ST. LOUIS, MO (KTVI)- A form of medical marijuana may be legal in Missouri, but patients are finding doctors afraid to even discuss it. It’s called CBD hemp oil, extracted from a type of marijuana that cannot get you high. It’s now legal in Missouri for treating intractable epilepsy, but families say some doctors are afraid to honor the new law.
Robert Tufts, 11, says it hurts when he seizes.
“It just feels like some sort of shock like, my brain, inside my head. I’ll just get a little fuzzy feeling and I’ll shake and I’ll be dizzy for a second.”
He takes a handful of pills he says sometimes make him feel worse.
“It just felt like I was so enraged and wanted to break everything.”
His mom, Stephanie, thinks CBD oil could be a better way, but she can’t convince her son’s doctor.
“His exact words to me were, ‘It’s not legal,’” said Stephanie Tufts. “I said well the oil is legal here in Missouri and he basically came back with, ‘It’s not. The DEA doesn’t see it as legal’ and that’s where he gets his medical license.”
FOX 2 has learned only 66 families in Missouri have obtained medical cards to buy CBD oil, with potentially thousands of families asking for it.
Treasurer Eric Schmitt fought for the new law when he was State Senator.
“This idea that you’ve tried everything and it’s not working, but there may be something that is now legal in the State of Missouri to now possess and use and that a doctor and a hospital would not allow families to access that – there’s no excuse for it,” said Schmitt.
Schmitt has met with hospital administrators across the State trying to get them to reconsider.
“I know for a fact that there are neurologists in those hospital systems that want to be able to recommend, but are not being allowed to by the lawyers. And I think that that’s just…it’s unconscionable.”
There is one hospital working with patients. It’s in St. Louis, SSM Health Cardinal Glennon Children's Hospital.
Dr. Sean Goretzke with SSM said, “Even though there might be some negatives and some side effects, (we felt) there was a certain percentage of patients that we owed it to to do everything we could to try to help within a safe and reasonable effort.”
Dr. Goretzke is director of child neurology at SSM Health Cardinal Glennon Children’s Hospital.
“Cases where this works are really highly publicized. There’s a lot of social media attraction to it and those are great and we’re happy about those. But we know this isn’t going to work for every patient, just like every other medicine we have.”
Patients must first try three traditional prescriptions without success. The marijuana strain that’s cultivated for its CBD oils does not contain the psychoactive THC, which hurts brain development, but Dr. Goretzke says there’s no research to answer whether CBD oil could still present risks.
“The majority of kids we are treating with this substance are so delayed from the burden of their seizures, maybe from the side effects of their other medications, that we feel the potential benefit for this medicine far outweighs those risks,. But with a typically developing child we’re still just not quite sure yet.”
He acknowledged they must start somewhere, but said it would help if there was research money to help answer their concerns. Dr. Goretzke also said this is not a mandate and the hospital will respect individual doctors who might not want to be part of it.
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