According to Fox23 News, an Oklahoma man who suffers from ALS recently petitioned a California drug company called Collaborative Medicinal Development (CMD) for the “right to try” their experimental ALS treatment.
Mike Henson told Fox reporter Shae Rozzi that he was diagnosed with ALS last year after experiencing years of weakening in his legs. Prior to his diagnosis, he was a regular golfer and tennis player, and he participated in water sports. His first sign of disease was the inability to climb a flight of stairs.
In support of his petition is the legendary high school football coach Allan Trimble, who was also diagnosed with ALS three years ago. In an interview with Rozzi, Trimble revealed that his symptoms have greatly worsened since his diagnosis. The esteemed coach was forced to retire, as he is now in a motorized wheelchair, needs help catching his breath, and will soon need a feeding tube.
Henson and Trimble united at Fox 23 studios with Rozzi where they discussed their joint petition to allow them — and other ALS patients — the chance to try a promising treatment. Henson told Rozzi that getting this petition approved is “everything” to him. “It’s life,” he said. “It’s life and death.”
The drug Henson and Trimble are requesting is called CuATSM, and according to CMD, it delivers copper to hypoxic tissue. It’s currently approved for use in PET scans, but not to treat ALS. Rozzi reports that studies done by the University of Oregon and the University of Melbourne, Australia have shown that the drug slows the progression of ALS in mice. Researchers at Melbourne have also seen disease-regression in humans.
“The drug slowed the progression, in some cases, by as much as 70%,” Henson told Rozzi. “It would be simple to manufacture and cost-efficient. We’re not asking for it for free, we’re asking for the right to be able to purchase it.”
Henson sent his petition earlier this month with over 50,000 signatures and a personal letter. Rozzi also contacted the company herself. Both received a response from the company’s COO, Kay Noel, PhD. Noel claimed the drug was too early in its development to be offered to the public, even under Right to Try.
“At this early stage,” he wrote, “our preliminary results are not yet definitive and we are not in a regulatory or practical position to be able to offer CuATSM under ‘Right to Try.'” The complete response can be found on Fox23’s website.
But that’s the issue with ALS treatments. They’re all too “early in development” and could be harmful. Henson says patients like him hear it all the time. “The drug could be dangerous,” he told Rozzi. “As opposed to what? ALS?” Trimble added, “It can’t be any bigger risk than having a terminal disease.”
These men feel that opportunities like this one are the reason President Trump signed the federal Right to Try Act last May. Since then, he’s been proudly advertising the accomplishment, most recently in his State of the Union address and at a rally in El Paso, Texas. But only two people have publicly reported accessing drugs under the law, and many have been turned down by drug companies, including Henson and Trimble.
“We have drugs in the pipeline that are showing tremendous progress,” said Trump at a rally last week. “If somebody is terminally ill, let’s let them have access to our drugs.”
Well, now is his chance to make that happen. Henson and Trimble hope this petition grabs the attention of CMD, the FDA, and President Trump. “President Trump,” Henson said, “If you’re watching this right now, this is it. I would say to the company, and to the FDA, and to the president, this is an opportunity to prove that Right to Try works.”