Advocates, actress Harden take fight against Alzheimer’s to Capitol Hill – Optimum Senior Care – Chicago In Home Care – www.OptimumSeniorCare.com
On June 19, advocates donning purple sashes stormed Capitol Hill, urging legislators to make Alzheimer’s a national priority by delivering a clear message: “Alzheimer’s is the most expensive disease in America.” At a hearing held by the U.S. Senate Special Committee on Aging, advocates gathered as actress and Alzheimer’s Association Champion Marcia Gay Harden testified on behalf of the more than 5 million Americans living with the disease, including her mother.
Advocates, actress Marcia Gay Harden take fight against Alzheimer’s to Capitol Hill
On June 19, more than 1,200 advocates donning purple sashes stormed Capitol Hill, urging legislators to make Alzheimer’s a national priority. After two days of preparation during the 2018 Alzheimer’s Association AIM Advocacy Forum, the advocates were ready for Hill Day armed with a clear message for lawmakers: “Alzheimer’s is the most expensive disease in America.”
In 2018, Alzheimer’s and other dementias will cost the nation $277 billion, and one in every five Medicare dollars is spent caring for someone with Alzheimer’s. By 2050, these costs could rise as high as $1.1 trillion. Advocates came to Washington, D.C., from all 50 states, including a 20-person delegation from Michigan, to meet with elected officials. A mix of newcomers and veterans, the group was eager to use their personal stories to advance the fight against Alzheimer’s.
“Alzheimer’s is not a political issue, it’s a human issue,” said Lauren Kovach of Brighton, Michigan, who lost her grandmother to the disease last year. “For those who say, ‘This doesn’t matter to me, this doesn’t affect me,’ that’s where we come in and share our stories. And we tell our stories as many times as we have to until people form some sort of connection to us.”
Kovach arrived at the meeting with Sen. Debbie Stabenow (D-Mich.), a leading ally of the Alzheimer’s cause, with an established relationship with the lawmaker from previous meetings. After 15 years of caring for her grandmother, Kovach and her mother were disappointed to find that “Chupe,” as their family lovingly called her, needed professional care at the end of her life. However, the hospice staff wasn’t properly trained to care for a person living with Alzheimer’s. Kovach and her mother instead resumed providing care on their own.
Stabenow is a co-sponsor of both the BOLD Infrastructure for Alzheimer’s Act, which would create a nationwide Alzheimer’s public health infrastructure, and the Palliative Care and Hospice Education and Training Act (PCHETA), which is designed to ensure an adequate, well-trained palliative care workforce. With Stabenow firmly behind the cause, Bertha Bullen of Okemos, Michigan, who’s lost several family members to the disease, asked the senator to encourage her colleagues on both sides of the aisle to go purple. Also a supporter of a $425 million increase in Alzheimer’s research funding at the National Institutes of Health, Stabenow agreed to connect with her fellow legislators.
“We’re very focused on getting additional dollars,” Stabenow said. “We’ve just got to keep it going.”
The Michigan group also visited the office of Sen. Gary Peters (D-Mich.). Margaret O’Dell of Whitmore Lake, Michigan, whose father died from Alzheimer’s, emphasized the importance of early diagnosis and how it could save $31.8 billion by 2025. She encouraged Peters to co-sponsor the BOLD Infrastructure for Alzheimer’s Act; Peters was open to learning more and agreed to look into the bill.
Across the Hill, Toby Ward of Kalamazoo, Michigan, entered his meeting with the legislative director of Rep. Fred Upton (R-Mich.) prepared to share his story of losing his grandfather — the father figure in his life — to Alzheimer’s. Ward ended up engaging in an impromptu discussion with Upton about Alzheimer’s prior to meeting with the staff member. In the meeting, Ward learned that Upton plans to co-sponsor PCHETA.
“It’s exciting and it’s empowering,” Ward said. “There’s so much work that goes into advocating for this cause, so to be listened to and to support something that I’m passionate about is an amazing feeling.”
