ALS patients and families in the Seattle area are applauding the FDA for fast-tracking a drug that could slow the decline of physical function by 33 percent.
The drug is called Radicava and it is the first new treatment approved specifically for ALS in 22 years.
"All these long years with nothing. It's like being in the desert for 22 years," said Becky Moore, ALS Evergreen Chapter President. "This is wonderful news. We hope this is just the beginning of more drugs being approved by the FDA."
Moore says currently there is one drug on the market and it has only been able to prolong lives for about three months. ALS is a progressive disease that affects nerve cells in the brain and spinal cord. Eventually, people with ALS lose the ability to initiate and control their muscles, which often leads to paralysis and death within two to five years of a diagnosis.
Moore is connected to the Evergreen chapter because her brother-in-law has been living with ALS for more than 20 years. She knows he is a rare case.
This new drug offers a lot of hope for patients. Michael and Suzi Olebar met through salsa dancing a few years ago and married in 2012. Two years after that, Michael started having muscle twitches. He was diagnosed with ALS in March 2014.
"I asked him if he was going to fight this and he said, 'with everything'", said Suzi. "So, he does."
The two still volunteer and travel together but Michael is limited with movement and some speech. He continues to go to physical therapy and takes supplements. But Radicava is offering new hope.
"That's what we need in the ALS community," said Michael. "Hope keeps us going."
"And with that, and with Michael's determination and the support of our friends, we've done really well," said Suzi. "We're really lucky."
"And you're kicking me in the butt," Michael chimed in.
The new drug is set to release in August and the Olebars are hopeful it will reach them in time. The ALS community is still learning a lot about Radicava. It is an infusion drug that requires 14 days of continued treatment, 14 days off treatment, and then more rounds.
For unknown reasons, military veterans are twice as likely to develop ALS as the rest of the population. Olebar served as a Marine. Moore's brother worked around helicopter fuel. At this point, there is still no known cause. Moore says specialists in Seattle are well-aware of the anticipated release and are tracking news related to the drug. Virginia Mason and Swedish both have ALS treatment facilities on their campuses.