The Alzheimer’s Association, an IS member, is the leading voluntary health organization in Alzheimer’s care, support, research, and advocacy. Recently, exciting news was announced about progress in Alzheimer’s and dementia research that is creating promising new treatments for people living in the early stage of the disease.
We asked Joanne Pike, DrPH, president and CEO of the Alzheimer’s Association, about the latest research, their work to end Alzheimer’s and other dementia, and what they have in store to raise awareness during June — Alzheimer’s & Brain Awareness Month.
Independent Sector: The Alzheimer’s Association takes a three-pronged approach to fighting the disease: care and support, research, and advocacy. Give us an overview of your organization’s work to end Alzheimer’s and other dementia in each of these areas.
Dr. Pike: The Alzheimer’s Association is rooted in the care and support we offer those affected by Alzheimer’s and other dementias. In addition to our robust website, we have 75 local offices across the nation, providing comprehensive information throughout the progression of the disease and services such as face-to-face and virtual support groups and education programs. We are also working to ensure families have access to FDA-approved treatments.
As the largest nonprofit funder of Alzheimer’s research, the Association is committed to accelerating the global progress toward methods of treatments, preventions, and ultimately, a cure. The Alzheimer’s Association is currently investing more than $320 million in over 1,000 active best-of-field projects in 54 countries, spanning six continents.
The Association is also the leading voice for Alzheimer’s disease advocacy, ensuring that the need for Alzheimer’s care, education, and research is heard at every level of government. Working with the Alzheimer’s Impact Movement (AIM), a separately incorporated advocacy affiliate of the Association, we assemble and train a nationwide network of advocates whose voices are critical in engaging elected officials.
Specifically, we helped pass landmark legislation such as the National Alzheimer’s Project Act, which mandated the creation of a national plan to fight Alzheimer’s and significantly strengthened the federal government’s commitment to Alzheimer’s research. Through our committed advocacy network, AIM has helped secure a more than seven-fold increase in Alzheimer’s and dementia research funding since 2011.
IS: Exciting news was recently announced about another promising treatment for people living with the disease. Tell us the latest.
Dr. Pike: The most recent news of positive Phase 3 trial data for donanemab (Lily) is significant and underscores the scientific evidence and personal benefit treatments of this type can have for patients with access to them. These are the strongest results to date in clinical trials treating Alzheimer’s in the earliest stages. Donanemab gives people more time at or near their full abilities to participate in daily life, remain independent, and make future health care decisions.
This news is the latest following two FDA approvals of other treatments (Aduhelm and Leqembi) to address the underlying biology of the disease, not just the symptoms.
IS: What do people need to understand about these first few Alzheimer’s treatments?
Dr. Pike: We’re at a turning point against Alzheimer’s disease. For the first time, we have treatments that address the underlying biology of Alzheimer’s rather than just symptoms. However, the federal government agency that determines whether Medicare will cover the treatment — Centers for Medicare & Medicaid Services (CMS) — has blocked access so far. This has a massive ripple effect because other insurers follow the agency’s rulings.
Every day 2,000 people progress beyond the point where current treatments can help them. I can’t overstate the urgent need to get CMS to reverse its policy. People living with a progressive disease don’t have the luxury of time. We can’t let them down.
IS: What is the biggest misperception about Alzheimer’s disease that you’d like to correct right now?
Dr. Pike: It is really important for people to understand that Alzheimer’s and other dementias are not a normal part of aging nor are disease-related changes something older adults and their families should passively accept. Assuming Alzheimer’s and other dementia are inevitable as we age can be a huge barrier in delaying diagnosis and treatment. While it’s true we will all experience some level of cognitive decline as we age, when these changes interfere with daily living or stray drastically from a person’s normal behavior, it’s best to see your physician for a comprehensive evaluation.
IS: June is Alzheimer’s & Brain Awareness Month. Give us a sense of plans to “go purple” and raise awareness about the disease and encourage people to make a difference.
Dr. Pike: During Alzheimer’s & Brain Awareness Month in June, we are ramping up efforts to ensure FDA-approved treatments for early-stage Alzheimer’s are accessible to all who can benefit. The Association is conducting rallies in all 50 states this month, urging the CMS to change its policy preventing those with early-stage Alzheimer’s from accessing treatments.
In addition to participating in these rallies, the Alzheimer’s Association is inviting all Americans to sign this online petition to cover FDA-approved Alzheimer’s treatments now. To date, the petition has generated more than 24,000 signatures.
Additionally, during June, the Alzheimer’s Association is also inviting people across the world to participate in The Longest Day on June 21. Held annually on the summer solstice, The Longest Day invites participants to fight the darkness of Alzheimer’s through a fundraising activity of their choice.
Throughout the month and culminating on June 21, Longest Day participants will bake, bike, hike, golf, knit, play bridge, and participate in other favorite activities to raise funds and awareness for the care, support, and research efforts of the Alzheimer’s Association.
IS: How does being a member of the Independent Sector community help support your work to end Alzheimer’s?
Dr. Pike: One of our six values is community, and being a member of Independent Sector is an extension of that. It’s vital that the nonprofit community continue to share ideas, identify trends, and collaborate to keep abreast of the latest developments in order to best serve our missions.
IS: You have a number of resources for those who are living with or caring for people with Alzheimer’s — including a Helpline that is available around the clock, 365 days a year. Whether you have the disease, are a caregiver, or just want more information, what is the number and what type of help should people expect when they call?
Dr. Pike: Our free nationwide 24/7 Helpline (800-272-3900) is staffed by master’s-level clinicians and specialists, providing confidential support and information to all those affected, in over 200 languages. Day or night we are ready for your call.
Debra Rainey is Manager, Communications at Independent Sector.
————————————————————————————————-
Alzheimer’s Disease Statistics
- 6 million: The number of Americans living with Alzheimer’s.
- 1 in 3: The number of seniors who die with Alzheimer’s or another form of dementia.
- $345 billion: How much Alzheimer’s and other forms of dementia will cost our nation in 2023.
