The Primary Children’s Hospital in Salt Lake City, Utah say they are days away from getting federal approval to conduct a CBD oil trial study on 25 children with severe epilepsy. In the meantime, however, they have been granted permission to study a CBD-oil pharmaceutical drug, Epidiolex, from British GW Pharmaceuticals.
The study’s lead author, Francic Filloux, says he is waiting on the DEA’s approval and will begin the program as soon as possible. Even though CBD oil is non-psychoactive and the product is being made in pharmaceutical-level conditions, the government still thinks it is marijuana and has to give approval before any large organizations can officially study it.
“This is a federally approved study. I see no barriers other than bureaucracy,” he said. “We’re very excited to be doing this. Our teams here recognized that this was an emerging need and started to put this study together in 2013.”
The study will enroll 25 kids, and all will get the medicine.
But parents of patients who just can’t wait are now allowed to get CBD oil in Colorado and bring it back across the border to Utah so long as they have signed up with the state and have a doctor’s recommendation. Kids who are in the study are not allowed in the state CBD program, and vice-versa.
That’s a trek and not a cheap one at that, but one that families like the Henries from Clinton, Utah, are willing to take. Their eight-year-old son Cutler battles cornical dysplania, which causes him to have severe seizures. His family says they’ve tried eight different seizure medications and undergone surgeries, but nothing has helped.
“He’s tried eight different seizure medications and he has a VNS, a vega nerve simulator so Cutler has gone through surgery,” said Natalie Henrie. “To have this door open up, it’s amazing.”
Technically, the state CBD law starts July 1. However, the state says they won’t begin the registration program until July 8 — yet another delay for parents chomping at the bit for legal access for their children.