Western New Yorkers among first in nation receiving recently approved ALS drug

AMHERST, N.Y. (WIVB) —  Time ticks by for Ben Cambria as the bag filled with Radicava slowly drips through the IV pumping into his veins, filling his 20-year-old body with the newest ALS treatment.

“It’s been a long journey but I’ve been strong,” said Ben Cambria, 20, who has been living with ALS, better known as Lou Gherig’s disease, for just over a year.

The rising college junior began showing symptoms like being off balance and struggling to complete day-to-day physical functions last year. He went to the doctor who ruled out a number of different diagnoses – it’s very uncommon for someone as young as him to have the disease.

“I was devastated [hearing the diagnosis],” said Rebecca Cambria, Ben’s mom, holding back tears. “You try to stay as positive as you can and take each day as it comes.”

“There are rough patches but I get through them,” said Ben.

This drug, Radicava, is giving the 20-year-old and his family and friends hope that the rough patches will ease up a bit.

“This is not the cure but it looks like it can clearly slow it [ALS] down,” said Dr. Tomas Holmlund, Dent Neurologic Institute’s Neuromuscular Medical Director. “How much– well we don’t know yet but we will soon.”

The disease weakens muscles and progresses quickly. According to Dr. Holmlund, 50% of patients live to see three years post diagnosis; only 10% live to see five years. The goal — to increase the number of people seeing five years and beyond. 

“People on it do much better than  people who aren’t on the drug,” said the doctor. 

Ben along with Maureen Pye from Eden are the first two people in the United States receiving the treatment which was recently approved by the FDA.

“It gives me hope that this will slow it down and my lifespan will be extended,” said Pye who was diagnosed in January 2017. 

The drug has been tested in Japan; initial results showing a 33% decrease in progressiveness. 

“He [Ben] has dreams like every other 20-year-old and I want him to see those dreams come true,” said Rebecca.

 The treatment is both costly, around $140,000 a year.

“I have high hopes this drug will help him be Ben Cambria and do what he wants to do,” said Ben’s mom. 

It’s also timely — patients spend an hour receiving it for 14 consecutive days followed by 10 days off, and repeat, forever. 

That’s time that Ben is willing to take to increase the liklihood that he’ll be able to go on and achieve his dreams — doing what most 20-year-olds want to do: graduating from college, traveling, and just having more time making memories with family and friends.

“Life is challenging,” starts Ben. “You just have to get through the challenges.”

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