disease and their caregivers, develop more treatments and save lives.”
The evening’s final award, the 2023 AIM Advocate of the Year, honored Jay Reinstein of North Carolina, who’s living with younger-onset Alzheimer’s. As an Alzheimer’s Association Ambassador and State Champion, a Walk to End Alzheimer’s® team captain and an Alzheimer’s Association National Early-Stage Advisor, he tirelessly shares how access to treatments could impact him, his family and others.
“This last year has resulted in my most fervent and most frustrating year of advocacy,” Reinstein said. “As a good candidate for two Alzheimer’s drugs that have been approved by the FDA, I had hope for more time with my loved ones. Unfortunately, until we get CMS to provide coverage for these drugs, people like me are losing precious time to slow the disease. CMS, fix this mess!”
Alzheimer’s Association Chief Public Policy Officer and AIM Executive Director Robert Egge closed the dinner program by reiterating how coverage of treatments will give people living with the disease more time and encouraged advocates to make “good trouble” during Hill Days visits with legislators.
“We’re asking for coverage of treatments — not more than for other diseases. Just treat us the same. That’s it,” Egge said. “We’re asking for people like Jay, and for their families, who only want an opportunity for more time together.
“I can’t wait to see how you — all of you — are going to lead us through this next phase of our work through your advocacy on the Hill tomorrow and when you return home to your communities. I can’t wait to be back here with you next year to celebrate all we’ve fought for, and all we’ve achieved together.”