After double hip surgery last April, 8-year-old Beatrice Kennedy, who suffers from cerebral palsy, began experiencing intense seizures, most often as she was trying to sleep, a potentially deadly combination. Her mother Cary placed her on Klonopin, but the drug can impair cognitive abilities, already weakened for Beatrice. The Round Rock family of five considered moving to California or Colorado to obtain medicinal cannabidiol oil for treatment.
"It was really stressful because there was nothing we could do at the time," said Cary. "The meds we tried to help curb her seizures only helped for a week or so."
The Kennedys saw a gleam of hope when the Texas Legislature passed Senate Bill 339 in 2015, allowing for the production and sale of a strain of low-level tetrahydrocannabinol (THC) and high cannabidiol (CBD) medicinal cannabis for patients with epilepsy not helped by pharmaceuticals, with a prescription from a physician. Last year, three dispensaries in Texas were awarded licenses to start growing under the Compassionate Use Program, including South Austin's Compassionate Cultivation. In March, the Kennedys obtained CBD oil from the local dispensary and saw an immediate difference – Beatrice's night seizures stopped. Not only that, but she became more alert, more playful, and began showing signs of laughter.
Lockhart mother CJ Jakel shares a similar story of her young son, Callen. Diagnosed with epilepsy at 17 months, he underwent 100-200 seizures a day. The intensity and duration of seizures fluctuated over the past seven years; but since taking CBD oil, Callen hasn't had a seizure in 107 days. "I 100% believe that it is due to the oil," said CJ. However, initially it was difficult for the Jakels to get a prescription; Callen's neurologist wasn't yet on the Compassionate Use Program doctor registry, and it takes not one but two physicians to get the oil.
That problem stands as one of the major barriers to access for the state's estimated 150,000 intractable epilepsy patients, who have only a pool of 42 physicians to consult for the substance.
Since securing a state license last October, Compassionate Cultivation has grown 14 marijuana plant harvests and served nearly 350 patients, with a 70% success return rate. CEO Morris Denton said the lack of failures in its operations so far is "almost unheard of" for a startup in a new industry, and hopes lawmakers soon allow for an expansion of the product. Right now, CBD oil is one of the "hardest" medications to get your hands on, said Denton. The way the program is set up makes it "very restrictive and flat-out onerous" for a doctor to get registered.
"We've got to find a way to reduce the complexity and difficulty in getting doctors on the registry," said Denton. "We've now proven that this works, so why wouldn't we be finding a way to make it less cumbersome to get and more readily available? I'm sure many potential patients aren't getting access today. It's as simple as that."
One of those few participating doctors is local neurologist Dr. Karen Keough, of Child Neurology Consultants of Austin. Keough is one of four CBD-prescribing doctors in the Austin area. She's seen various results in patients but overall has found the oil is "more impactful" to a higher portion of patients than she "ever imagined." About 20% of patients taking the Lonestar CBD oil have shown marked improvements, while 10 patients have reported a more than 90% reduction in seizures.
Elated for her patients' progress, Keough still worries about not just the low number of her colleagues on the state registry, but their location, pointing to strained access in rural areas. Indeed, in our review of the Texas Department of Safety physician registry, most prescribing doctors are concentrated in major metropolitan areas like Houston and Dallas. We couldn't locate any south of San Antonio or in all of West Texas.
Keough recognizes the registry is clunky, time-consuming, and there's a lot of back and forth. Adding to those barriers is the notion a doctor can potentially be held liable for prescribing a schedule 1 narcotic, illegal by federal law. Heather Fazio of Texans for Responsible Marijuana Policy attributes the small number of docs to the bill language. Authors chose to use the word "prescribe" in lieu of "recommend" as most states that allow medical marijuana have done, shifting greater liability to physicians.
"Using 'prescribe' likely crippled this program because of how dangerous it is for doctors," said Fazio, who long predicted this problem. "Changing it to 'recommend' would give them the reassurance what they're doing won't get them in trouble with the DEA." Fazio's group – with commitment from Rep. Eddie Lucio III, D-Brownsville – is working ahead of the 2019 legislative session to make the program more inclusive and less potentially dangerous for doctors.
In the meantime, physicians like Dr. Keough remain undeterred by the many state-imposed barriers. "If the feds wanted to crack down on the cannabis industry, I doubt they're going to start with a neurologist in Texas treating children," said Keough. "I think they have bigger fish to fry."
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