FORT SMITH, Ark. (KNWA) — Mark Bedwell has already outlived his initial prognosis when he was first diagnosed with amyotrophic lateral sclerosis, commonly known as ALS. In fact, he said he saw improvement after undergoing injections associated with a clinical research trial, but since it hasn’t been approved by the FDA, he can’t take continue treatments.
Because of this, he’s making trips to Washington D.C. to lobby lawmakers to push for an executive order that would speed up the approval process.
“If I don’t get more treatments, I will die,” Bedwell said.
In August 2019, Bedwell shared that a clinical research trial called “NurOwn” was giving him back his life. He went from strained movements and an inability to speak to regaining his voice and mobility.
“I’m really surprised that it has actually reversed symptoms,” Bedwell said at the time.
Dr. Robert Brown is a medical school professor for the University of Massachusetts, and he was on the team that designed the trial.
“What we’re doing in this trial is harvesting stem cells from bone marrow and giving back either those stem cells or placebo to patients via the spinal fluid,” Brown said.
The benefits of the trial lasted only four-six months, Bedwell said. Since the FDA still hasn’t approved the treatment, he’s unable to continue doing it.
“I’ve been to the FDA three times now, and they’ve just dragged their feet,” Bedwell said. “We need this now. I don’t want to die.”
Next week, Bedwell will return to Washington D.C., a place he’s frequented on his own dime to meet with congresspeople, including Arkansas Sen. John Boozman, in hopes they’ll help him push for an executive order.
“This’ll be the third time in about four months,” Bedwell said.
Bedwell said he hopes lawmakers do their part to eliminate the disease that kills someone every 90 minutes.
“We need an executive order now and not later,” Bedwell said.