BOSTON (CBS) – A powerful wave of hope moving through the ALS community – the FDA has approved a drug for the first time in more than two decades that slows the symptoms of the devastating disease.
Radicava has shown promising signs in Japan – slowing the progression of ALS by 33%. Trials were done on patients in the earliest stages, but anyone living with the disease can take it — including an optimistic Pete Frates. His mother Nancy told WBZ this new medicine totally changes the dynamic of the diagnosis:
“The doctor told us five years ago when Pete was diagnosed, ‘There’s no effective treatment, there’s no cure.’ She looked at me and said, ‘There’s nothing we can do.’”
The existing FDA-approved medicine, Rilutek, extends life by just weeks. Radicava could potentially mean more time – birthdays, graduations, weddings, more life.
“It’s hope! How about that you’ll be around for the next drug? When you put it in context like that – this is going to extend my life. When the next drug comes along I’ll be able to take that too,” Frates said.
It means more time between the painful milestones the disease presents to patients and the people who love them.
“We would grieve every morning. My husband and I would wake up and say, ‘What is it going to take away from us today? The day he couldn’t hold a pen anymore? When he couldn’t text? One of the more profound days was the day he came into this house and dropped the keys like a mic drop because he knew he couldn’t drive anymore. The day he went into a wheelchair, or couldn’t eat anymore. Breathe anymore. Once ALS patients hit these milestones, they know they’re never going back. The day they go in a wheelchair they know that’s it.”
One of the contributing factors to the drug’s swift approval without a separate U.S. trial was the international attention gained by the BC baseball star and his viral Ice Bucket Challenge.
“The world stood up and said this is no longer acceptable. That is why they approved this drug so fast. We’re very hopeful this is just the first drug in line of more to come,” Nancy Frates added.
Every 90 minutes — a new patient is diagnosed with ALS, and someone dies from the disease. But Nancy Frates says from now on, newly diagnosed patients won’t have to hear ‘There’s nothing we can do.’ Radicava is an option, and an option gives hope.