CHARLESTON, WV (WOWK) — Thurman Maynard is a husband and father who was diagnosed with ALS in 2018. Since the diagnosis, he’s fought for access to treatment options for himself and others.
In July, there is a new development in that fight.
“It is frustrating for myself because I felt so good and back to life when I was receiving treatment,” Maynard said.
Shortly after being diagnosed with ALS, Maynard was accepted into a stem cell trial experiment that he says gave him back some of what he’d lost. But since the trial concluded he hasn’t had access to any further treatment.
“BrainStorm is the company. The drug is called Nurown,” he explained.
That drug and three others out there for patients with ALS are not approved by the FDA.
“Patients across the world are saying ‘hey this drug is working for me’ why can’t we try these drugs,” Maynard said.
Congress recently passed the Accelerating Access to Critical Therapies for ALS Act allowing more flexibility to get the drugs approved faster. But it still hasn’t happened. This week lawmakers leading the push sent a letter to the FDA looking for answers.
“Congress stepped forward to see why there still aren’t drugs in bodies,” Maynard said. “The FDA they are doing a good job but it isn’t fast enough for people with ALS.”
He says this fight isn’t just for his own life, it is bigger than that.
“It is 100% fatal. There is no treatment, no cure. We understand it is going to take a lot to find a cure. But if we can at least have a treatment a little bit of hope to us that goes a long way. It gives us time to fight,” Maynard said.
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