More than 1,200 advocates from all 50 states stormed Capitol Hill on April 2 in the culmination of the 2019 Alzheimer's Impact Movement Advocacy Forum. After two days of preparation, the advocates, donning purple sashes, were armed with a clear message for lawmakers: "The federal government must take bold action now to confront the Alzheimer's crisis."
The advocates came to Washington, D.C., determined to build on the successes they helped to achieve in 2018, including two historic increases in federal research funding at the National Institutes of Health (NIH) and the BOLD Infrastructure for Alzheimer's Act, which will create a public health infrastructure nationwide to implement effective Alzheimer's interventions, being signed into law.
"Coming to Forum is so exciting because you realize how many people are working toward the same goal," said Jan Johnson of Bucyrus, Kansas, who spent years as a caregiver for her mother and husband, both of whom were living with Alzheimer's, while also caring for her father with health issues and raising a teenage son. "We all have different parts to play, but you feel energized knowing that this is working. Our elected officials are listening to us and taking action."
Johnson and a dozen other advocates in the Kansas delegation arrived at their meeting with Sen. Jerry Moran (R-Kan.) to share their stories and ask for his continued support. Among the requests was to co-sponsor the Improving HOPE for Alzheimer's Act, which would help educate clinicians on Alzheimer's and dementia care planning services through Medicare. The advocates also thanked Sen. Moran for championing the Alzheimer's cause. The senator expressed his gratitude in return.
"My interest in this topic comes from an interest in people," Moran said, "and my knowledge comes from the people in this room."
Across the Hill, first-time advocates Marvin and LeeAnn Curry of Beloit, Wisconsin, along with their two teenage daughters, Shelby and Savannah, met with Rep. Mark Pocan (D-Wis.). Marvin was diagnosed with younger-onset Alzheimer's three years ago at age 57. Marvin asked Rep. Pocan to support an additional $350 million in fiscal year 2020 for Alzheimer's research at NIH. Pocan and his staff assured the advocates that they're significant supporters of the cause and that they want to see Alzheimer's research funding continue to increase.
The Washington State delegation had its last meeting of the day with Sen. Patty Murray (D-Wash.). The group included Myriam Marquez of Seattle, who was diagnosed with Alzheimer's in 2009 and is an Alzheimer's Association Ambassador to Sen. Murray.
Marquez and her fellow advocates thanked Murray, a leading ally for the cause, for all she's done and asked her to co-sponsor the Younger-Onset Alzheimer's Disease Act of 2019, which would allow individuals under the age of 60 to access programs under the Older Americans Act. Murray said she would be happy to look at the bill.
While Marquez will retire her purple sash after this Forum, her seventh, she approached her final meeting with a fighting spirit. "There are a lot of things that are going on with research, but there isn't anything right now to stop Alzheimer's or slow it down," said Marquez. "I feel like I'm a warrior fighting as hard as I can for my children and grandchildren. I'm doing everything I can to raise awareness."
Advocates pack room for hearing on new pathways in research and care
In addition to meeting with their elected officials, advocates attended a Senate Special Committee on Aging hearing titled "Alzheimer's: New Directions in Biomedical Research and Caregiving." The hearing room quickly filled to capacity with an overflow of purple-clad advocates waiting in the hallway to overhear testimony.
Chairwoman Sen. Susan Collins (R-Maine) began by addressing the promise created through increased funding for Alzheimer's research, most notably the record $425 million increase approved by Congress in September 2018. She also spoke about opportunities for discovery as the field explores myriad new pathways that could lead to earlier detection and potential therapies.
"From the ocular and the cardiovascular, to the genome and the microbiome, and the immune and lymphatic system, researchers are leaving no system unexamined and no cell unturned," Collins said.
Dr. Sharon Fekrat, a professor of ophthalmology at Duke University of Medicine, testified about her team's new research into retinal imaging technology that may be able to diagnose preclinical Alzheimer's. Current studies suggest that the neurodegenerative process in the brain may also occur in the retina with the thinning of certain layers.
"Right now, these eye tests cannot be solely used to diagnose Alzheimer's disease," Fekrat said. "However, this is the beginning of something big, and more work needs to be done."
Dr. Richard Hodes, director of the National Institute on Aging at the NIH, shared how increased funding has created significant opportunities for existing scientists while attracting new researchers to the field.
"Thanks to the efforts of an expanding community of scientists, we have important progress to report on our understanding of the disease and more promising pathways to prevention and effective treatment," Hodes said. "Our hope for a cure has never been stronger, as new resources and initiatives are allowing the scientific community to redouble their efforts."
The committee and witnesses acknowledged that while research is key to ending Alzheimer's, individuals and families need access to better diagnosis and care. Mary Hartt, an advocate from Maine, testified about the importance of care planning after her husband, Mike, was diagnosed with younger-onset Alzheimer's.
"For us, this plan came in pieces and with the help of our team of care providers at Massachusetts General Hospital," Hartt said. "Mike's diagnosis at 62 was a shock, but working with the team of care providers gave us time to talk through the reality of the situation and plan for the challenges that lie ahead."
Clay Jacobs, executive director of the Alzheimer's Association Greater Pennsylvania Chapter, echoed Hartt's sentiments.
"Care planning is essential to learning about medical and nonmedical treatments, clinical trials and support services. These services result in fewer hospitalizations and emergency room visits, and a higher quality of life," Jacobs said. "It is also true for caregivers, who too often find themselves serving as 'the plan' with little support after a diagnosis."
After opening statements, witnesses received questions from committee members. Collins and and Ranking Member Sen. Bob Casey (D-Pa.) were joined by Sen. Richard Blumenthal (D-Conn.), Sen. Mike Braun (R-Ind.), Sen. Kirsten Gillibrand (D-N.Y.), Sen. Josh Hawley (R-Mo.), Sen. Doug Jones (D-Ala.), Sen. Martha McSally (R-Ariz.), , Sen. Tim Scott (R-S.C.), Sen. Jacky Rosen (D-Nev.) and Sen. Kyrsten Sinema (D-Ariz.).