Story by: Nick Picht; Reviewed by Gregory E. Cooper, M.D., Ph.D. on April 8, 2024
For Pam and Rick Jeffries, it’s become like clockwork.
Every other Friday morning, at the same time of day, they drive to the Norton Infusion Center on the Norton Brownsboro Hospital campus. After some time in the waiting area, Pam is admitted back into a room, where she receives her biweekly infusion of lecanemab, the first drug approved by the Food and Drug Administration (FDA) for the treatment of Alzheimer’s disease.
For six months, this has been the Jeffries’ reality.
“It has become a routine,” Rick said. “It’s just part of life now. It’s not an extra burden. It’s just something we do every other Friday. Sometimes on our ride out, Pam will ask me, ‘Why are we going out here again?’ And I’ll have to remind her, ‘We’re going here for your memory.’ Sometimes she’ll say that she doesn’t want to go, but it doesn’t take too much convincing. She’s put her trust in me.”
On Aug. 25, 2023, Pam made history as the first patient in Kentucky to receive the lecanemab treatment. It was an exciting, yet nerve-wracking time for Rick, who often remembers what his wife once was, yet is reminded daily of what Alzheimer’s disease took from them.
Pam’s recollection of the day-to-day is slipping. She sometimes forgets where she puts her jewelry. Her hearing aids occasionally find themselves wadded up in a napkin.
His hope is that her biweekly appointments halt the progression of a disease he still cannot bring himself to outwardly name in front of her. He sees the flashes of success and hopes he’ll see more of them as they continue treatment.
“I try to take it as it comes,” Rick said. “My fear is that she’s going to progress beyond that stage where the medicine is even a possibility. But I try my best to live in the moment, and I know that’s hard to do, but I work really hard at it.”
Nobody really knows you, like you do. It’s why doctors tell their patients to listen to their bodies.
And though Ralph and Bobbie West have been married nearly 52 years, that saying became apparent a few years ago, when Bobbie noticed she was acting different.
“Her sister had Lewy body dementia, and she would tell me, ‘I’m starting to act more and more like her,’” Ralph said.
At that point, Ralph began to pay attention. He started to notice it too.
From there, Bobbie spent months visiting doctors, taking written and oral exams. The goal — funny enough — was to prove to both herself and her physicians that her memory was not what it once used to be. For a while, they told her she was fine. She didn’t believe them.
“She would say, ‘I know I’ve got it; I know I’ve got it,’” Ralph said.
Eventually she was referred to Rachel N. Hart, D.O., a memory disorders specialist at Norton Neuroscience Institute. Dr. Hart confirmed — through a series of tests — Bobbie’s suspicion.
She has Alzheimer’s.
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“I was relieved that I thought maybe I could deal with it if I knew for sure I had it and maybe get some help somehow,” Bobbie said.
Dr. Hart introduced them to lecanemab and got Bobbie started in the program. By the fall, Bobbie had begun her infusions, the sixth patient in Kentucky to have the treatments. Bobbie’s experience with lecanemab has felt dramatic. Her first two infusions brought little change, which was to be expected. But after her third dose, for whatever reason, Bobbie felt oddly normal.
“The first two times, it was fine,” Bobbie said. “I didn’t have any pain. I didn’t have any worries. Nothing happened. And then a couple days after the third one, I said, ‘Ralph, have you noticed anything different about me? I think I’m more aware of things.’ And we continued over that week … I just really felt like my old self by the end of the week. Ralph called our son and said, ‘You just wouldn’t believe Mom. She’s back.’”
The FDA granted lecanemab full, traditional approval in July, paving the way for Norton Healthcare to receive the drug and become the first health system in the region to administer it to patients.
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 Alzheimer’s disease. 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, we will see this as one of the most important steps towards the eventual cure of Alzheimer’s disease,” said Gregory E. Cooper, M.D., Ph.D., director of the Norton Neuroscience Institute Memory Center. “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 about 30%.
“It’s kind of like stroke,” Dr. Cooper said. “Twenty-five years ago, when we had the first clot-busting medication for stroke, the first time we could potentially reverse the signs of stroke, we still had people coming to the hospital 24 hours after their stroke. It took a long time to convince people time is brain. I think this is a little bit the same way. More and more, people are going to realize there’s a treatment that’s not just going to treat the symptoms, but slow this down. And yes, it matters if I’m evaluated now as opposed to a year from now.”
