April 24, 2013
Advocates at the 25th annual Alzheimer's Association Advocacy Forum paused during a day of visits with members of Congress to attend a Senate Special Committee on Aging hearing on the National Plan to Address Alzheimer's Disease.
The National Plan, released in May 2012, is the country's first comprehensive approach to the Alzheimer's epidemic and includes a goal to prevent and effectively treat Alzheimer's disease by 2025.The hearing, "Are We on Track for 2025?," examined the plan one year after its creation and the resources needed to accomplish its goals. It featured testimonies from expert witnesses, including Ashley Campbell, who spoke on behalf of her father, country music legend Glen Campbell. Glen was diagnosed with Alzheimer's disease in 2011.
Senate Aging Committee Ranking Member Senator Susan Collins (R-Maine) welcomed a room filled with advocates, sharing her personal experience with Alzheimer's and her concerns about the disease's estimated trajectory.
"As someone whose family has experienced the pain of Alzheimer's time and time again, I know there is no more helpless feeling then to watch the progression of this devastating disease," Collins said. "An estimated 5.2 million Americans have Alzheimer's, more than double the number in 1980. Based on the current trajectory, more than 16 million Americans over the age of 65 will have Alzheimer's disease by the year 2050."
Collins also outlined her vision for the National Alzheimer's Plan.
"If we fail to change the current trajectory of Alzheimer's disease, our country will face not only a mounting national health care crisis, but an economic one as well," she said. "The National Alzheimer's Plan, which will be updated annually, will help us to focus our efforts and accelerate our progress toward better treatments, a means of prevention and ultimately, even a cure."
Senator Bill Nelson (D-Fla.), chairman of the committee, shared his thoughts on the Alzheimer's epidemic and his appreciation for advocates' efforts on Capitol Hill.
"It is shocking that today 1 in 3 seniors will die with Alzheimer's," said Nelson. "And as the baby boomers age, this fact is going to confront us all the more. We are very grateful for your tireless efforts on behalf of this issue and for the Alzheimer's Association."
Ashley Campbell was the first to testify, re-accounting Glen's diagnosis and their decision to launch a Glen Campbell goodbye tour, giving her father a chance to connect with family, friends and fans through music.
"Dad thought it was important for people to know you can keep doing what you love — that life doesn't end right away when you get Alzheimer's," she said. "It was also so important for my dad to take action and help spread the word about the need to find a cure for Alzheimer's."
An emotional Ashley shared her fears for the future – fears that resonated with many advocates in attendance – while issuing a plea to the Committee.
"Alzheimer's is a disease that robs people of their lives while they are still living and it robs families of the people they love while they're still standing right in front of their eyes," she said. "It's hard to come to the realization that, someday, my dad might look at me and I am going to be absolutely nothing to him. We need to find a cure for this because we're not the only family affected. So much pain should not exist in the world."
Next, Dr. Donald Mould, acting assistant secretary for planning and evaluation in the Office of the Secretary of the Department of Health and Human Services, shared his testimony, outlining progress under the plan in research and care. Mould specifically mentioned the Alzheimer's Disease Research Summit 2012, a meeting that united Alzheimer's researchers and advocacy groups; and a new training provided to more than 10,000 doctors, nurses and direct care workers to help them better recognize the symptoms of Alzheimer's. He also spoke to the future of the plan and the anticipated updates, expected to be released in May of this year.
"We are finalizing the 2013 update to the national plan, which will add additional steps we will take to beat this disease," he said. "The President's FY2014 budget includes a $100 million initiative to fight this [disease] through expanded research, improved supports for caregivers and enhanced provider education and public awareness."
Dr. Ronald Petersen, director of the Mayo Alzheimer's Disease Research Center and chair of the Advisory Council on Alzheimer's Research, Care and Services, was the next to testify. As a representative of the council, he shared recommendations from the group, citing a need for increased research funding, a compressed therapeutic pipeline and enhanced caregiver support, among other ideas. Peterson ended his remarks with a strong call to action.
"[The council] believes that it will be possible to treat and ultimately prevent Alzheimer's disease and the 2025 goal set forth in the Plan is ambitious but realistic," Petersen said. "However, the current pace of research and recommendations for improvement in care in Alzheimer's disease need to be accelerated."
Final witness testimony came from Dr. Michael Hurd of the RAND Corporation, who spoke about the results of a study he and his colleagues conducted with a grant from the National Institute on Aging. The study, focusing on the economic burden of Alzheimer's to our country, was published in the April 4 issue of the New England Journal of Medicine. In response to a question from the committee, Hurd compared the costs associated with Alzheimer's to those of heart disease and cancer.
"The defining aspect of the cost associated with Alzheimer's and dementia is that it is age related. Roughly speaking, the prevalence doubles every five years beginning among people in their 70s, and as the baby boom generation reaches those advanced old ages, then we see a very large increase in prevalence and therefore cost," he said. "I would not think that those same trends would compare to cancer and heart [disease], where the age prevalence is not nearly so strong or so striking."
Testimony from these expert witnesses evoked further discussion and questions from the senators on the committee. Witnesses fielded inquiries on a wide variety of topics, including needed levels of funding, costs to families and access to insurance.
To close the hearing, which was somber and sometimes emotional, Senator Collins made a comment on her wardrobe that resonated with the advocates in the room.
"I've worn this purple suit for many years on the annual day the Alzheimer's advocates come to town," she said, referencing her own attire. "I fear I am going to have to keep it around for many, many more years, and I'd like for us to get a cure so I can retire it once and for all."
Benjamin Smith, an Alzheimer's advocate from Maine, took a break from a successful day of Hill visits to attend the hearing.
"The information on research particularly resonated with me. For a lot of people, it's important to talk about the latest research and where that's going, especially the specifics," he said. "It's wonderful to see our country's senators on the same page that we are."
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2016 Alzheimer’s Association Advocacy Forum
April 4-6, 2016
Washington Marriott Wardman Park