There has been a lot of controversy around the new Alzheimer’s drug aducanumab. As someone living with early stage Alzheimer’s, I have a lot of feelings around this.
Some background: I worked in technology since I graduated from college. I spent most of my years at Intel Corporation, managing and leading teams, and coaching and leading others to help them find their true purpose in life.
In 2012, I started struggling at work and had a hard time remembering conversations. I started down the long path of getting a diagnosis and in June 2016, after many doctor visits and imaging scans, I was diagnosed with early stage, early onset Alzheimer’s.
My family and I were devastated, but I picked myself up and started a new career, one where my sole mission is to help us find a cure for Alzheimer’s and to remove the stigma of this disease.
I’ve spent many hours at UCSF Memory and Aging Center and have been involved in two clinical trials. I hope to continue to be part of finding better treatments, and that takes me to the heart of the matter.
Earlier this year, I was able to speak at the U.S. Food and Drug Administration’s hearing regarding aducanumab, sold under the brand name Aduhelm. My hope was that it would be approved so that I could extend my number of good days. Two of my peers have been on the drug and both are seeing great progress.
Those of us with a terminal illness without a cure need hope. On the day the FDA approved Aduhelm, I woke up in tears (happy tears). I was so excited and so thankful. My family had been praying for something like this for a long time.
I’ve done absolutely everything I can to stay healthy, exercise, read, challenge my brain and eat well. That’s all great, but we need more than that and that’s why Aduhelm is so exciting.
It gives me hope. It gives my family hope. We have seven grandchildren and six adult children. All of them need more time with me, and I need more time with them. I would really like to be there when my oldest grandchild graduates from high school. Aduhelm gives me hope for more time with my husband and my daughters. I’m not ready to sit and wait, I want and need this drug now. Even if it only gives me a few more years, I’m willing to take it.
My neurologist said that I’m a great candidate for Aduhelm. I am aware of the side effects and know that my doctors will monitor me closely. We’re aware that there’s great debate about the drug’s effectiveness. Based on the FDA’s approval, there was substantial evidence that Aduhelm reduces amyloid plaques in the brain and that the reduction in these plaques might provide important benefits to patients. Amyloid is the protein that clumps into sticky brain plaques that are one of the hallmarks of Alzheimer’s disease.
The FDA last week recommended that the treatment only be used in patients in the Alzheimer’s disease stage studied in the clinical trials — people with mild cognitive impairment or mild dementia. It hasn’t been tested yet on people with more advanced cases. But this is the first treatment to be approved since 2003.
I hope to be first in line at UCSF when this drug is available. I hope that someday I can shout from the rooftops and let everyone know that it’s helping me and, most importantly, that it’s giving me more time with my family and friends.
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