An Alzheimer’s patient on what was lost when Biogen shut down its trial, and what may be gained again

Biogen’s decision to revisit a once-failed treatment for Alzheimer’s disease came as a shock to scientists, doctors, and investors alike. For Debby Rosenkrantz, the surprise came with a bit of hope.

Rosenkrantz, 66, was a volunteer in one of Biogen’s studies on the treatment aducanumab, the studies it terminated in March after concluding the drug had no hope of working. Now, with Biogen giving aducanumab another shot — and promising to get trial participants back on the therapy — Rosenkrantz is looking forward to reversing what she said was “a major loss.”

We spoke with Rosenktrantz and her wife, Susan Woskie, on this week’s episode of “The Readout LOUD.” The following transcript was edited for clarity.

Debby, how are you doing?

Rosenkrantz: Up and down. Pretty excited these days. I’m excited to be able to possibly start up the treatments again. And it’s so much better than just sitting and not knowing what to do and feeling like you’re treading water, working hard, but just treading water. I had felt when I was taking the medication that I was stable and it was so disappointing when they shut it down and that we had none of the understanding of why that decision had been made. In fact, a friend of mine was on a 6 a.m. airplane, called me, and told me that it had been shut down and that was how I found out. It just is such a relief to feel like at least there’s another effort to try to address Alzheimer’s.

Everyone was surprised, I think, by Biogen’s decision this week to resurrect aducanumab. When did you hear the news and what was your reaction when you heard it this week?

Rosenkrantz: I again got a text from a friend that they had read that it was back on. And I was pretty much in disbelief. I thought, “I don’t think so. I think you’re mistaken.” But I was thrilled to find out that, in fact, she wasn’t mistaken and that this was an option for me again. To be able to also be part of a community of other people getting the treatment is, for me, also helpful.

You mentioned before that you felt like the drug was having an effect during the trial. How did it benefit you? What kind of effects were you seeing?

Rosenkrantz: I felt like I was remembering better. I had testing done when I was diagnosed and then I had the testing done a year later, a full year later. And I didn’t decline at all in that full year. And, in fact, I could still tell you some of the tests that they gave me that year. … There are little pieces of it that are still in my memory bank. The testing was many hours long. It was exhausting. I could feel when I did the tests more recently that I just don’t have the same memories. 

Susan, did you notice a difference while Debby was participating in the clinical trial?

Woskie: You know, it’s hard from a caregiver standpoint because we’re, you know, kind of like we’re in the trees and the incremental changes one direction or the other are difficult to see. But I can say that I didn’t see any significant declines during that time. So I think that, to me, it was, you know, indicating that [the drug] was having a positive effect. And plus the positive effect of feeling like you’re doing something … to participate in something that you hope in the end, if it doesn’t affect you, will at least help others in the future.

Rosenkrantz: There’s very little you can do with a diagnosis but no drug.

What have you been doing to care for yourself to try to kind of keep that care going?

Rosenkrantz: I try to be a very regular meditator, because I think that helps. I exercise regularly, and I’ve been trying to look for ways of being involved in my community, volunteering where I’m both not going to feel like I’m underutilized, but also capable of doing it with Alzheimer’s.

Biogen said this week that it’s working to open a new study that would allow former participants like yourself to receive the drug again. There wouldn’t be a placebo arm. All the participants would receive the drug. Debby, is that something that you’re going to do?

Rosenkrantz: Yes, I would definitely do it. One thing I’m curious about — I don’t understand the science of it — but [the drug] made me very itchy. So I’m like, “Oh, no, start scratching again.” But it’s totally worth it being itchy to be able to address the decline.

What has it been like to cope with the kind of topsy-turvy nature of this clinical trial — from how much promise there was to the cancellation in March to obviously the news this week?

Rosenkrantz: It’s been a roller coaster. I don’t know if I’m repeating myself, but I felt really supported by the cohort of the people [in the study]. And so when I lost the study, I also lost that connection and that support system that I had through the study of having Alzheimer’s and trying to figure out what to do with it. The clinicians had been so wonderful that losing them felt like, you know, a major loss.

Susan, we’d ask you the same question: What’s it been like for you during this period?

Woskie: I think initially the frustration was how little information we were given from Biogen about the reasons for the cancellation. I think a lot of the investigators also felt that way — that we’d never actually heard directly from Biogen, even a thank you for participating. So that was kind of frustrating at that juncture. Since then, I feel like we’ve just gone on and are trying to move forward and do all the things that we can to enjoy the time in front of us right now.

Do you have any advice for people with Alzheimer’s who might be thinking about participating in a clinical trial? What should they know before making that decision based on your experience? 

Rosenkrantz: Interesting question. I mean, I would always encourage anybody to do a clinical trial because it’s better than doing nothing. I feel glad that I did the trial and I would do it again even if it hadn’t been helpful because it was better than just sitting with Alzheimer’s. And it also was good to be a part, small as it was, of a community of people that were getting treatment.

Woskie: I think one of the things that we found out in this process was that you don’t anticipate that they’re going to stop a trial that you enter. So, first of all, I agree with Debby that, you know, everyone who feels they’re able to should try to contribute to the knowledge because we are desperately looking for treatments for this disease.

But if you’re thinking about what you want to look at in terms of the agreement between a company and yourself about what will happen in the trial in terms of cancellation, I think having some way to address the impact of the cancellation on people. …  They could have perhaps done some groups so that people that were in the trial could get together and discuss what had happened and the impact on them. They did actually follow up four months after cancellation to do testing to see if there was any impact of cancellation on neuro-psych testing. We don’t really know the results of that, but that seemed like a good thing.

Debby, Susan, thank you both again for speaking with us. And we wish both of you well.

Woskie: Thank you for interviewing us, because it’s important to keep this question of treatment of Alzheimer’s on the forefront.