I knew that participating in a clinical trial for an Alzheimer’s drug was unlikely to help me. But it gave me hope.
So when the news broke this week that the drug company Biogen had canceled its once-promising trial because of “disappointing results,” I felt like I’d been punched in the stomach.
It had been a difficult week already. The night before Biogen canceled the trial, I realized that I was losing 12 years of memories of my cherished dog Abe, who died from kidney disease last year. There are images of him in my brain, but they are from photographs. I lay in bed, digging frantically in my memory for him, and came up empty.
This disease is bad. I feel as if I’m getting erased and medical science doesn’t have any answers.
My phone began to ring, followed by Facebook messages: “Did you see the news today?”
Biogen and its research partner Eisai canceled the trial after an independent review of data determined that the drug was unlikely to help Alzheimer’s patients when compared to a placebo. “This disappointing news confirms the complexity of treating Alzheimer’s disease and the need to further advance knowledge in neuroscience,” Michel Vounatsos, Biogen’s chief executive, said in a statement. “We are incredibly grateful to all the Alzheimer’s disease patients, their families and the investigators who participated in the trials and contributed greatly to this research.”
I too am deeply disappointed but overwhelmingly grateful to Biogen and all the other companies and scientists who are working feverishly to find a treatment — or cure — for Alzheimer’s.
I received my diagnosis of early-onset Alzheimer’s three years ago, when I had responded to an ad for the Biogen trial seeking people experiencing memory issues. Despite a surface assessment from the trial coordinators that I seemed fine, I scored low enough in that day’s memory testing to be told that something was indeed likely to be wrong. Subsequent M.R.I.s and PET scans confirmed that at age 54, I did indeed have early-onset Alzheimer’s.
I joined the clinical trial and in the three years since my diagnosis, I have received 35 monthly infusions. The first 20 months were considered the blind phase, when I could have received a placebo or the trial drug. The last 15 months, I’ve been in the open label phase, which means that I was definitely receiving the drug, which was known as aducanumab.
Aducanumab targets the protein known as beta amyloid, a hallmark of Alzheimer’s disease, from the brain. Scientists believe that amyloid buildup is one potential cause of Alzheimer’s, but so far, the drugs that have been designed to remove it have failed to slow the course of the disease. Earlier this year, Roche canceled trials of a similar drug, crenezumab, that was likewise designed to target beta amyloid buildup.
The handwriting was on the wall for aducanumab once Roche made its announcement. In fact, in 2018, Eli Lilly, AstraZeneca, Pfizer and Merck canceled research on dementia therapies.
Even though its days seemed numbered, I continued to participate in the aducanumab trial. In 2019 alone, I’ve trudged down to the Memory Center at the University of Pennsylvania seven times for infusions, an M.R.I., a PET scan and testing.
Why put myself through all that when I knew in my heart that the drug wasn’t going to stop my Alzheimer’s progression? I truly believed that I was a small piece in the search to find a cure.
Over the last three years, I learned how difficult it is becoming for researchers to find people to participate in drug trials. Last year, The Times reported that “finding patients on whom to test new Alzheimer’s treatments is becoming an insurmountable obstacle.”
I decided that I’d single-handedly take on the issue. I started what I called the #shoechallenge. For each infusion or test, I’d wear a different pair of silly shoes and post about it on Facebook. It was a way to get people’s attention and encourage them to participate in drug trials.
Over the last year or so, I’ve worn Hobbit slippers, elf shoes, fish flip-flops and many others. I enjoyed picking out the next pair of crazy shoes to wear for my infusions — on deck were SpongeBob and unicorn slippers. I was working up the nerve to wear a pair of stilettos for one month’s visit, but alas, it won’t happen now.
I will miss the shoe challenge and my time in the trial. In addition to trying to help find a treatment, participating in the trial gave me something to do, an appointment on the calendar, a few hours out of the house.
Alzheimer’s steals more than your memories. It also takes away your ability to participate in much of life, to hold a job, to be comfortable in loud restaurants and movies and many other social situations.
I lost my job at a nearby small nonprofit late last year and my days are now pretty empty. I exercise at a nearby indoor rowing studio virtually every day — sometimes twice a day — and I go to the store and run local errands. I have doctor’s appointments. Otherwise, though, I’m pretty cut off. As one therapist noted, this is definitely not how I anticipated spending my late 50s.
My life was marked by hard work: first at The New York Times — starting as a copy boy out of school and climbing the clerical ranks until I became a reporter trainee and then a reporter. After that I became an advocate and landed a job at the American Civil Liberties Union, and then I became communications director at the Natural Resources Defense Council, with a staff of dozens spread out around the world.
For a while after my diagnosis, I was able to continue to work. But then I started losing details and struggling to complete assignments. Today, my working days are over. I’m looking for some volunteer opportunities, but I am now officially retired. Earlier this year, I qualified for Social Security disability and will begin receiving my monthly checks soon.
So what now with Alzheimer’s? I’ll look for another trial, but it’s likely to be at least a year before I can participate in another medication trial.
In the meantime, I’ll continue my Alzheimer’s advocacy. I’m headed to Washington in a few weeks to participate in the Alzheimer’s Association’s annual advocacy forum. And coincidentally, the day the Biogen news broke, I had scheduled a meeting with the constituent services director for Representative Brian Fitzpatrick, my member of Congress, where I told the story of the drug trial being canceled and thanked the congressman and his team for their support for additional funding for Alzheimer’s research.
My basic message today and for as long as I can communicate: We cannot give up. When the Hall of Fame baseball great Tom Seaver announced recently that he was leaving public life because of dementia, I saw a powerful message on an Alzheimer’s forum.
“Whenever a celebrity is diagnosed with dementia, it makes the news, which is sad. However, what if every person in the U.S. made the news when they were given a dementia diagnosis. That would be an additional 1,329 announcements every single day! And that is even sadder.”
Indeed it is.
