JJust down from lush Lexington pastures where horses graze, a winged child searches for caterpillars on a warm September evening. Her name is Paige Charles, and she hopes to be a fairy when she grows up. The costume the 13-year-old wears reflects this desire.
A quiet breeze carries the scent of earthiness from the green buds that surround her. Oil from these hemp plants has transformed Paige. With its use, she no longer rages through her days. Calmness transcends her. Within a month on the CBD oil, she became potty trained. Now she reads, something her doctors never imagined.
“She started communicating with her words,” says her mother Brenda Charles, who with her husband adopted Paige shortly after her birth. “Sometimes they were loud words, but she was using them. We were happy.”
The aggressive behaviors brought on by her autism and Fetal Alcohol Syndrome have gone away. No more restraints used on her at school. No more tantrums.
“We continue to see her beautiful personality blossom,” Brenda says. “I don’t know where we would be without it.”
Legislation enacted by both Kentucky and the federal government allowed this magic to happen for children like Paige. In 2014, KY Senate Bill 124 legalized cannabidiol, commonly called CBD, a compound found in cannabis plants. Time and time again, stories have been told about the oil’s tremendous properties to soothe a host of conditions. Seizures have been lessened. Anxiety decreased.
Through the same legislation, the Kentucky Department of Agriculture (KDA) also began both commercial licensing and a hemp pilot program, allowing farmers the chance to legally grow the once popular plant in the Bluegrass state for the first time in more than 50 years. As of 2016, 166 growers have been approved. Some experiment with industrial hemp fiber that can be turned into cloth, rope or even biofuels; others with the powerful oil that can be pressed from its buds and seeds.
But federal laws contradicted these states attempts. Folks tend to unfairly lump hemp and its cannabis cousin marijuana into the same category. While related to pot, varieties of hemp contain high levels of CBD while containing little tetrahydrocannabinol (THC), the agent responsible for the mind-altering effects of marijuana. In other words, hemp and its oil can’t get users high.
With the Farm Bill of 2014, supported by Kentucky’s Sen. Mitch McConnell, the U.S. government provided support for hemp growers as well, legalizing the trade for research purposes in states that had already had enacted similar measures.
Inconsistencies about the legality of hemp within the federal government do remain. Even as the plant remains a Schedule 1 controlled substance by the DEA, the industry continues to grow.
The fields here at the Kentucky Cannabis Company in Lexington are proof of this.
For founder Bill Polyniak, farming hemp and producing CBD oil is personal. His son Colten, who had his first seizure at 3 years old, takes his product. Repeated episodes of epilepsy can damage children’s growing brains, at times irreparably. Colten was experiencing hundreds a day. Doctors told his parents that his impairments would force him to never leave their house.
After he began the CBD oil, his seizures stopped. So have the prescribed medications that wrecked his body with side effects. Now 11, Colten will play football for the first time, leading the life of a typical fifth grader.
“When you get into the history of it and you sit here and look back today, I don’t give a rat’s ass about what the federal government says. Look at what the preponderance of evidence clearly dictates,” Bill says during a tour of his 4-acre Lexington facility.
Additional fields, including 40 acres in Mercer County, have been bought as well. They sell their oil to all 50 states through their website, much of it to parents for their children. Even as a 1,000 pounds of hemp waits to be processed, the company finds it difficult to keep up with demand.
“Kentucky, for the first time, is really ahead of the game… As manufacturers make higher and higher quality stuff, you’re going to start to see epilepsy get its ass kicked,” he says with energetic optimism. “The people of Kentucky, we’re moving forward, and the whole state has hope.”
At the beginning of twilight, with an almost full moon traveling between the trees, Paige finally finds a wooly worm hidden in the edge of a greenhouse. She giggles as it tickles her palm.
Dr. Gregory Barnes, Director of University of Louisville’s Autism Center, deals in both medicine and statistics.
