PITTSBURGH (KDKA) — Rene Fogarty made history last summer as the first person in the United States to get a new drug for ALS — or Lou Gehrig’s disease. It’s the first drug to get FDA approval in two decades.
We have video of Rene in August… and today.
A daily infusion at home every morning for ten days straight, followed by two weeks off. Then the cycle repeats… indefinitely.
He has an intravenous port in his chest to make it easier to give him the medicine.
“I have to use this huge patch, and it can’t get wet. And that’s a pain in the neck,” says Rene.
The drug is called Radicava. It neutralizes free radicals, which are molecules that damage cells, proteins and DNA. Radicava is not a cure, but rather a speed bump — designed to slow down the progression of the disease. It is given with another ALS drug — the only other FDA approved drug — Rilutek, which neutralizes a particular nerve signal that can be toxic at high levels.
Rene is still working as a sales coordinator, but he has noticed more weakness in his left hand, and he needs a walker now.
“So far so good. I mean, apparently, the drug is doing the effects it’s supposed to do. But also [I’m feeling] the side effects of affecting the balance,” Rene says.
Unsteadiness can be a side effect of Radicava.
He wears braces on his legs because of weakness in his feet. He notices occasional slurred speech.
One good sign — his breathing is still where it has been at prior visits.
And insurance has been covering the treatment.
“It was a little tough at the beginning,” says Rene, “but they approved it.”
His neurologist expects more people with ALS will take this drug.
“In addition to Rene, we now have five other additional patients on the medication,” says Allegheny General Hospital neurologist Dr. Sandeep Rana. “I think it will become standard of care, the combination of Riluzole and Radicava.”
Rene knows it is not a cure, but hopes it buys him some time.
“Who knows? Maybe another drug will come out,” he says.