Panelists encourage BOLD action at Senate hearing
A packed room of Alzheimer’s advocates were eager to hear testimony in front of the Senate Special Committee on Aging during a June 19 afternoon hearing titled “Changing the Trajectory of Alzheimer’s: Reducing Risk, Detecting Early Symptoms, and Improving Data.”
In her opening remarks, Chairwoman Sen. Susan Collins (R-Maine) introduced public health as a tool to help address the Alzheimer’s crisis.
“While we may all be familiar with the role of public health in protecting against communicable diseases, advancements in public health are beginning to change the story for certain chronic diseases, too. For breast cancer, early detection and screening save lives. The earlier cancer is caught, the better the prognosis,” Collins said. “We are here today to explore how we can tap into public health to rewrite the future of Alzheimer’s disease, just as we have done for so many diseases in the past.”
The Alzheimer’s community is working to leverage public health through the BOLD Infrastructure for Alzheimer’s Act. Co-sponsored by Collins and Sen. Catherine Cortez Masto (D-Nev.), who is also a member of the committee, the BOLD Act had 124 cosponsors in the House and 35 in the Senate prior to Hill Day, a point Collins mentioned during the hearing.
“The BOLD Act has 35 sponsors,” she said, “but I know by the time the members of this audience are done with their Hill visits, we will be up to 50! Or better yet, 60!”
Ranking Member Sen. Bob Casey (D-Pa.) addressed the broad impact Alzheimer’s has on people across the country.
“We need to improve our ability to diagnose the disease early so we can slow its progression,” Casey said. “We need to also make sure individuals and families don’t just get a diagnosis, but also get the support they need to deal with the disease. And we need to make sure that no communities are left out of these efforts.”
After a brief recess, Collins and Casey were joined by Cortez Masto and Sens. Joe Donnelly (D-Ind.), Deb Fischer (R-Neb.), Kirsten Gillibrand (D-NY), Doug Jones (D-Ala.) and Elizabeth Warren (D-Mass.).
Academy and Tony Award-winning actress and Alzheimer’s Association Celebrity Champion Marcia Gay Harden testified about the struggles her family is facing as they lose her mother to Alzheimer’s.
“For my mother, there is only the present, with no connection to her past, without the rich tapestry of her life to tell her story,” Harden said. “No dimension, just dementia. I see her concentrate, I see her try to speak the right words, I see her try to connect the memory to words and through it all, I see her eyes smile, but it seems to me the smile is a little bit wounded these days. We don’t know what the future holds, and we are scared,”
Harden encouraged support of the BOLD Infrastructure for Alzheimer’s Act to help families like hers.
“It is imperative that we as a country invest in a nationwide Alzheimer’s public health response to achieve a higher quality of life for those living with the disease and their caregivers,” she said.
Panelists who joined Harden in sharing their experience and knowledge of the disease included Lisa McGuire, Ph.D., lead of the Alzheimer’s Disease and Healthy Aging Program at the Centers for Disease Control and Prevention; Teresa Osborne, secretary of the Pennsylvania Department of Aging; Gareth Howell, Ph.D., associate professor at The Jackson Laboratory; and Cheryll Woods-Flowers, a family caregiver and Alzheimer’s Impact Movement advocate.
Woods-Flowers’ father passed away in February after living with the disease for 16 years. Despite the pain and hardship that her family faced, Woods-Flowers feels grateful her father was diagnosed early, and hopes other families can have the same experience with the help of the BOLD Act.
“When people are diagnosed early in the disease, they have time to work with their family and physician to engage in care planning, talk through financial decisions and discuss support services,” she said. “My dad’s early diagnosis gave us that time to talk through decisions, start interventions like medications to mitigate symptoms and gave him a better quality of life because we knew what we were up against. There needs to be a greater nationwide public health effort and infrastructure in order to increase early detection and diagnosis.”
Collins closed the hearing with an exciting announcement: After the efforts of advocates throughout the day, the total number of sponsors for BOLD had grown to 40 in the Senate and 133 in the House.
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