WATERFORD — John Pulver, of Waterford, was one of a dozen or more volunteer advocates from the Maine chapter of the Alzheimer’s Association who joined over 1,200 advocates from around the country in Washington, D.C., last week for the Alzheimer’s Association AIM Advocacy Forum.

The forum is the nation’s premier advocacy event, designed raise awareness and increase legislative support for policies that will improve the lives of 5.8 million Americans currently living with Alzheimer’s disease, including 28,000 Mainers living with Alzheimer’s and their 69,000 caregivers in Maine.

“When meeting with Senator King and Congressman Golden I shared my personal story as caregiver for my wife, Cindy, who was diagnosed with Alzheimer’s four years ago following a two-year-long process. I am one of the thousands in Maine and millions nationwide who are dealing with Alzheimer’s on a daily basis,” Pulver said.

“Congress can help us by passing legislation the benefit with care, support and research funding Alzheimer’s. That’s how we will ease the burden on caregivers and find a cure someday,” he said.

In particular, advocates urged their members of Congress to support a $350 million increase in federal funding for Alzheimer’s research at the National Institutes of Health (NIH), where – despite historic increases since the passage of the 2010 National Alzheimer’s Project Act – researchers report that current funding falls far short of what’s needed to ensure the disease no longer ranks as the sixth leading cause of death in the U.S.

Advocates called on Congress to appropriate $20 million in Fiscal Year 2020 to fund the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (P.L. 115-406), the amount necessary to effectively implement the legislation which was signed into law Dec. 31, 2018. The BOLD Infrastructure for Alzheimer’s Act will create the much-needed public health infrastructure to implement effective Alzheimer’s interventions, including increasing early detection and diagnosis, reducing risk and preventing avoidable hospitalizations.

Adam Lacher, public policy director for the Alzheimer’s Association, Maine Chapter, said, “The BOLD Infrastructure for Alzheimer’s Act will establish Alzheimer’s Centers of Excellence to expand and promote effective Alzheimer’s interventions by providing state and local public health departments with the funding and resources needed to promote cognitive health and disease awareness, while also supporting the needs of caregivers and individuals living with the disease across Maine and the country.”

The Center for Disease Control (CDC) is preparing implementation of the BOLD Infrastructure for Alzheimer’s Act. However, determinations on awards for the Centers of Excellence and grants to public health departments cannot happen until the centers receive the Fiscal Year 2020 funds appropriated by Congress.

In the meantime, Alzheimer’s remains the most expensive disease in America, with costs set to skyrocket in the years ahead. In 2019, the total payments for caring for Americans ages 65 and older with Alzheimer’s or other dementias will surpass a quarter of a trillion dollars ($290 billion), according to a press release by the Alzheimer’s Association.

Equally devastating is Alzheimer’s financial toll on individuals, and to the country. Collectively, Medicare and Medicaid are expected to cover $195 billion ($146 billion and $49 billion respectively), or 67%, of the total health care and long-term care payments for people with Alzheimer’s and other dementias. This represents an increase of $9 billion from last year. This also means Alzheimer’s costs taxpayers in more than $22 million every hour.

To learn about the Alzheimer’s Association AIM Advocacy Forum, visit alz.org/forum.

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. Its mission is to eliminate Alzheimer’s disease through the advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Its vision is a world without Alzheimer’s. For information, visit alz.org or call 800-272-3900.

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