Capitol Hill was awash in purple on April 6 as the Alzheimer's Association Advocacy Forum culminated with Hill Day, an opportunity for advocates to meet with elected officials and advance critical legislation in the fight against Alzheimer's disease and other dementias.
For Mary Kay Harrity of Connecticut, a first-time Forum attendee, Hill Day gave her a sense of purpose and unity. "There's a collective feeling of urgency here today," she said. "There's strength in knowing we're all pursuing the same goal."
The Connecticut delegation also included Scott Russell, a former member of the Alzheimer's Association National Early-Stage Advisory Group who's living with the disease, and his wife, Amy. "You don't have to be an activist to come to Hill Day," Amy said. "The materials we have from the Alzheimer's Association make it easy to demonstrate why it's important to pass this legislation. And you're going to the meetings with a team of other people who understand the cause and support you."
Nikki and Ken Dodson are working to raise awareness of legislation that will help future generations, including their three children. Ken was diagnosed with Alzheimer's disease seven years ago at the age of 30. "We've accepted what this is," Nikki said. "We're trying to turn a negative into a positive. We know it's too late for Ken, but it's not for our children. We don't want them to go through this."
"We don't want anyone else to, either," added Ken.
A delegation from Delaware had the opportunity to meet with Sen. Tom Carper (D-Del.) to thank him for co-sponsoring the Health Outcomes , Planning, and Education (HOPE) for Alzheimer's Act, which would provide Medicare coverage for comprehensive care planning services, and ensure that a dementia diagnosis and care planning are documented in the medical record.
"This visit is in part so Sen. Carper knows that we support him like he supports us," said Greg Tigani, board chair of the Alzheimer's Association Delaware Valley Chapter. "We don't take him for granted."
Henry Alisa, who has attended the Forum for many years, added, "This cause gets greater attention every year. There are thousands of people in Delaware alone who are affected. We have to keep pushing for increased funding."
While meeting with the senator, Henry Simpson of Wilmington, Delaware, shared the escalating costs of Alzheimer's — the most expensive disease in America. In 2016, costs to the nation for Alzheimer's and dementia will total $236 billion. He asked the senator to support an additional $400 million in Alzheimer's research at the National Institutes of Health (NIH) to continue to fund the steps needed to meet the first goal of the National Plan to Address Alzheimer's Disease: to prevent and effectively treat Alzheimer's by 2025.
For Carper, a strong supporter of increased funding for Alzheimer's research, the fight against the disease is personal, as he has a family connection to the cause.
"I appreciate you being here," he said. "As many of you know, I care about this as much as you do."
During a meeting with Sen. Bill Cassidy (R-La.), advocates from Louisiana not only asked for his support of the HOPE Act and increased funding, but also made their case for the Palliative Care and Hospice Education and Training Act (PCHETA). This new legislation would establish palliative care and hospice workforce training programs for doctors, nurses and other health professionals, and create a national education and awareness campaign to share the benefits of palliative care.
Janet Robichaux, who lost her husband, Kirk, to the disease, emphasized to the senator how much palliative care could have helped her family. "We knew about hospice care and took advantage of that," Robichaux said. "But no one was that educated about palliative care, and we could've had the benefits of that in addition to hospice."
Grace Williams also told the senator her story. Her father was diagnosed with Alzheimer's when she was just 12, and she worked two jobs in high school to help pay his medical bills. Now 25, Williams is pursuing her doctorate in molecular science and nanotechnology with a focus on neuroscience so she can advance methods of treatment and detection.
For Cassidy, a physician, the stories and statistics the advocates shared resonated with him personally and professionally, and he promised to look into the pending legislation.
"This is a priority in our office," he said.
Senate hearing examines progress toward goals of national plan
In the afternoon, advocates attended a United States Senate Special Committee on Aging hearing, "Finding a Cure: Assessing Progress Toward the Goal of Ending Alzheimer's by 2025." They were joined by award-winning actor and Alzheimer's Association Celebrity Champion David Hyde Pierce, who testified about his personal experience as a caregiver.
