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What science, informed hope, and the FDA, gave my mother

What science, informed hope, and the FDA, gave my mother

A few weeks ago, a news story about a new drug caught my attention. The drug was described as the first potential treatment for Alzheimer’s disease in some 20 years. To be clear, I don’t have a medical background, no direct experience with people suffering from Alzheimer’s, and typically wouldn’t really notice such a story. 

But in this case, I couldn’t help but think about what that type of treatment could mean. 

Last year, I lost my mother to lung cancer, so I have plenty of experience with fear, the feeling of helplessness at times, but the determination to fight – which meant at certain points turning to treatments that her doctors made sure we knew may well not work for her – but there was a chance. 

After reading more – I learned that the Alzheimer’s drug recently approved wasn’t a cure but kept popping up in the news because the yet-to-be proven drug was fast tracked by the U.S. Food and Drug Administration (FDA).  My medical experience (or lack thereof) gives me no measure to evaluate a drug and I’m happy to leave that to the experts, but my personal experience was stirred.

“Science gave us a place to find strength from and the hope at the chance to slow down the inevitable.”     – Lauren Grunley

I can’t imagine having been diagnosed with a disease or terminal illness – desperately wanting to fight yet having no weapon to fight with. For my family there was so much hope and trust in science and in the researchers, physicians, and nurses that were part of my mother’s treatment. We did our research, they did theirs, and we held out hope – informed hope – that a new therapy may come along that may work.

Science gave us a place to find strength from and the hope at the chance to slow down the inevitable. The stories of those battling Alzheimer’s seemed hardly different than what we went through with my mother and her battle with cancer. Her treatments were tough at times and ultimately there were many, and we knew they too were unlikely to be a cure. 

But it turned out that each different treatment, with all sorts of ranges of uncertainty, helped my mom survive for several more years than her doctors first thought. 

My mom got three ‘bonus years’ through targeted therapies which maintained a good quality of life – so how could they, or how they were approved, possibly be called into question. Those years meant the world to my Mom and should those therapies not have been approved through preliminary evidence she would not have had that time.

She was able to travel to Greece and Italy with Dad, share her love with her grandchildren – memories they won’t forget her being a part of, like my nephew’s brown belt in Tae Kwon Do, trip to Disney World, and incredible memories being together to plan and attend a major life event.  These weren’t easy times, she was often sick, and we were all afraid, but her treatments helped delay what we were told was inevitable. She made really good use of the time, experiencing the everyday joys she so cherished. She was able to say goodbye on her own terms and hoped that she was able to help others through her own experience and participation in clinical trials.

I have no idea how many people the Alzheimer’s drug on the news may or may not help and I know that few things in life are certain. But I do know that my mother was fortunate to have other options through the many mechanisms the FDA has to speed therapies with a reasonable chance at benefit for life-threatening illness. I’m grateful that she had the opportunity to receive those treatments and remain thankful to all the people and medical experts that helped her and made those treatments available.    

Lauren Grunley, is the daughter of Ken Grunley and her late mother, Ginny Grunley, who passed in February 2020 from cancer.