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. Fortunately, only about 3% of patients have symptoms related to ARIA. In most cases, this resolves without treatment.
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 treatment process.
Since Pam began her treatments in August, the lecanemab program has grown significantly, and Norton Neuroscience Institute has continued to be one of the top programs in the country for administering the drug.
As of March 1, 2024, 71 patients have had at least one infusion, and roughly two dozen more are in various stages of beginning the process.
Dr. Cooper and other Norton Neuroscience Institute neurologists have begun to see the first lecanemab patients — people like Pam and Bobbie — for their six-month follow-up exams. These meetings are the doctors’ first chances to reevaluate the patients, test their memory and determine if the disease has passed from mild to moderate, thus eliminating them from eligibility.
“It is a little bit of a fuzzy line; it’s an arbitrary line,” Dr. Cooper said.
To determine this, neurologists often will use the Mini-Mental State Examination, grading patients on a score from zero to 30. A score ranging from 20 to 30 is considered mild, while 10 to 20 is considered moderate. Scores ranging from zero to 10 indicate severe cognitive decline. To remain qualified for lecanemab, patients need to score 22 or above. That said, there are also real-life barometers of cognitive function.
“We can look at activities and daily living,” Dr. Cooper said. “Do the patients need more help monitoring things like daily finances, day-to-day activities, shopping, meals, picking out clothes? These are things caregivers can observe and report, and that gives us a better idea of where the patients are.”
So far, in six months of treatment, the results have come back positive.
“All the signals we’re getting back are really optimistic,” Cooper said. “People are telling us they think they’re doing well, that they’re not seeing much disease progression. Now, there are potential reasons for that. What I’d really love to find out is that the drug is working even better than we thought it would from the clinical trial. That’s the perfect scenario. It’s also possible that we’re so early on and someone has not really changed over three or six months. So it may be too short of a period to measure change. Also, with the excitement and the optimism that comes with this, [there is] the increased stimulation of being part of it. So people might be doing relatively well because they’re now engaged. So we’re seeing really positive findings early on.”
The Memory Center has established support groups for lecanemab patients and their caregivers — a once-per-month Zoom meeting that gives them a chance to share experiences with other people who are at similar stages of their battle with Alzheimer’s disease.
Ralph and Bobbie have been attending and have found the sessions eye-opening.
“You find out that everybody knows or has been through [the same thing], and they’re willing to share their experiences,” Ralph said. “We’ve really heard and shared some bad stories, but I think it helps to be able to communicate and get that stuff off your chest, and you know there are other people outside that are fighting the same battle.”
It was just a few days before vacation.
Rick and Pam were set to head to Florida to get out of the cold, Kentucky winter. But before they could leave, Pam had her six-month follow-up exam with Dr. Cooper.
Despite Rick’s fears, Pam scored one point higher on her cognitive exam than she did some months ago, an encouraging sign her disease has not progressed much.
Still, the evidence of her decline is there.
Dr. Cooper, as part of her exam, gave Pam three words to remember — ball, flag and tree. A little while later, before the end of the visit, Dr. Cooper asked her to repeat the words back to him.
Pam looked around the room and, with a big smile, confidently gave her answer.
“I am beautiful,” she said.
They all laughed.
It’s obvious. Though Alzheimer’s disease already has robbed Pam of some of her memory, it has not wiped out her sense of humor. Nor has it broken the bond between her and Rick. In fact, it may have strengthened it.
To see the evidence, all you have to do is look down.
As Pam and Rick walked out of the exam room, she grabbed his hand and squeezed. The small public display of affection is not something the two of them — in all their years of marriage — had ever done.
That is, until Pam started her infusions.
Now, holding hands is the norm. Maybe it’s because Pam’s knees aren’t what they used to be. Maybe it’s because she knows, deep down, she needs her support system more than ever. Whatever the reason, it’s been an unexpected, positive side effect of Alzheimer’s disease.
And so, they walked out of Dr. Cooper’s office — hand in hand — ready for what the next six months may bring.
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