Each month, we’re featuring an advocate who engages with policymakers to ensure priorities that improve the lives of people impacted by Alzheimer’s and all other dementia remain top-of-mind in Congress. Updated April 7, 2023.
Twelve years ago, Ann Sechrist’s husband Nelson was diagnosed with Alzheimer’s. He lost his business because of the disease, and they declared bankruptcy and lost their house shortly after. They had to start over at ages 60 and 62, and Ann had to learn how to start over with someone living with Alzheimer’s disease.
“When Nelson got the diagnosis, we didn’t hesitate to see what we could do,” said Ann. “We learned about resources available through the Alzheimer’s Association, and my husband got into a lecanemab study, getting infusions twice a week for over six years. He benefited from it. We didn’t know that would be the case, we just wanted to get involved, help advance research, and do whatever we could do so others wouldn’t have to go through this. We knew we needed a treatment that could help make a difference.”
In January, Ann Sechrist shared her story with Rep. Lucy McBath’s (D-GA-07) district office. Ann’s experience caring for her husband, a participant in a lecanemab clinical trial at Emory University, is a particularly important perspective following the recent Food and Drug Administration (FDA) decision granting accelerated approval of Leqembi™ (lecanemab). Ann asked Rep. McBath to urge the Centers for Medicare & Medicaid Services (CMS) to change its decision that is blocking coverage of FDA-approved treatments targeting amyloid for Alzheimer’s.
As Ann shares, going through the clinical trial presented its own challenges. Ann was working full-time, and she took about a half day off each day she took him for the infusion. She kept working to maintain their health insurance and finances.
For about eight years, Nelson underwent extensive cognitive and physical testing. He had already had a spinal tap and scan to confirm Alzheimer’s, but he had to do it again for the clinical trial. During the trial, he got a PET scan about once a year and MRI scans every six months.
“Nelson is an engineer with an MBA, a very intelligent man,” said Ann. “That was a challenge in the beginning, as the cognitive assessments weren’t challenging enough.”
Every six months, each participant and their care partner went through all day testing, where not only participants, but caregivers like Ann answered questions about the participants and their progress. But for Ann and Nelson, being part of the trial was worth it.
“I saw a change within the first month or two of the trial. You could tell that he was not declining; he stayed steady,” said Ann. “For the first year and a half or so, he didn’t decline in his cognitive or physical health. They paused the trial for 6-9 months, and he declined during that time. When they re-started it, he again did not decline further, staying at the same level until about a year and a half ago. He’s progressed in the disease by now, but we wouldn’t have had all of this time and all of these years.”
When the FDA granted accelerated approval for Leqembi, Ann was thrilled. Although she had already seen that it worked, she was ecstatic that others could benefit. Ann saw firsthand that it had the potential to give those living with mild cognitive impairment (MCI) more time with their loved ones.
“But I’m not thrilled that Medicare isn’t covering Leqembi,” said Ann. “I just met with Rep. Lucy McBath’s office, and I told them that we have to get CMS to cover these Alzheimer’s treatments. If you’re going to cover cancer drugs, you have to cover Alzheimer’s drugs too.”
After sharing her story with Rep. Lucy McBath’s district office staff, Ann asked for Rep. McBath to sign onto the bipartisan letter led by Reps. Darin LaHood (R-IL-16) and Paul Tonko (D-NY-20) to Health and Human Services (HHS) Secretary Xavier Becerra and CMS Administrator Chiquita Brooks-LaSure, which emphasizes the importance of access to FDA-approved therapies for families like hers impacted by Alzheimer’s disease.
Take action and urge your member of Congress to help ensure people living with Alzheimer’s have access to FDA-approved treatments.