Gwen Hartley begged Kansas legislators Tuesday for the opportunity to make use of an oil with no more than 5 percent of the active agent in marijuana to help her daughter, Lola, cope with a profoundly rare medical condition that doctors predicted would be lethal before her first birthday.
Lola and her late sister, Claire, have profound special needs resulting in cerebral palsy, seizures, developmental delays, dwarfism, hip dislocations, scoliosis, feeding difficulties and more. The girls' ultra-sensitive bodies meant neither could use typical pharmaceutical drugs. Treatment included vitamins, essential oils and hydrotherapy.
Hartley said physicians and her family attributed Claire's ability to survive until Dec. 17, 2018, in part, to the unorthodox regimen. Claire's death prompted the Hartleys to attend the House Judiciary Committee hearing in Topeka, where they joined in debate on House Bill 2244. It would provide people an "affirmative defense" in court if arrested for using oils with limited THC content for medical purposes.
"We beg you to give us a chance to try low-THC cannabidioloil with Lola," Hartley said. "More than ever now, we feel the urgency and it's all-consuming. There is no other reason I would be pouring myself into passing this law just two months after the death of my child except to save the life of one of my other children."
During the hearing, the Kansas Bureau of Investigation and a coalition of three other Kansas law enforcement associations argued against passage of the bill.
"The 5 percent THC that is allowed by this legislation is clearly intoxicating," said Eric Voth, a Topeka physician and prominent anti-marijuana campaigner. "It is alleged to be intended to help seizures, but there is no evidence that this is based in research."
KBI executive officer Katie Whisman said she realized tremendous suffering by people afflicted with debilitating conditions, including seizures, but the cases couldn't lead the state's highest law enforcement agency to endorse a bill in conflict with federal law. Language of the House bill made it a platform for wide use of CBD oil treatment in Kansas, she said.
Rep. Mark Schreiber, an Emporia Republican who sponsored the bill, said Kansas lawmakers should provide an alternative to expensive medicines touted by opponents of medicinal marijuana. The CBD medicine approved by the U.S. Food and Drug Administration for seizure disorders, Epidiolex, costs $1,298 for a bottle sufficient for a couple months of treatment, he said.
He said parents of suffering children -- certainly not criminals -- weren't asking for legalization of cannabis nor insurance coverage of the exotic treatment. They are requesting legal standing to argue in court, if arrested for possession of the special oil, that it was obtained in an attempt to address a potent health disorder, Schreiber said.
"As an oil-based product," Schreiber said, "it has zero interest from those who use marijuana recreationally."
Democratic Rep. Jim Ward, of Wichita, said consideration of the bill reflected an incremental shift by the Republican-led Legislature toward reforms that would allow for medical application of marijuana products in Kansas. He believes a full-fledged medical marijuana bill could pass the House and Senate and Kansas voters would approve of medicinal marijuana if the question were placed on a statewide ballot.
"It's more evidence that Kansas is ready to move forward and address marijuana issues in a more intelligent way," Ward said.
In the Senate, the Public Health and Welfare Committee scheduled a hearing Thursday on Senate Bill 113. It would allow medical cannabis to be purchased at dispensaries for individuals who receive a doctor's permission to manage pain related to established medical conditions.
Sen. Tom Holland, D-Baldwin City, said the medical cannabis bill would grant veterans exclusive access to dispensaries in the first 60 days the law was in effect.
"This legislation provides a highly controlled yet transparent framework for allowing Kansans safe and legal access to medical cannabis. Because wounded warriors were put on the front line, this bill puts our veterans at the front of the line," Holland said.