As part of the 2014 Kentucky legislation, the University of Louisville was allowed to conduct research and participate in Food and Drug Administration trials involving CBD oil. Barnes works with the marijuana-derived medicine Epidiolex by GW Pharmaceuticals and has conducted trials to determine its effectiveness in curbing pediatric epilepsy, in particular, a subset of the disease called Dravet Syndrome.
So far, the randomized, double-blind studies have proven successful. The medicine had a greater effect in reduction of seizures compared to the placebo. Barnes now is looking for patients with autism to participate in similar CBD-related research.
“This is, in fact, a substance that has been rigidly studied and that is in fact not psychoactive and is safe to use, especially with children and adolescents,” Barnes says, noting few side effects with the drugs.
“It’s an interesting set of compounds that has possibly diverse biological effects. That certainly is driving the interest in the medical community.”
Paradoxes within federal regulations do make the process harder.
“In my clinical practice, the federal government does not recognize my right to prescribe a Schedule I substance,” Barnes says. “Now the state law does, but the federal doesn’t. And that is the problem with the law.”
Kentucky legislators on both sides of the aisle will look to rectify the discrepancies in future sessions. And while the increased scrutiny of the trials should reassure the public, federal rescheduling of marijuana would also lessen the difficulties in obtaining and prescribing medicines and carrying out the research.
“Is it a little bit more trouble?” Barnes asks. “Most definitely it’s a little bit more trouble, but on the same token, it does guarantee to even the most rigid skeptic… that there have been incredible processes in place.”
“It’s worth it.”
In her Louisville home, Suzanne Maria De Gregorio shows a video of her son Alex as an infant trying to crawl. On the screen, her voice brings smiles to the child’s face as he inches toward her. He’s healthy in every way.
By age three, his behaviors began to change. Red flags indicated he had autism. By the time he turned six, the regression continued. Alex again needed diapers, and slowly spoke less and less. Petite Mal Epilepsy would be discovered as the cause of his decline. Silent seizures had damaged parts of his brain.
“We got him on the antiepileptic drugs, and they helped but they never were enough,” Suzanne says.
Neurological episodes would cause him to be aggressive at school, and so Suzanne quit work to care for him when he was sent home.
“The child would wake up screaming and go to bed screaming,” she says. “It was a very rough life for him.”
Alex now sits beside me showing me a selection of tea in a lunch box. He’s calm and laughs and tells me later of his favorite cakes, cookie and red velvet. Nothing is missed. He listens to everything, an all-encompassing awareness
Suzanne, who advocated for the Kentucky legislation that legalized CBD oil, sits relaxed in a chair. She asks Alex if it’s ok to speak to me about the hard times before he began taking the supplement called Charlotte’s Web. Like the product that Paige takes, this CBD-rich oil is also obtained from hemp.
Alex smiles. Suzanne takes that as a yes.
In April of 2015, after the legislation passed her son began the drops shipped from Colorado. Almost immediately, he calmed and began speaking more. His fine and gross motor skills improved, allowing him to master riding a bike for the first time since the age of five.
Best yet, his seizures stopped, and he’s down to only two anti-seizure prescription medications.
But the supplement comes at a price. The product costs $250 for a three-week supply, with insurance not covering any of the cost.
“It’s worth it,” Suzanne says. “We live it. It’s a miracle.”
And with the DEA designating marijuana and hemp as a Schedule I drug with supposed no medicinal value and, according to the agency but questioned by proponents, a high propensity for addiction, parents of children who benefit from these derivatives are worried. Enforcement or a shift in priorities could halt the sale of these much-needed oils. Greater federal protections remain needed.
“A lot of parents are afraid. One of the reasons why I want to speak out like this and shine a light on it is because this cannot be taken from him,” Suzanne says.
“It would send him back to hell.”
Contributing columnist Amanda Beam’s social justice column appears every other Sunday in the Courier-Journal’s Forum Section. Feel free to let her know your thoughts and column ideas by emailing her at [email protected].