Story by: Nick Picht; Reviewed by Gregory E. Cooper, M.D., Ph.D. on October 17, 2023
Pam Jeffries’ symptoms presented themselves in the form of a question.
“[Pam’s] two grandkids kept asking, ‘Pawpaw, why does Grandma keep repeating herself,’” her husband, Rick Jeffries, said. “The strange thing was, living in the moment, I never knew anything was wrong.”
That’s when Rick began paying closer attention. He noticed his wife was different. Lisa Scott, Pam’s daughter, was noticing it too.
“My daughter would go over and visit with her,” Lisa said. “And I would purposely ask my mom, ‘How was your visit?’ And she would say, ‘When did she come over?’ or, ‘Did she come over yesterday?’ It’s kind of like ‘Groundhog Day,’ you go over the same thing all the time.”
Her symptoms started to worsen. After a while, Rick knew it was time to see a neurologist.
In 2021, he took Pam to see Gregory E. Cooper, M.D., Ph. D., director of the Norton Neuroscience Institute Memory Center. After several tests, Dr. Cooper diagnosed Pam first with mild cognitive impairment, and then with mild Alzheimer’s disease.
For Pam, 73, a two-time cancer survivor and published writer, the diagnosis was scary. For Rick, it reminded him of a past experience he could never forget.
“To have this pop up is disappointing, but my hope is something else gets us both before we lose our memory [completely],” Rick said. “I remember my mom. She was 86 and she lived with my two sisters and I’d go over and visit her. She’d be in her hospital bed and I would walk through the front door and her eyes would get that big, but she couldn’t remember my name. She would just say, ‘Get over here big boy.’”
For Pam, though, a new treatment for mild Alzheimer’s disease offers hope with her diagnosis.
In January, the U.S. Food and Drug Administration (FDA) granted lecanemab accelerated approval for the treatment of Alzheimer’s disease, and Dr. Cooper discussed the possibilities with Rick, Pam and their family.
“She would tear up, and then she did say, ‘I don’t want to die,’” Lisa said. “And of course we get upset. You never want to hear that. And [Rick] said, ‘Well this is why this is important that we do this medication and try keep you here as long as we can. And that’s when she said, ‘I trust both of you to make the right decision for me.’”
Lecanemab — branded under the name Leqembi — is a medication designed to remove the protein beta amyloid from the brain. The buildup of beta amyloid is thought to be the driving cause of plaques that are characteristic in many Alzheimer’s patients. The thought is that removing the beta amyloid will slow down or stop the progression of Alzheimer’s.
“I think when the historians look back on this, I think we will see this is one of the most important steps towards the eventual cure of Alzheimer’s disease,” Dr. Cooper said. “It is the first treatment that addresses — what we believe is — the underlying cause [of Alzheimer’s] and bends the curve, slows the progression. At the same time, I’m aware that it’s only slowing it down.”
In order to qualify for the medication, people need to meet a specific set of criteria. To begin, the potential patient must undergo tests to determine the extent of their cognitive decline. Lecanemab is designed only for patients with mild cognitive impairment or mild Alzheimer’s. Anything beyond that threshold excludes them from treatment. Then, the patient needs an MRI and a genetic test to determine risk factors, and a spinal fluid exam to test for beta amyloid in the brain.
From there, the patient can begin the process of receiving the medication. Lecanemab is given via infusion every two weeks and is thought to slow progression of Alzheimer’s disease by up to 30%.
“I hope this is the first step, and the next drug [slows the disease by] 40% and 50%,” Dr. Cooper said. “But that’s meaningful. Over time, does that mean two or three more years living at home with your family? Does it mean more time to enjoy graduations and weddings and things like that? So I think it has a chance to really positively impact the lives of patients and their families.”
Despite the benefits the drug has shown in clinical trials, there is a risk for side effects. As many as 1 in every 5 people will have some degree of ARIA, or amyloid-related imaging abnormalities. This is presented most commonly as swelling or bleeding in the brain. While most of those symptoms will subside naturally, roughly 3% of patients will have significant symptoms.
If you think you or a loved one may be a candidate for lecanemab, visit NortonHealthcare.com/Lecanemab.
Still, lecanemab’s breakthrough is a game changer, placing a greater emphasis on early detection of Alzheimer’s disease. The earlier a physician can diagnosis the disease, the earlier the patient can begin the process.
“There is some emerging evidence that the earlier you start the treatment, the more effective it is,” Dr. Cooper said. “So then, early detection becomes critical, because the longer you wait, the less effective the treatment is, or you may even fall out of that window and not be eligible.”
Pam completed her required tests in the spring. In July, The FDA granted lecanemab full, traditional approval, paving the way for Norton Healthcare to receive the drug and become the first health system in the region to administer it to patients.
On Aug. 25, 2023, Pam would make history as the first patient in Kentucky to receive the lecanemab infusion.
“Supposedly, she’s the ideal patient, because she is [in the] early stage,” Rick said. “What frightened me was that she’d be negative about it and want to fight. But she’s put her trust in us. We were excited that she was [Dr. Cooper’s] first patient to start this medicine.”
“It’s a big commitment on the part of the patient and the family, and I really respect the people who are doing this,” Dr. Cooper said. “And it’s a huge commitment on the part of the system. It’s very easy for me to sit in my office and to tell people they’re eligible and write them a prescription for this medication. But you have to have a big team behind you doing all the work. And I’m fortunate to be somewhere where we feel like this is our mission and we’re going to do what it takes to do that.”
The infusions — paired with Dr. Cooper’s care — have given Pam’s family hope she will be the first of many to see the benefits of this groundbreaking medication. They’re hopeful she will be with them a little while longer, both physically and mentally, enjoying her grandkids and the milestones they reach in the future.
“We know eventually it’s going to get worse, so it’s going to get a lot harder,” Rick said. “So hopefully with this medication it’s a long time from now before we have to deal with that.”
“I’ve got nothing but high praise for Dr. Cooper. Most doctors, if they didn’t have a computer in front of them wouldn’t know anything about you. But Dr. Cooper calls me, and to have a doctor call you, that’s special. So he’s been there and he’s been encouraging, and I lean on him a lot to make me feel better.”
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