The Alzheimer’s Association leads the way toward ending Alzheimer’s and other dementia by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. The Greater Pennsylvania Chapter of the Alzheimer’s Association serves 59 counties in Pennsylvania through its offices in Harrisburg and Pittsburgh, along with a network of dedicated staff and volunteers. We spoke with Greater Pennsylvania Chapter Vice President of Programs and Services Sara Murphy to find out about the latest breakthroughs in Alzheimer’s treatment and what this means for those living with the disease and those who may develop it in the future.
North Hills Monthly (NHM): Let’s start with the good news. Tell me about breakthroughs on the research front.
Sara Murphy (Murphy): The first exciting thing happened in 2021 with the introduction of the first FDA-approved drug, Aduhelm, that actually helps to slow disease progression for individuals in the earliest stages of Alzheimer’s disease due to dementia or mild cognitive impairment (MCI). As the first FDA-approved treatment in close to 20 years for Alzheimer’s and other dementia, this was a huge milestone for the Alzheimer’s community. A second drug, Leqembi, also received FDA approval, and just this May, we received a robust, positive, top-line data report by Eli Lilly on their Trailblazer-Alz Phase 3 clinical trial for Donanemab for the treatment of early, symptomatic Alzheimer’s disease. These anti-amyloid drugs can slow the progression for those in the earliest stages of the disease—Eli Lilly reported that half of the people who took Donanemab had no decline in function for one year; clinical decline slowed by 35 percent compared to the placebo on the primary outcome measure, and resulted in 40 percent less decline in the ability to perform activities of daily living.
NHM: Is there anything that can be done for people in the later stages of the disease?
Murphy: The FDA has approved medications in two categories: drugs that address the underlying biology of Alzheimer’s and change the course of the disease in a meaningful way for people in the early stages, and drugs that may temporarily mitigate symptoms of Alzheimer’s or dementia. The second group of drugs has been around for a while and can be prescribed to treat symptoms related to memory, thinking, judgment and other thought processes. They help support communication between nerve cells that are being damaged.
NHM: And now the bad news. Are these new drugs accessible to everyone with Alzheimer’s or dementia?
Murphy: No. Since April of 2022, the Centers for Medicare/Medicaid Services (CMS) has denied access to these new FDA-approved Alzheimer’s treatments, which will also apply to Donanemab if it is approved. CMS has repeatedly pledged to modify this ruling if they are shown new evidence of the medication’s efficacy, but to date, they have failed to do so. Top-line data shows that these medications can provide meaningful benefits and more time for people living with early Alzheimer’s disease.
The Alzheimer’s Association is appalled by this decision and has encouraged CMS to immediately review all of the data, just as the Veterans Administration did. The VA approved these drugs, which is huge, and we applaud their efforts. We’ve been relentless in pushing CMS to stop blocking treatments, and working through our advocacy arm, AIM (Alzheimer’s Impact Movement), we’ve been leveraging the voices of our constituents. Our actions include holding the first-ever rally outside the White House in March during our annual AIM forum, and CMS did not miss seeing all of us in our purple sashes. We’ve addressed seven different congressional hearings since them, filling the rooms with advocates. We’ve also been texting local congressmen and women to rally behind this fight as well. In July, CMS will be making their decision, so we’ll be pushing this agenda in the weeks and months to come.
NHM: Why is it so important to keep bringing awareness to Alzheimer’s disease? How big a problem is it?
Murphy: It is a public health crisis, and we need to address it as such. In Pennsylvania, more than 280,000 people are living with a diagnosis of Alzheimer’s, and that number is expected to rise to 320,000 by 2025. There are more than 404,000 people caring for those with Alzheimer’s disease, and that number will continue to rise as well. If we are able to slow down the progression of the disease, it can save costs, give people more time, and enable us to provide more extensive care.
Each day that CMS leaves this misguided policy in place, more than 2,000 individuals age 60 and older transition from the mild stage to the advanced stage, where they are no longer eligible for FDA-approved treatments. That’s 2,000 people a day! If these treatments are taken in the earliest stages of the disease, people have a better quality of life, they can remain independent longer, and they can attend more birthdays, holidays, and graduations. They also have more time to make healthcare decisions for the future.
NHM: Can people make lifestyle changes to reduce the chances of getting Alzheimer’s?
Murphy: Evidence shows that up to 40 percent of people can prevent or delay the disease by targeting modifiable risk factors. We still don’t understand 100 percent what causes the disease, and there are nonmodifiable risk factors such as race, ethnicity, age, family history, and genetics. But there have been fascinating studies on lifestyle intervention that include targeting environmental factors as well as cardiovascular health—what’s good for the heart is good for the brain. If you have healthy blood pressure, you have lower risk for heart disease and cognitive decline later in life. A healthy diet helps, and cognitive and social stimulation also factors in—you have to use it or lose it. Based on the research we’re seeing, lowering a combination of risk factors by eating healthy and staying socially and cognitively engaged can potentially lower the risk of Alzheimer’s disease. We need to begin talking about brain health as much as heart health.
NHM: How is the Alzheimer’s Association ensuring that these studies—and this new era of treatment—continue?
Murphy: Since 2013, the Alzheimer’s Association has increased research funding to the National Institutes of Health (NIH) sevenfold. We know that Alzheimer’s disease is the most expensive disease in America; it cost $300 billion in 2022, and that cost is projected to reach $1 trillion by 2025, with only two-thirds covered by Medicare/Medicaid. Our advocates have worked relentlessly to increase funding for research across the nation, with more than $3.7 billion given annually to the NIH.
NHM: How can people help?
Murphy: Anyone who wants to get involved can help; the more voices raised, the more movement we see in communities and on Capitol Hill. People who have been affected by the disease can share their stories as advocates; others can volunteer to put a team together for the Walk to End Alzheimer’s, which raises awareness of the disease in communities across the country. People can volunteer to be community educators or to facilitate support groups. We need people with all levels of skills and areas of interest to volunteer: 95 percent of our programs and services are done by our volunteers, and we couldn’t do it without them.
To learn more about the Alzheimer’s Association, visit https://www.alz.org/pa. The Walk to End Alzheimer’s will be held in Pittsburgh on Oct. 14, 2023, beginning at 9 a.m. at Highmark Stadium.
If you think that a loved one may be showing signs of Alzheimer’s disease, visit https://www.alz.org/alzheimers-dementia/10_signs to learn more.