Every week, I conduct a Zoom meeting with my grandfather, Opa, to discuss the public’s perception of Alzheimer’s. The meetings were his idea: a long-retired, well-accomplished doctor who authored more than 100 research articles during his time in medicine, Opa is now fighting the clutches of Alzheimer’s and is determined to change the way it is commonly viewed and understood.
His perspective is unique: This is a physician who understands what’s happening to him, both medically and socially. Yet given that his difficulty regularly stringing complex sentences together dissuades him from dissuading others, he asked if I would help. So, for the past four months, we’ve been swapping articles and discussing them, with Opa providing me his input and me making sense of his arguments. It’s “Tuesdays with Morrie,” but with Alzheimer’s, Zoom and Opa.
It was announced this week that the FDA had approved Aducanumab, a drug from the company Biogen intended to help combat Alzheimer’s. It’s certainly a landmark approval — but also one that comes with hesitation.
“This makes me feel two things at once,” Opa says, looking indirectly at the Zoom screen. “Excitement, and the desire to stress a word of caution.”
His excitement is because this is the first time in nearly 20 years that the FDA has approved a drug that combats Alzheimer’s in this way. That’s longer than Opa has been (knowingly) fighting the disease. Aducanumab was approved after trials displayed a deceleration of the accumulation of amyloid, a protein in the brain that is indicative of Alzheimer’s. Opa calls the protein “boxes,” out of regularly forgetting the word amyloid and desiring an easy-to-remember replacement that a lay person like me can understand.
But this leads to his word of caution: The fact that the boxes are disappearing is excellent, but Opa also wants readers to understand that this does not necessarily mean that patients improve. The “squares” departing a person’s brain means Alzheimer’s is halted at that exact stage — not that it is reversed. A patient doesn’t get better; they just don’t get worse.
“It’s not a cure for Alzheimer’s, what they’ve approved,” he tells me. “Aducanumab is proving to be a way to halt Alzheimer’s once it’s spotted … which inherently means it’s already gotten a hold on somebody. The drug shows that it looks better in the brain, but we haven’t seen anything (yet) that shows that people are actually seeing a reversal of the disease — that they’re improving.”
Opa’s criticism mirrors that of many medical professionals, who have warned that the drug is a positive development for someone with early stages of Alzheimer’s, but unfortunately may be inapplicable for someone with developed or advanced Alzheimer’s. As suggested in The New York Times, it is intended for people with “mild” symptoms — not developed ones.
“That means,” Opa says, “it maybe will help people very early in their Alzheimer’s. But not the people who are already torn apart by it. People like me.”
So for those out there who are like Opa — or who are like me and love someone like Opa — we urge that you do not jump to a conclusion and assume Aducanumab (or Aduhelm, as its brand name will be called) will suddenly make a person connect thoughts and words again. Perhaps Biogen will prove this wrong and display improvements beyond the mere stripping of amyloid. All of us dearly hope so; but even if it is not the case, the FDA’s approval is still nonetheless a cause for excitement.
“I read a lot of Alzheimer’s studies,” Opa tells me, smiling sheepishly as he picks up his printed-out version of the article. “And for the first time, one shows progress. I need to make it clear that it’s not a cure — yet — and we must be cautious in how excited we get … but in an area of medicine where there’s never been much success, we suddenly have something to cheer for.”