Lehigh Valley

Local ALS patient puts hope in new FDA-approved drug

VIDEO: ALS patient puts hope in new drug

ALLENTOWN, Pa. - Nearly three years after the Ice Bucket Challenge there's new hope for ALS patients.

For the first time in over 20 years the FDA approved a drug aimed at battling the disease.

"I would run four days a week 4 to 5 miles," Allentown's Paul Holler said.

Exercise for Holler included hiking Acadia National Park.

Now, as 69 News watched him in a motorized staircase chair, it's clear he's climbing a much more difficult mountain.

The 56-year-old father of four was diagnosed with ALS last September.

"I thought certainly they have come far in 80 years. But they haven't come very far at all," he said about treatments.

That's changed. Holler is hoping to take Radicava. It's the first FDA approved ALS drug in over 20 years. 

"It slows the rate of progression in way that enables people to have a longer life," said LVHN Neurologist Dr. Glenn Mackin.

Mackin says Radicava isn't a cure but an infused antioxidant that basically takes rust off cells, allowing those like Holler to avoid a feeding tube, or total paralysis a little bit longer.

ALS took center stage three years ago with the Ice Bucket Challenge. But it did something else than just raise more than $100 million for the little known disease.

"It brought it to the forefront. Now we see so much awareness, people are talking about it," said Kathleen Malloy.

ALS advocate Kathleen Malloy lost both her father and brother to the disease. She's encouraged by the potential of Radicava, even though it's not a cure.

"I think it shows hope for the future. We are focusing on this disease," Malloy said.

The drug costs about $150,000 per year. It was approved after clinical trial in Japan, not here in the U.S. Holler feels that's a plus and has hopes it will speed up more new treatments here. He'll find out this week if his insurance covers it, with the hope of extending his life long enough to try another new treatment.

"I have some hope. Maybe fleeting hope there will be a difference in the next two or three years," Holler said.
 


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