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‘I Don’t Want to Go Backward:’ The Human Side of the Aducanumab Battle

By | June 1st, 2021

“There was just a fogginess I remember having a couple of years ago that I don’t really feel I have now … Would my world become fuzzy again? I don’t want to go backward.” –Phil Gutis in The Washington Post

In this week’s Washington Post, Laurie McGinley’s article Alzheimer’s drug sparks emotional battle as FDA nears deadline on whether to approve, dives deep on the takes of advocates for and critics of Biogen’s experiemental Alzheimer’s drug aducanumab, turning to Being Patient’s own Phil Gutis, a participant in the drug’s clinical trial, and other experts for insights on the drug’s rollercoaster trials, and what lies ahead.

Gutis, who once worked as a reporter for the New York Times and as a communications director for nonprofit groups, began worrying about memory losses several years ago, when he got lost driving familiar routes and couldn’t remember a friend from his college newspaper.

In 2016, he responded to an advertisement for a clinical trial and was diagnosed with early-onset Alzheimer’s. When the Biogen trial was halted halfway through, he went several months without the drug, then enrolled in a longer-term study by the company.

If the FDA does not approve the drug, it is not clear what Biogen will do: Will it conduct another trial and reapply to the FDA, or drop the drug? Biogen declined to comment on its plans. If he is unable to get aducanumab, said Gutis, who is 59 and on disability, he would probably look for another trial.

Read the full article here.

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