The hearing had strong attendance from members of the Senate, signifying the importance of Alzheimer's as an issue on Capitol Hill. In addition to Chairman Sen. Susan Collins (R-Maine) and Ranking Member Sen. Claire McCaskill (D-Mo.), Sens. Richard Blumenthal (D-Conn.), Bob Casey (D-Pa.), Joe Donnelly (D-Ind.), Dean Heller (R-Nev.) Tim Kaine (D-Va.), Thom Tillis (R-N.C.), Elizabeth Warren (D-Mass.) and Sheldon Whitehouse (D-R.I.) were present to hear from the panel and ask questions.
Collins opened by sharing statistics around Alzheimer's disease, including the rising prevalence and escalating costs.
"If current trends continue, Alzheimer's disease could impact as many as 16 million Americans by 2050," said Collins. "In addition to the human suffering, Alzheimer's is the nation's costliest disease. If we do nothing, the Alzheimer's Association forecasts that Alzheimer's disease will cost the nation $ 1.1 trillion in 2050 ... This is no time to take our foot off the accelerator."
McCaskill welcomed the advocates in attendance. "There's purple everywhere!" she said, eliciting a cheer from the Missouri delegation.
McCaskill echoed Collins' sentiment about the devastating personal consequences and financial burden of Alzheimer's: "We have no hope of balancing our budget and getting our long-term debt under control if we do not address this disease. The impact of this disease is so significant, it turns everyone it touches into an advocate."
Dr. Ron Peterson, chair of the Advisory Council on Research, Care and Services for the National Plan to Address Alzheimer's Disease and a member of the Alzheimer's Association National Board of Directors, provided an update on the research elements of the national plan. He cited the additional $350 million for Alzheimer's disease research funding from Congress and the passage of the Alzheimer's Accountability Act in 2014 as examples of great progress, while encouraging the committee to continue to rely on the expertise of researchers when determining future funding levels.
"We strongly encourage Congress to endorse these thoughtfully generated and recommended funding levels since these are done by experts at the NIH," Peterson said.
Peterson closed by thanking the committee for its support and imploring members to continue their efforts.
"While this is an exciting time to be involved with Alzheimer's disease research because of the increased funding, patients and families cannot wait," he said. "This disease is not slowing down; it's increasing because of the aging population. The need cannot be any greater than it is today."
David Hyde Pierce followed by sharing his experience with the disease. "Like 15 million Americans today, I have a connections to Alzheimer's disease and dementia. I lost my grandfather to Alzheimer's disease in 1992, and my dad died in 1998 with vascular dementia and probable Alzheimer's," said Pierce. "As a family member, I witnessed my grandfather's decline, and saw how the strain of caregiving drastically affected my grandmother's health. Along with my brother and sisters, I was a part-time caregiver for my father after our mom passed away, her own health no doubt compromised by the burden of coping with Dad's dementia."
Pierce, a former member of Advisory Council on Research, Care and Services for the National Plan to Address Alzheimer's Disease, and an honorary member of the Alzheimer's Association National Board of Directors, also celebrated the increased research funding, but called for the same for caregivers.
"The investment in research is vital to ultimately achieving an effective treatment for Alzheimer's, but the reality is that we need an equally strong investment in caring for those living with the disease today," he said. "We need to prioritize actions within the national plan that will have the greatest impact on improving the lives of those living with Alzheimer's and their families."
Pierce specifically mentioned the HOPE for Alzheimer's Act, a bill supported by many members of the committee.
"While there is no treatment for Alzheimer's, there are many things that can be done to improve a family's ability to cope with the disease. Creating a care plan can help prevent unnecessary hospitalizations by creating a ways to manage medications and by developing a strategy to prevent falls," he said. "By creating a benefit for care planning after a diagnosis, HOPE will provide a roadmap for the person living with Alzheimer's and their caregivers."