Richmond woman who lost husband to Alzheimer's reacts to FDA approval

Richmond woman who lost husband to Alzheimer's reacts to FDA approval
Posted at 11:52 AM, Jun 11, 2021
and last updated 2021-06-11 11:52:37-04

RICHMOND, Va. - A Richmond woman who lost her husband to Alzheimer's in the summer of 2020 said the new FDA-approved drug to treat Alzheimer's offered hope for more time with loved ones living with the disease.

But not everyone agreed with the decision to approve the drug. On Thursday, a third member of an FDA advisory panel resigned over the agency's decision to approve it, according to the Associated Press.

But Robin Gouckenour, of Richmond, believed the approval was a step in the right direction.

"In my case, I was losing my best friend and spouse that I'd known since I was 18 years old," said Gouckenour.

Gouckenour said she'd been married to her husband Rick for 47 years. But the fun-loving tech whiz, father, and grandfather got a fatal diagnosis in 2017. Followed by another.

"Late 2017, he was told he had cancer. and then, you know, four months later, we get the diagnosis of the dementia," Gouckenour said.

The Myelodysplastic syndrome, or blood cancer, Rick was diagnosed with was something he planned to fight with a chemo regimen and complete bone marrow transplant, according to Gouckenour.

But his rapidly progressing Alzheimer's made that next to impossible. In the Spring of 2020, Gouckenour said doctors recommended he stop treatment.

"His death certificate says that he died of Myelodysplastic syndrome. However, the reason was dementia," Gouckenour said. "Because we had to stop giving him the chemo, he could have stayed on the chemo for another 10 years."

More than 6 million Americans and 150,000 Virginians were living with their own diagnosis of Alzheimer’s disease, according to Marie Kolendo, Senior Executive Director for the Greater Richmond and central and western Alzheimer's Association.

Kolendo said there was no cure for the disease or even a way to slow it down. That was, until Monday when the FDA approved a drug called Aduhelm.

"This drug therapy truly does change the course of the trajectory of the disease by slowing down that cognitive decline. It's not a cure, but it is a treatment. And it's the first such treatment of the underlying disease," said Kolendo.

Kolendo said that was a breakthrough, as prior drug therapies have just treated the symptoms.

"We're hoping that with the release of this drug, it's just the beginning of additional therapies, and ultimately a cure for the disease," Kolendo said.

But the FDA's approval has come amid debate on whether there’s enough evidence the drug works.

Dr. Aaron Kesselheim of Harvard University became the third member of an FDA advisory panel to resign Thursday, over the FDA's decision to approve the drug, according to the Associated Press.

In November, the panel said there were flaws in company studies and unanimously voted against the approval, but the FDA does not have to abide by that consensus, according to the AP.

But for Gouckenour news of the FDA approval of the drug was bittersweet.

"First off, I'm very glad and happy that it's out there," said Gouckenour. "On the other level, I'm sad that it wasn't sooner."

It offered hope, she said, that people can be with their loved ones a little longer.

"That's what I would have wished for us, is that we just had had some more time," Gouckenour said.