Correction: In the original version of this story, The Associated Press erroneously reported that neurosurgeons can certify patients to receive the oil. Only Neurologists can do so.
A corrected version of the story is below:
KANSAS CITY, Mo. (AP) - Efforts to make cannabis oil available to Missourians with a severe type of epilepsy are off to a slow start, mostly because neurologists are reluctant to certify patients to try a treatment that does not have federal approval.
In 2014, the Missouri Legislature legalized cannabis oil to treat an intractable type of epilepsy that can't be controlled by medications. Darla Templeton, director of the Epilepsy Foundation of Missouri and Kansas, estimates 18,000 Missourians could be eligible for the treatment.
So far, nine neurologists statewide are willing to allow patients to try the treatment and only 15 patients are certified to receive it. That has led the two groups with licenses to grow industrial hemp and extract the oil to scale back their plans. They say they are still determined to eventually provide the oil, perhaps by January.
The cannabis oil contains a chemical called cannabidiol, or CBD, and does not produce the high that users get from marijuana. Neurologists unwilling to certify patients for the treatment say it is not FDA approved and that more medical research is needed to determine proper dosing and possible long-term effects.
"It's been disappointing to a lot of people, us included," said Mitch Meyers, of BeLEAF Corp., one of the two license holders.
Meyers originally intended to build a greenhouse and processing facilities in St. Charles County but will instead lease a building in Earth City to start her operation. Jason Strotheide, of St. Louis County, whose Noah's Arc Foundation has the second license, is planning a 1,440-square foot greenhouse with 50 to 100 plants, rather than a 3,000- to 5,000-square foot greenhouse with close to 1,000 plants.
"It is so heartbreaking," Meyers said. "They know the law was approved and they can't get it. We've had some hard conversations with people wanting this."
One of those people is Bridgit Patterson, of Liberty, whose 18-year-old son, Colby, has had epilepsy for 10 years. He is on his sixth, seventh and eighth medications, which provide only some control of his seizures. Because no neurologists in the Kansas City area will certify the use of CBD, Patterson has considered traveling to St. Louis to receive certification.
"What if it is the one drug that would work for Colby?" she said. "What if it would change his whole life, help his learning, get his seizures under control? It's out there and it's working for some people. I don't know if it will work for Colby but I want to try."
The state law requires a neurologist to certify that at least three different treatments have not worked before the patient can try CBD oil. The Missouri Department of Health and Senior Services then gives those patients, or their parents, a registration card, which they could use to get the oil at a retail outlet.
The Food and Drug Administration has classified CBD oil as a Schedule 1 drug, meaning it has no medical use and a potential for abuse. That classification is the core of the problem, Meyers said, because the hemp that produces the cannabis oil is non-addictive and has no side effects.
It also has made some neurologists and hospital systems reluctant to be part of the program. The only Missouri hospital allowing its neurologists to certify patients is Cardinal-Glennon Children's Medical Center. No Kansas City-area neurologists are certifying patients.
Children's Mercy Hospital in Kansas City said in a statement that current epilepsy treatments have been proven safe and effective through clinical trials.
"The use of hemp extract oil in the treatment of intractable seizures is not scientifically proven to be efficacious or safe in children or adults, and to date, there are no human studies that that have found this treatment to have an effect on epilepsy," the statement said.
Strotheide said he believes hospital administrators are afraid of losing their Drug Enforcement Administration licenses, while others are reluctant to support an alternative medicine that doesn't generate revenue for hospitals.
"This is a last hope for many people," he said. "Hospital administrators need to lighten up their regulations a little bit. It will not cure everybody but for some patients everything else has failed. The state has vetted us, the treatment is legal for consumption. People ought to have access to it."