Batavia resident diagnosed with ALS, put on expensive drug to slow progression
This past summer, Batavia resident Mike Fiorella was diagnosed with Lou Gehrig’s Disease, a fast-progressing neurodegenerative disease with no cure.
His stepdaughter, Colleen Kemp said everyone knows him because he was a “help to the golf pros” at Terry Hills in Batavia until his recent retirement.
“Everybody knows him and knows how active he was and what a great sense of humor he has,” Kemp said. “He’s a big jokester, and has kept that in him.”
Amyotrophic lateral sclerosis (ALS) affects nerve cells in the brain and spinal cord, slowly taking away the ability to walk, speak, swallow and eventually breathe.
Kemp said Fiorella has progressed enough that he is losing his ability to walk and his speech has been effected.
The lifespan is usually one to three years after diagnosis.
“It’s a terrible disease,” Kemp said. “And there is no cure, so there is no hope. It’s not like cancer where you get chemo and possibly have a cure. There is no cure.”
Fiorella went to DENT Neurological Institute, in Buffalo, the only place at the time that had a new drug that came out, Radicava. Fiorella was one of the few approved to receive the drug. Radicava costs $149,000 a year, with insurance only covering part of the cost. He will need to be on the drug for the rest of his life, which will hopefully slow down the progression of the disease.
“They’re draining their savings account to get the drug,” Kemp said. “We’re asking all family and friends to help us raise these funds.”
Fiorella is currently using a walker, but Kemp said he will soon need an electric wheelchair, which will cost around $20,000.
“They already put a $5,000 ramp in the house,” Kemp said. “The next step is to get handicap bathrooms.”
Kemp said dealing with it mentally and knowing that he is going to pass away is bad enough, but adding the financial burden makes it so much worse.
“The cost with this disease is astronomical,” Kemp said. “The deterioration is so fast and you can’t just go to the hospital.”
Kemp started a Go Fund Me page located here to assist with the costs.
“There are so many different aspects and costs, and this is his life,” Kemp said. “It’s financially draining.”
