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I was devastated when Biogen cancelled my Alzheimer’s drug trial. Now I’m just bitter. | Opinion

Why would Biogen have caused such emotional havoc by killing the trials in March only to completely reverse itself seven months later?

William Burke goes over a PET brain scan at Banner Alzheimers Institute in Phoenix. The drug company Biogen Inc. says it will seek federal approval for a medicine to treat early Alzheimer's disease, a landmark step toward finding a treatment that can alter the course of the most common form of dementia. The Oct. 22 announcement was a surprise because the company earlier this year stopped two studies of the drug, called aducanumab, after partial results suggested it was not working. (AP Photo/Matt York, File)
William Burke goes over a PET brain scan at Banner Alzheimers Institute in Phoenix. The drug company Biogen Inc. says it will seek federal approval for a medicine to treat early Alzheimer's disease, a landmark step toward finding a treatment that can alter the course of the most common form of dementia. The Oct. 22 announcement was a surprise because the company earlier this year stopped two studies of the drug, called aducanumab, after partial results suggested it was not working. (AP Photo/Matt York, File)Read moreMatt York / AP
    by Phil Gutis, For the Inquirer
    Published 

The drug company Biogen announced Oct. 22 that it was seeking to bring back from the dead an experimental Alzheimer’s drug that it appeared to have killed last March. The startling announcement sent the thousands of us who had offered ourselves up as Biogen lab rats on yet another emotional roller-coaster.

Was the devastating news of the trial’s cancellation just a bump in the road? Should those who participated in the trials — and the millions of folks like us — now dream of an effective treatment that might slow down our devastating disease and give us more years of happy, fulfilling and productive life?

In July 2016, I responded to an ad I saw on Facebook about a drug trial that was seeking people with memory issues. That turned out to be a Biogen trial, and it was where I learned at age 56 that I have younger-onset Alzheimer’s.

For nearly three years I held out my arm once a month, as part of the trial, to be hooked up to an IV. Each month, I watched for about an hour as a mystery substance (I didn’t know whether I got the trial drug or placebo) dripped into my arm. I happily put myself through multiple MRIs, a few PET scans, repeated blood work, and cognitive testing.

» READ MORE: Why this ER doctor isn't optimistic about a fast cure for Alzheimer's.

I didn’t necessarily expect that Biogen’s drug Aducanumab was going to stop Alzheimer’s from ravaging my brain — although results from earlier trials had been quite promising. But I was determined to do my part to help find a treatment or cure for Alzheimer’s, which devastates the lives of 5.5 million people in the United States and tens of millions more of care partners who watch helplessly as their loved ones wither away.

But, yes, there was of course a spark of hope for myself, too.

It was extinguished in March when Biogen abruptly announced that it was ending the trials after a “futility” analysis suggested the drug wasn’t working. I heard about the company’s decision on social media. The University of Pennsylvania, where I had been enrolled in a trial, scrambled to contact its patients, most of whom had already heard the news by the time staff reached them.

Last week was déjà vu all over again. I was scrolling through my Facebook feed when I saw the Biogen news.

My first reaction, of course, was excitement.

But then I began to grow suspicious and even somewhat angry.

Why would Biogen have caused such emotional havoc by killing the trials in March only to completely reverse itself seven months later? Why did the company not allow the trials to continue while it fully analyzed its data rather than pulling the plug at the first sign of disappointing data?

The Advanced Memory Research Institute of New Jersey, which had one of the largest contingent of participants in the Biogen trials, captured my emotions in its reaction to the Biogen news.

“We had too many subjects, families, and staff who were heartbroken over the study’s termination,” AMRI said in a statement. “We wish we could have spared that heartbreak, but we are hopeful that we may be able to offer them something positive in the year to come.”

I’ve read that bioethicists are hotly debating what companies like Biogen owe the participants of drug trials once their experiments have finished. What level of care or posttrial involvement are subjects owed?

I never heard directly from Biogen after it killed the Aducanumab trials. The Penn Memory Center forwarded a note in which Biogen’s Alzheimer’s team expressed its “profound gratitude” and said it “understands and shares our profound disappointment and sadness.”

I’m sure that if the FDA accepts Aducanumab and the drug ultimately does what Biogen is suggesting, the bitterness I am feeling this week will magically turn to joy.

On the other hand, if Biogen lets us down once again, I’m just not sure how I’ll emotionally recover. I can only hope the company knows that it is playing with the thousands of real people who were trial participants and the millions of others desperate for an effective treatment or cure.

Phil Gutis is a retired journalist who lives in New Hope.