PITTSBURGH — About 280,000 people in Pennsylvania are living with a heart-wrenching disease called Alzheimer’s. That’s according to the Alzheimer’s Association of Greater Pennsylvania.
FDA advisors recently approved a new drug that could provide new hope for families with loved ones living with the disease.
>> FDA panel endorses approval of Alzheimer’s drug shown to slow progression of disease
“We drove to Ohio to a cabin,” said Lisa Raymond. “It’s like a little treehouse. It was just me and my sister and my dog. We spent the weekend in a cabin where you had to go in an outhouse.”
Lisa Raymond keeps making them with her older sister.
“Even in her state of dementia, the smile showed she had a great time,” said Raymond. “And that brought back memories of when we were young and making tents.”
Raymond’s sister was diagnosed in her late 40s.
“She drew a clock for me, but it wasn’t a clock,” said Raymond. “I didn’t see a clock, and it’s something that she knew was the beginning of a problem. My sister is now 56 years old, She’s mid to late stages at this point.”
They had already lived through the disease with both of their grandmothers.
“While my grandmothers have both passed and my sister is too far to get this early-stage medication,” said Raymond. “Diagnosis is the key.”
Here’s yet another example of why early detection is key. Eli Lilly developed a drug called Donanemab.
“This is potentially the third FDA-approved medication for the actual treatment of the underlying biology of Alzheimer’s disease so to be in this stage where we can be talking about treatment for the first time ever is just incredibly exciting,” said Greater Pennsylvania Alzheimer’s Association Executive Director Clay Jacobs.
During clinical trials, monthly IV infusions of the drug slowed the progression of the disease for patients in the early stages of Alzheimer’s. The main safety issue with donanemab was brain swelling and bleeding.
“Are the benefits greater than the cost, and the cost being life,” said Raymond. “Life lost or something other.”
On Monday, FDA advisors recommended its approval. The FDA is expected to make its final decision later this year.
“What it really is is it’s effective early-early on and it helps reduce the cumulative progression of the disease so that folks can have more time with less symptoms, especially in those early phases,” said Jacobs.
And more time is what all these families including Raymond’s want.
“There’s not a week that goes by that I don’t draw that clock because I need to know am I going to be next because I’m waiting for time,” said Raymond.
Drawing a clock is an early screening tool for dementia. Numbers are on the outside of the circle or jumbled could be strong indications of mental decline.
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