2018-07-06 / News

South Carolina advocates travel to Capitol Hill to request support for Alzheimer's research

Contributed by Alzheimer’s Association

Recently, advocates from all over South Carolina traveled to Washington, D.C., for the 30th Alzheimer’s Association Annual Advocacy Forum, including April Hamilton, of Lexington, S.C.

The advocates were joined by more than 1,200 others from across the U.S., including as far away as Alaska and Hawaii, to share their personal stories, to hear from leaders in the movement to end Alzheimer’s, to listen to the inspirational messages of well-known advocates like Marcia Gay Harden and Richard Lui, and to move the cause forward to fight this devastating disease.

The advocates went to Capitol Hill June 19, 2018 to ask their Congressional representatives for an increase in funding for Alzheimer’s research at the National Institutes of Health, Building Our Largest Dementia Infrastructure for Alzheimer’s Act (BOLD), and for support of the Palliative Care and Hospice Education Act (PCHETA). The BOLD legislation would establish a public health infrastructure to address Alzheimer’s, ensuring communities across the country are equipped to increase early detection and diagnosis of Alzheimer’s, reduce risk of cognitive decline, and prevent avoidable hospitalizations.

In South Carolina alone, an estimated 89,000 are living with Alzheimer’s while 309,000 caregivers provide millions of hours in unpaid care. Alzheimer’s disease is the most expensive disease in the U.S., now costing over a quarter of a trillion dollars to provide care for those afflicted ($277 billion). The majority of that cost is being shouldered by taxpayers.

Compared to the current costs of Alzheimer’s, research funding for Alzheimer’s is meager. For every $100 the National Institutes of Health spends on funding for Alzheimer’s research, $16,000 is spent by Medicare and Medicaid caring for those with the disease.

“Alzheimer’s disease exacts an enormous toll on caregiving families and individuals living with the disease, which is the sixth leading cause of death in the United States,” said Cindy Alewine, CEO for the Alzheimer’s Association South Carolina Chapter. “It’s those heart wrenching experiences that motivate our advocates to go to meet with their members of Congress in Washington, D.C.”

April Hamilton knows all too well the toll this disease can take on families. Her mother was diagnosed with younger-onset Alzheimer’s around age 60. The family was forced to sell their home in the face of mounting medical bills. April moved up the date of her wedding and had the ceremony at the chapel at her mother’s nursing home, all to make sure she could be there.

April now advocates on behalf of her young son as well, in an effort to ensure that future generations are not impacted. Her mother is in the late stages of Alzheimer’s in a skilled nursing facility. April, along with other advocates, shared personal stories and experiences with Alzheimer’s with elected officials to highlight the importance of finding a treatment for Alzheimer’s while supporting families facing this diagnosis.

“When you multiply each advocate’s story by over five million Americans living with Alzheimer’s, it becomes clear the human and fiscal impact is unsustainable. Investing in Alzheimer’s disease research is the only way we’ll reduce the burden on state and federal budgets through Medicare and Medicaid as

. well as the emotional and financial burden on millions of families,” said Alewine.

Advocates met with representatives from the offices of Senator Tim Scott, Congressman Ralph Norman, Congressman Mark Sanford, Congressman Trey Gowdy, and Congressman James Clyburn. Advocates also had the opportunity to meet briefly with Senator Lindsay Graham, Congressman Jeff Duncan, Congressman Joe Wilson, and Congressman Tom Rice.

To learn more about our public policy priorities or to get more involved in advocacy efforts, call 1- 800-272-3900, email alzsc @alz.org or visit alz.org/sc.

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