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Image courtesy of Phil Gutis

Biogen Dropped Me From Their Cancelled Alzheimer’s Study; Now They’re Bringing It Back

By | October 22nd, 2019

I wasn’t yet fully awake this morning when I started poking through my Facebook feed and saw the head-spinning news that Biogen had reversed itself and was now asking the FDA to approve its experimental Alzheimer’s drug.

Nine months ago, Biogen destroyed the high hopes of the Alzheimer’s community by saying that its drug, aducanumab, had failed a “futility review.” The thousands of people participating in the Phase 3 trials, it added, showed no appreciable cognitive improvements.

This morning it completely reversed itself, saying that trial participants “experienced significant benefits on measures of cognition and function such as memory, orientation and language.”

I was one of those trial participants. I learned of my diagnosis of early onset Alzheimer’s through the Biogen trial. For about three years after that devastating news, I received a monthly infusion of what I hoped was a dose of the experimental drug (I could have been receiving a placebo).

In an essay for The New York Times, I described learning of the trial’s cancellation as being punched in the stomach. It wasn’t that I believed the trial was going to eliminate Alzheimer’s from my brain, I explained, but it did give me hope that I was part of the search for a cure.

Today, Biogen restored that hope but, as I explained to a reporter from Stat News, the company also left me deeply frustrated. Why did it act so abruptly in March only to reverse itself nine months later?

Why did it not, for example, wait until it had fuller results to cancel the trial? There certainly was enough anecdotal evidence from folks like Jeff and Kim Borghoff who believed that aducanumab was helping.

In an interview with Being Patient, Kim said that she truly believed the drug was helping Jeff, who has younger onset Alzheimer’s and participated in the Biogen trial for almost three years.

I believe it did slow Jeffrey’s progression down,” Kim said. “He is progressing very slowly, so my fear now is now that he’s off the medication, that the disease will progress quicker.”

Well-wishers had often asked me if the Biogen trial was helping me. My standard answer was that I really couldn’t say, because there was no way of knowing where I’d be in the disease progression without it. Or even if I was receiving the drug rather than the placebo.

But with the new announcement from Biogen, I learned that in addition to the improvements in memory and cognition, people who received aducanumab also “experienced benefits in activities of daily living including personal finances, performing household chores such as cleaning, shopping and doing laundry and independently traveling out of the home.”

Interestingly, I had been thinking about just those activities the day before the latest Biogen announcement. I had an amazingly full day: an editorial meeting with the editors at Being Patient, an exercise session at my local rowing studio, a quick trip to Costco, a doctor’s appointment, a tour of a memory center for an upcoming story, a trip to Best Buy to get a smartphone repaired and a visit to Trader Joe’s.

Before I set off a 45-minute drive home from Best Buy, I told my husband Tim that I had secured his fixed phone and was headed home. “I’m trashed,” I said in my text message.

It had indeed been an unusually busy day. And the visit to the memory care assisted living facility made it an exceptionally emotional one. But as I was driving home, I patted myself on the back for how well I was doing. I smoothly made it home through some challenging traffic and construction zones. Yes, I was tired but not in a disabling way.

Just that morning, I had told my primary care physician how well I felt I was doing. She was very happy that I’ve dropped about 25 pounds and said she could see it in my bloodwork. My hemoglobin A1c, a key indicator of type two diabetes, had dropped almost a point and now stood at 6.2.

That technically means I’m no longer a type two diabetic, but instead am classified as prediabetic. Another half point and I’ll be “normal.” Besides glucose, which was a bit high, all my other blood biomarkers fell into typical ranges, a huge contrast to previous reports that were littered with cautionary flags.

My blood pressure was still a bit high, but I thought it was perhaps because I had forgotten to take my pills that morning. And, as I explained to my doctor, I certainly wasn’t feeling cured. My amnesiac episodes continue unabated and I definitely don’t have the mental stamina that I once did. But all in all, I feel pretty good. I thought it was because of my weight loss and an insane exercise regime.

I’m delighted to hear that perhaps aducanumab contributed to my clarity. And I’m eager to hear from Biogen as it fulfills its promise to work expeditiously to get former trial participants back onto the drug.

In fact, a friend suggested I immediately hop in the car and head off to the University of Pennsylvania, where I participated in the trial, for a new infusion of aducanumab. I’ll wait a bit but it won’t be too long before I start to demand continued treatment from Biogen. And I’m certain I won’t be alone.

 

Phil Gutis is a contributor for Being Patient who is living with young onset Alzheimer’s. The following essay about Biogen’s stunning reversal to seek approval of aducanumab is the first of what will be a periodic journal on his experiences of living with Alzheimer’s.

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6 thoughts on “Biogen Dropped Me From Their Cancelled Alzheimer’s Study; Now They’re Bringing It Back

  1. I also had been taken off my trial med. Am hoping that we will get back on track. The feeling that, at least I am doing something, is important.

  2. I really, really , REALLY want to be added to this trial. I understand it was discontinued and has started up again. I’m wondering if new patients joining the trial could provide unique targeted data.
    I’m a former nurse. My mother had dementia and though I’m 22 years younger than she, I’m following closely behind her.

  3. I was diagnosed with early onset a year ago. Lost my drivers license which caused a loss of dignity. I would like to get into this early program or at least be considered for any other trials

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