‘We will do anything for any kind of hope’: Liberty Lake man participates in Alzheimer’s drug study
LIBERTY LAKE, Wash. — Nearly six million people are living with Alzheimer’s disease, and a new drug approved by the FDA may provide relief to people living with the life-altering illness.
The drug isn’t a cure, but it slows the progression, potentially giving people the chance to have a better quality of life, like Alan Tarbutton.
His wife, Janet, started noticing some memory changes.
“He would forget that we had the conversation to grab the keys and then that wasn’t happening,” Janet said.
In 2015, doctors told Alan at 58-years-old he had Alzheimer’s. At the University of Washington, tests were ran to confirm it.
Then, there was a glimmer of hope. Alan qualified for a study for a new drug, Aducanumab. “Maybe down the line for future generations this could be a huge, a huge stepping stone, so we wanted to be part of that,” Janet said.
It was given to Alan once a month through an infusion at UW. Janet said he was the first person in Washington to be put in the study. Researchers would periodically do cognitive testing for the study.
“When we started it, he was in mild cognitive impairment, MCI. And then a year after that he went into early — or younger onset Alzheimer’s,” Janet said.
She said she saw a difference in her husband.
“I think he was able to process better, like he was able to take two or three instructions,” Janet explained.
In 2019, the study stopped. The company, Biogen, said based on the progress, it was unlikely they were going to meet the final results they wanted.
“That was a bad day,” Alan said.
Janet said Alan’s cognitive skills declined in what she called a brain fog.
“He was unable to process things, what’s happening, he got very lethargic,” she said.
Though their spirits remained high.
“We do not want the disease to take us down,” Janet said.
A year later, the study was back on. Biogen noted people taking higher doses showed less cognitive decline, and Alan started taking the drug again. But they took a big blow just three weeks ago.
“Because Alan’s been diagnosed with melanoma, we are no longer able to participate in the study,” Janet said.
Processing this has been tough for both Janet and Alan.
With FDA approval, the drug is available to people with Alzheimer’s now, though the advisory committee questions its substantial effectiveness. However, the Tarbuttons can’t afford the $56,000 a year drug.
“How can you afford that for those years of medication and then know that you’re still probably going to have to pay for in-home care,” Janet said. “Alan’s progressing and that’s the way the disease goes, but we did everything we possibly could to stretch that inevitable out.”
Despite everything, Janet and Alan are holding their heads high.
“Just have to stick with it,” Alan said.
The couple, celebrating 43 years of marriage this year, will continue to do just that.
“Everybody has their trials and this is ours,” Janet said. “We aren’t going to dwell on it and we just live for the day.”
You can visit the Alzheimer’s Association for more information about a loved one with the disease or to find support for caregivers.
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