WASHINGTON, D.C. – Two Essex County teens were recently among the more than 1,000 Alzheimer’s Association advocates from around the country to visit Washington, D.C. for the Alzheimer's Association AIM Advocacy Forum—the nation's premier advocacy event.
According to the Alzheimer’s Association Greater New Jersey Chapter (AAGNJ), the event is intended to 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 180,000 individuals and their 448,000 caregivers in New Jersey.
Livingston High School freshman Revant Maridi was one of the local advocates to convene on Capitol Hill for meetings with New Jersey’s bipartisan members of Congress to discuss the real-life impact of legislative policies focused on providing researchers, healthcare professionals, caregivers and individuals with the educational tools and resources necessary to meaningfully combat Alzheimer’s disease.
Maridi became passionate about advocating for these issues after his grandmother died from a dementia-related disorder and his grandfather began showing similar signs. When the opportunity arose for him to attend the event in Washington, Maridi’s mother, Chitra, felt that this practical learning experience about how government works would prove to be just as beneficial as any day-to-day school experience.
“I’m so excited to see youth stepping forward to be part of our policy advocacy in this country, and particularly right here in New Jersey,” said Cheryl Ricci-Francione, executive director of AAGNJ. “Their voices are being heard in Congress. It’s so important for youth to understand how our government works, and in this case, it was inspiring to have these teens see how government works when it works well…
“They’re focused on a bi-partisan issue, which means there are no sides, and they get to see what it looks like inside Capitol Hill, how people talk to each other, how bills are discussed and become law, and how to talk to somebody about the things that are happening in your community.”
Francione also noted that when parents communicate the importance of working on this issue, “it often becomes a family affair,” as is the case with James Caldwell freshman Enzo Whetton and his parents, Dave and Rita. Francione said the Caldwell family has become “a cumulative voice,” which she said is “even more powerful.”
“When meeting with New Jersey’s congressional delegation, I emphasized that I am but one of thousands in New Jersey and millions across the country who are fighting Alzheimer’s on the frontlines, every day,” Enzo’s father said. “Our members of Congress have the opportunity to support their constituents and fellow Americans in this fight by funding research to uncover Alzheimer’s treatment breakthroughs and, one day, a cure; as well as by enhancing care and support services for people living with disease and their loved ones, like me.”
In addition to praising young advocates like Maridi, Enzo and Aaron DeNicola—an inspirational Bergen County teen who recently received the 2019 Alzheimer's Association Young Person Advocate of the Year Award—Ricci-Francione also said that “one kid isn’t going to make the change.”
“It’s going to be many kids who make the change,” she said. “It’s going to take an entire generation to address this problem, and that’s why it’s so important that youth are stepping forward—because the younger generation is going to be left with the problem if we don’t work on it now. I want them to feel empowered so they continue to work on solutions with us.”
During the forum on Capitol Hill, advocates urged their members of Congress to support $350 million in federal funding for Alzheimer’s research at the National Institutes of Health (NIH). Despite historic increases since the passage of the 2010 National Alzheimer’s Project Act, researchers reported that current funding falls far short of what is needed to ensure the disease no longer ranks as the sixth-leading cause of death in the U.S.
Advocates also called on Congress to appropriate $20 million in FY20, or the amount necessary to effectively fund and implement the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act, which was signed into law on Dec. 31, 2018.
According to Ricci-Francione, the BOLD Infrastructure for Alzheimer’s Act will create the much-needed public health infrastructure to implement effective Alzheimer’s interventions. This includes increasing early detection and diagnosis, reducing risk and preventing avoidable hospitalizations.
“[This 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 New Jersey and the country,” said Ricci-Francione.
The CDC is preparing to implement 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 FY20 funds appropriated by congress, Francione added.
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 aged 65 and older with Alzheimer’s or other dementias will surpass a quarter of a trillion dollars ($290 billion).
Equally devastating is the financial toll that Alzheimer’s has on individuals and the country. According to AAGNJ, Alzheimer’s is the most expensive disease in the country, costing an estimated $290 billion in 2019 alone.
Collectively, Medicare and Medicaid are expected to cover $195 billion ($146 billion and $49 billion respectively), or 67 percent, 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.
“Unless Congress moves quickly to support researchers in finding—and communities in providing—better treatments, these costs will continue to grow along with the number Americans affected, and Alzheimer’s will increasingly overwhelm our health care system,” said Dave Whetton. “Now more than ever, we must advocate to ensure Alzheimer’s remains a public-health priority for our elected officials, both in Washington and across the country.”
To learn more about the Alzheimer’s Association AIM Advocacy Forum, please visit alz.org/forum.