Roswell Gordon’s eyes lit up as he smiled at his wife, Marilynn, recounting how they met almost 65 years ago while studying at the University of California, Berkeley. The walls of their Vancouver home are adorned with relics of their life together. Over the past decades, the couple have gone on many adventures — backpacking around Europe for six months, spending time in Eastern Asia, driving across the United States — the two made it their mission to learn about the world through experiencing it.
Now, Roswell and Marilynn Gordon have spent the last few years on a new kind of adventure, one navigating a world with Alzheimer’s, and hoping to leave a lasting impact.
“I just have the best companion in the world on this journey,” Roswell Gordon said, while holding his wife’s hand.
In 2014, Roswell Gordon, now 86, was diagnosed with early-stage Alzheimer’s, with symptoms of mild memory loss. By 2016, he and his wife found a study through the Oregon Health & Sciences University School of Medicine, testing a new drug with the potential to help slow down the progression of the disease.
Almost seven years later, Roswell Gordon is still driving and fairly independent — for him, the drug seems to be working.
Lecanemab: A drug with promise
Dr. Aimee Pierce, an associate professor of neurology in the OHSU School of Medicine, began researching Alzheimer’s 11 years ago. Now, she is leading clinical trials at OHSU to test the antibody Leqembi, also known as lecanemab, as a treatment for Alzheimer’s disease. The drug was just approved for the accelerated approval pathway by the U.S. Food and Drug Administration in January.
“It’s a win. It’s not like a war, but a battle that we won,” Pierce said. “This result came to pass because of a lot of advancements in the field.”
The testing of lecanemab is currently in its third phase of trials. When Roswell Gordon joined the trials in 2016, he was part of a group of participants in a blind study, testing the effects of lecanemab in people showing symptoms of mild cognitive impairment. In 2020, that trial wrapped up; Roswell Gordon has been getting regular infusions of lecanemab ever since.
In a more recent trial, as part of an AHEAD study, Pierce has been working to test the effect of lecanemab in people with no cognitive Alzheimer’s symptoms but brain imaging that has showed signs of the amyloid beta plaque often associated with the disease.
“If we can detect it earlier and treat it earlier, we have a much better chance of a better outcome,” Pierce said.
The studies so far have shown evidence that they can work to clear amyloid plaque in the brain and slow the progression of memory problems, according to Pierce.
Though lecanemab has been granted accelerated FDA approval, it is not easily accessible to the public, and there are still many unknowns about what insurance will cover, according to Pierce — though she believes full approval is soon to follow.
How it works
The lecanemab drug is an antibody that binds to the amyloid beta plaque in the brain, according to Pierce. Amyloid is a protein that forms clumps of plaque in the brain that are often identified in people with Alzheimer’s. Lecanemab was granted accelerated FDA approval because the testing has shown a reduction of the amyloid beta plaque.
“It’s important to realize it doesn’t stop or reverse progression of Alzheimer’s disease, but (people using the drug) progress more slowly,” Pierce said. “This might be kind of a first treatment that can help, but we may need other treatments, as well.”
Patients in the lecanemab trials had to commit to monthly or biweekly infusions of the drug, for at least four years. Roswell and Marilynn Gordon have been going into OHSU for biweekly infusions since 2016, though they were recently switched to monthly infusions.
The infusion itself takes about an hour, though the whole process takes about a half day for the Gordons because patients must be monitored for 30 minutes to a few hours following the infusion. Roswell Gordon passes the time reading the newspaper or, his favorite, taking a nap.
“I just feel extremely privileged to be able to have that infusion regularly,” Roswell Gordon said.
Both he and Marilynn Gordon have noticed a difference — though Roswell Gordon does struggle with his short term memory, the progression of the disease seems to have been relatively slow, especially compared to friends they knew who also had Alzheimer’s and were not part of the drug trials, according to Marilynn Gordon.
Both Roswell and Marilynn Gordon believe that being part of the lecanemab trials at OHSU have been instrumental in helping slow the progression of the Alzheimer’s disease for Roswell Gordon.
“It’s my intention to donate my brain when I die,” Roswell Gordon said, adding that he also plans to donate his body to the OHSU school of medicine, as long as some of his ashes are given to Marilynn to sprinkle at his favorite spot on the Oceanside beach. “That’s a thank you to them for taking such good care of me.”
“But let’s hope that’s not anytime soon,” Marilynn Gordon added, giving her husbands hand a loving squeeze.