During Alzheimer’s & Brain Awareness Month in June, the Alzheimer’s Association is ramping up its efforts in making FDA-approved treatments for early-stage Alzheimer’s accessible to all who can benefit. The Association is conducting rallies in all 50 states this month, urging the Centers for Medicare & Medicaid Services (CMS) to change its policy, preventing those with early-stage Alzheimer’s from accessing treatments.
The Alzheimer’s Association estimates that each day without access to FDA-approved treatments, more than 2,000 individuals with early-stage Alzheimer’s transition to a more advanced stage of the disease where they are no longer eligible for treatment.
“People living with early-stage Alzheimer’s cannot afford to wait, they deserve access to FDA-approved treatments now while they can still slow progression and allow us to live independently for a longer time,” said Brian Goughan, of Chicago, IL, who was diagnosed with mild cognitive impairment due to Alzheimer’s disease in 2020. “It’s unfair and discriminatory how CMS is treating people living with Alzheimer’s.”
Currently, there are two FDA-approved treatments for early-stage Alzheimer’s, including mild cognitive impairment due to Alzheimer’s disease. Both approved treatments — and a third treatment, seeking FDA-approval — have been shown to slow progression of Alzheimer’s disease during the earliest stages of the disease.
Access to these treatments, however, remains severely hampered by an unprecedented CMS decision not to cover payment for the drugs without patients enrolling in additional clinical trials. Currently, Medicare covers all FDA-approved drugs with the glaring exception of the two Alzheimer’s treatments.
“The Alzheimer’s Association has been leading the way in calling on CMS to reverse its unprecedented and unjust policy. Now, we are inviting Illinois residents to join us and add their voices to our call and we need to listen to people living with the disease. They deserve the right to access FDA-approved treatments now, while they still can, if they and their doctor decide it is right for them,” said Delia Jervier, Executive Director Alzheimer’s Association, Illinois Chapter “There’s a groundswell of support for CMS to reverse its decision — from bipartisan members of Congress to 26 attorneys general to physicians and scientists and patients and families. The CMS policy is wrong and people living with Alzheimer’s are counting on us to get this decision reversed.”
Since the initial CMS decision in April 2021, the Alzheimer’s Association has urged CMS to reverse course. A rally outside the White House in March attracted nearly 900 supporters. Just last month, the Alzheimer’s Association conducted similar rallies outside 10 regional CMS offices and the Health and Human Services office in Washington D.C., bringing together thousands of volunteers impacted by the decision.
The 50 state rallies during Alzheimer’s & Brain Awareness Month will build on the momentum of previous rallies and growing public sentiment to make the Alzheimer’s treatments accessible. The rallies will bring together people living with Alzheimer’s directly affected by the CMS decision, as well as their caregivers, families, Alzheimer’s volunteers and the public.
In addition, the Alzheimer’s Association invites Illinois residents to sign this online petition urging coverage of FDA-approved Alzheimer’s treatments now. To date, the petition has generated more than 20,000 signatures.
More than 6 million Americans are living with Alzheimer’s disease — a leading cause of death in the United States. Additionally, more than 11 million family members and friends provide care to people living with Alzheimer’s and other dementias. In Illinois, there are more than 233,000 people living with Alzheimer’s and more than 312,000 family members and friends caring for them.
During Alzheimer’s & Brain Awareness Month, the Alzheimer’s Association is encouraging individuals who are experiencing cognitive issues to schedule an appointment with their doctor. An early diagnosis of Alzheimer’s provides a range of benefits for the individuals, including access to new treatments.
Other Chicago events during Alzheimer’s & Brain Awareness Month:
- Turn Chicago skyline Purple for Alzheimer’s and Brain Awareness Month The Alzheimer’s Association and BOMA are encouraging Central Business District building management to turn Chicago skyline Purple during the week of June 4-10th.
- Free stage play: Unforgettable. The dynamic and emotional play showcases the effects of caring for a loved one with Alzheimer’s at the DuSable Black History Museum and Education Center on June 10 at 11:00 A.M. and 3:00 P.M . You must register for free tickets at: https://unforgettableplay.com.
- Fight the Darkness of Alzheimer’s on the Day with the Most Light – The Longest Day. The Longest Day is the day with the most light — the summer solstice. On June 21, people from across the world will fight the darkness of Alzheimer’s through a fundraising activity of their choice. Whether you’re participating at home, online or in-person, we have plenty of fun ideas to engage family and friends in The Longest Day.
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. For more information and to register: visit alz.org/thelongestday.
