A record number of Alzheimer's advocates — nearly 1,200 — met in Washington, D.C., April 4-6 for the 2016 Alzheimer's Association Advocacy Forum. On the morning of Tuesday, April 5, advocates gathered for the opening general session, Our Impact on Capitol Hill, to hear from congressional Alzheimer's supporters and to learn how to continue to create policy change.
Alzheimer's disease has profoundly impacted Sen. Shelley Moore Capito (R-W.Va.), a lead sponsor of the Health Outcomes, Planning, and Education (HOPE) for Alzheimer's Act, which would increase access to information on care and support for newly diagnosed individuals and their families, and ensure that an Alzheimer's or dementia diagnosis is documented in the individual's medical record. Capito's mother, former first lady of West Virginia Shelly Riley Moore, died with Alzheimer's in 2014, and her father, former West Virginia Gov. Arch Moore, died with the disease in 2015.
Her personal experience informed remarks that focused on the importance of assisting caregivers. "I don't have to go far to tell you why I'm interested in this cause," Capito said. "This is still very fresh... We have to do more to not only to find a cure but to help families dealing with Alzheimer's."
Calling their dedication and hard work "irreplaceable," Capito encouraged advocates to continue telling their personal stories to lawmakers.
"Some of you may not be sure that you're making an impact, but you are," she said. "There's no member of Congress that doesn't want to hear from a constituent and to hear their story.
"Keep the energy, keep the advocacy — it works," Capito concluded. "I've seen how heart-wrenching Alzheimer's is. I want to help. I want to not have to make this speech in another seven or eight years because we've found the cure."
Dr. Maria Carrillo, Alzheimer's Association chief science officer, said that recent historic increases in federal Alzheimer's research funding — achieved as a result of the tireless efforts of Alzheimer's advocates — have created a buzz in the global scientific community.
"Researchers feel not only the energy and the hope, they're surging into Alzheimer's," she said. "They're encouraging new investigators to the field. This wasn't happening years ago, but we're back in action thanks to all of you."
Federal research funding is now near $1 billion annually, which is only half of the $2 billion the National Plan to Address Alzheimer's Disease specifies is necessary to prevent or effectively treat Alzheimer's by 2025. "We're continuing to press forward," Carrillo said. "Now's not the time to stop, it's the time to keep going. We're going to get to $2 billion. Research is on the horizon, but we also have hope on the horizon."
Carrillo said prevention is now a focus of new research — again, thanks to the Association and its advocates. "(The Association) has been funding prevention research before the federal government, and now the National Institute on Aging is talking about funding specific prevention projects," Carrillo said. "That's because of everything you've done. Without all of your work, we wouldn't have come this far in such a short time."
Stewart Putnam, Alzheimer's Association national board chair, introduced Sen. Roger Wicker (R-Miss.), a longtime champion of the cause in part because of his mother's battle with Alzheimer's more than a decade ago.
"I've seen the human cost of this disease with my mom," Wicker said. "This is the most profound opportunity I've had this week — to send you to Capitol Hill with a message of advocacy and the hope to get something done."
Wicker introduced legislation in 2015 that he hopes will help find a cure for Alzheimer's. The Ensuring Useful Research Expenditures is Key for Alzheimer's (EUREKA) Act aims to create prize-based incentives to encourage public-private collaboration in the fight against Alzheimer's and other dementias. The Alzheimer's Association supports the bill.
Wicker encouraged advocates to urge elected officials to co-sponsor the EUREKA Act during their Hill Day visits on April 6.
"Alzheimer's is a disease that will break our federal budget unless we get ahold of it," he said. "You're in Washington at the right time, and your heart is in the right place. Let's see if we can get that ‘eureka' moment for Alzheimer's."
Closing the session was Lou Bordisso, an alumnus of the Alzheimer's Association National Early-Stage Advisory Group. Bordisso, who has Alzheimer's and Lewy body dementia, related how a friend asked him if Alzheimer's had "brought him to his knees."
"I told him, ‘No, Alzheimer's has brought me to my feet,'" Bordisso said. "I use my feet to walk the halls of Congress. Advocacy gives me a voice. Advocacy gives me a seat at the table so I won't be on the menu."
Bordisso noted that advocacy can take place anywhere at any time. Former Speaker of the House Rep. Nancy Pelosi (D-Calif.) happened to be a passenger on the same flight home from last year's Advocacy Forum, so Bordisso seized the moment to discuss the Alzheimer's issue with her.
"To my surprise, she stopped and talked to me for 15 or 20 minutes, and I shared my story," Bordisso said. "We spoke heart to heart, and tears came to her eyes."
Bordisso sent advocates on their way by expressing his gratitude for their hard work: "Allow me to thank you from the bottom of my heart for all you've done, what you're doing and what you'll continue to do as Alzheimer's advocates."
During Tuesday's lunch program, political analyst and commentator Charlie Cook discussed the current legislative and political environment. Cook remarked that it was "amazing" that so many advocates come to Washington "on their own dime" for a cause that's so important to them.
"I've been around Capitol Hill since around 1972, and it really does make an impression on members of Congress for people to come in from their home state to put a face on this issue," Cook said. "You're not wasting your time, and you're not wasting your money... There just isn't a family in America that isn't directly affected by this horrible disease. What you're doing here is going to get us closer to a cure."
At the end of the program, Alzheimer's Association Ambassador Diana Dijak shared why she became an advocate. Her husband, Dennis, a physically active and healthy math and physics teacher, was diagnosed with younger-onset Alzheimer's in his early 50s; after Dennis was placed in a care facility in 2011, Diana went from being a full-time caregiver to fighting for a future without the disease.
Dennis died in 2013 at age 65, but Diana remains all in.
"We were robbed of at least 20 more years of time together," Dijak said. "Until we have an answer, until Congress gives (the National Institutes of Health) the money needed to fund the research, until families and care partners have the skills and training and support to care for their loved ones — until then, I will continue to be an advocate."