The scene: A gorgeous wood-paneled conference room in a century-old building on the campus of the University of Pennsylvania. Seated around the table: Dr. John Q. Trojanowski, director of the university’s Alzheimer’s Disease Core Center, a handful of younger researchers, a leading scientist with the Alzheimer’s Association and staff of the association’s Delaware Valley Chapter.
The reason: A reception to honor five Penn scientists who received 2019 research grants from the Alzheimer’s Association. Their projects included studying the biological networks and pathophysiology of Alzheimer’s Disease and Parkinson’s Disease and the etiology and progression of suspected non-Alzheimer’s pathophysiology.
The conversation: Almost totally incomprehensible. At least it was to me, who didn’t even know that “etiology” and “pathophysiology” were words. When I had an opportunity to introduce myself as a new board member of the Association’s Delaware Valley Chapter and a patient/research subject at Penn, I couldn’t even pronounce the name of aducanumab, the trial drug injected into my arm once a month at Penn for the last three years.
The hour spent at the event in Penn was in some ways a real-life mirror of my desk, which is covered with an overwhelming number of largely impossible-to-understand articles about Alzheimer’s disease.
When I was diagnosed with early onset Alzheimer’s three years ago, I was determined to learn all that I could. After all, I was only experiencing the mildest of symptoms and thought I could understand what was happening in the field. But I quickly learned that I can’t keep up. The medical terminology is often undecipherable. The advice can be contradictory. And heaven help the poor schmo (i.e., me) trying to keep up with the latest in research.
A few months ago, in hopes of better understanding the state of research, I interviewed Dr. Rebecca M. Edelmayer, the association’s director of scientific engagement, who was also the Alzheimer’s Association’s national representative at the Penn event.
Edelmayer’s basic take during our interview and at the Penn event was that every possible avenue must be explored in the fight to discover a treatment and cure for Alzheimer’s.
That’s why one project that received funding will explore ACSS2, a protein coding gene, and its connection with Alzheimer’s. Another will work to develop an assessment tool that could help diagnose Alzheimer’s earlier. Yet another will study the connections between Alzheimer’s and Parkinson’s, both neurodegenerative diseases.
I also asked Edelmayer about the controversy raised by a recent Washington Post report that researchers from the pharmaceutical giant Pfizer had discovered that the company’s blockbuster arthritis drug Enbrel appeared to reduce the risk of developing Alzheimer’s disease by 64 percent.
After three years of internal analysis, the Post reported, Pfizer decided not to pursue its findings, and most significantly, not to make the research public.
The story hit like a nuclear bomb in the Alzheimer’s community. Some were intensely angry, others literally in tears about the idea that Pfizer could have had a treatment for Alzheimer’s in its grasp and chose not to pursue it.
I too was angry when I saw the story. But as I read further into the piece, I saw that the truth was much more complex. The data was based on an analysis of insurance data and the company’s internal review found the drug unlikely to make a difference.
The company told the Post that it chose not to share its data with scientists because publishing it might have led outside scientists down a rabbit hole.
I believed Pfizer stumbled badly with that decision, because as Edelmayer noted, and the Penn reception proved, we must explore every avenue and turn every stone, no matter how preliminary the data.
In keeping with Edelmayer’s philosophy, Pfizer should have shared the data so researchers at Penn and hundreds of other research centers could have pursued the possibility that anti-inflammatory drugs such as Enbrel could delay and treat Alzheimer’s.
Anything else, as the Alzheimer’s association noted, ill serves the millions of people like me facing the disease now and the untold millions who will confront it in the future.
Phil Gutis is a former New York Times reporter and civil liberties and environmental advocate who was diagnosed with early-onset Alzheimer’s in 2016.
