Pippa Hull sits on her mother’s lap across the kitchen table in their Parkville home. She is an outgoing and talkative seven-year-old girl, who just happens to have a rare and severe form of epilepsy called Lennox-Gastaut syndrome. Pippa’s mother, Megan, said this form of epilepsy is characterized by its lack of response to treatments.
Hull said they have tried different medications, they have had a VNS or Vagus Nerve Stimulation device implanted in Pippa’s chest, and they have even tried a special diet to try and reduce the number of seizures Pippa experiences.
But Hull said, “She has been through 8 medications so far and she is on 4 right now, and she still has seizures.”
She explained that when patients with epilepsy have tried multiple treatments that don’t work the epilepsy is termed “intractable.”
Last summer, a bill was signed into law by Governor Jay Nixon that makes it legal to grow hemp in the state of Missouri so CBD or cannabidiol oil can be extracted and used as a treatment for people with intractable epilepsy.
CBD oil is a hemp extract, and anecdotal evidence suggests that CBD oil helps reduce seizure activity in people with intractable epilepsy and does not produce psychoactive effects like THC.
Hull said there are many reasons that they would like to try CBD oil treatment including fear of the side effects associated with the medications Pippa is currently taking. Also, if the CBD oil can lessen seizure activity, it would also lower the amount of brain damage caused by seizures and reduce the chance of SUDEP or Sudden Unexplained Death in Epilepsy.
"It's like legalizing unicorns because CDB oil is about as mythical a creature in Missouri right now."
For the Hull’s to obtain CBD oil, they have to get a hemp extract registration card through the Department of Health and Senior Services. This card requires the family to get a signature from Pippa’s neurologist, and Hull says he could not sign the paperwork because the hospital has barred the prescription of the oil, as it is still federally illegal as a marijuana product.
It has been more than seven months since the legislation was signed into law and Hull said she is disappointed in the lack of progress.
“It’s like legalizing unicorns because CDB oil is about as mythical a creature in Missouri right now,” Hull said. “You can get a card that said you can have it, you can obtain it and you can possess it, but there is nowhere to get it.”
Senator Eric Schmitt, R-Glendale, was a sponsor of the bill and said he is aware of the problems faced by Missouri families.
He said that he has received emails from dozens of families who have talked to their neurologists and been told the doctor won’t recommend CBD oil. Schmitt said he is working with a few hospitals in St. Louis to ensure that families could have access to a neurologist that will sign the necessary paperwork for a registration card.
According to the Department of Health and Senior Services, four people have successfully obtained hemp registration cards in the last seven months.
Currently, there are no locations for these families to obtain CBD oil, but the Department of Agriculture announced the two licensed non-profit growers Wednesday.
The two non-profits are BeLeaf Corporation in St. Peters, Missouri, and Noah’s Arc Foundation in Chesterfield, Missouri.
Mara “Mitch” Meyers is a partner in BeLeaf Corporation and said, “We are thrilled to be one of the two selected.”
Meyers said the group hopes to break ground on a greenhouse in the next month, have plants growing in three months and then spend another three months growing the hemp and processing the oil. She said BeLeaf hopes to have CBD oil prepared for those with registration cards by September.
Meyers said each of the two growers will be required to open three locations where families can obtain the CBD oil, and she is confident that the locations will be spread throughout the state.
Schmitt said he has been looking forward to the licenses being issues to growers since he filed the bill last year, and he is grateful the two non-profits can begin work on producing CBD oil.
“We are that much closer to providing families with hope for the future.” Schmitt said. “The next step will be to ensure families that need the CBD oil know how to access the treatment.”
Hull said it’s great that things are starting to happen, but she and her family will continue to wait and work toward finding a neurologist that will sign the paperwork for Pippa’s registration card.
“I would drive anywhere in the state, to any doctor as long as I could get them to sign it. At least then I would have the card when the oil does become available, whenever that will be,” Hull said.
