A Kansas family is fighting some of the strictest state CBD laws in the country in the hopes of saving their daughter’s life.
Twelve-year-old Lola Hartley lives with spastic quadriplegic cerebral palsy and has up to 30 seizures per day. She also has microcephaly and asparagine synthetase deficiency, a rare genetic disorder that affects just 20 people worldwide. Her sister, Clare, died from the same condition last summer at age 17.
Their mother, Gwen, is seeking relief for Lola. She wants to try treating her with CBD oil, but the type she wants to use is forbidden by state law because it contains small amounts of THC.
“We have no other option. This is my last chance to save Lola,” said Gwen to radio station KCUR. "Our goal isn't to get our daughter high. Our goal is to settle her brain ... simply to calm her so that she's able to learn and her body's able to relax and give her some peace.”
Gwen’s efforts have received overwhelming bipartisan support. State Rep. Mark Schreiber (R) has sponsored House Bill 2244, which already passed the House and now moves to the Senate.
The bill provides an affirmative defense should someone be charged with possessing oil containing THC. In order for the defense to be valid, the person in possession must have a doctor’s letter justifying the treatment and documentation showing necessary testing has been conducted. The oil must also contain less than 5% THC. Because the sale and production of this oil would still be illegal in Kansas, those with the documentation still must travel out of state to obtain it.
"It's not perfect, but it does provide an avenue to give them some options,” said Schreiber. "My purpose here is not a progression of statutes down the road. My purpose is to help folks like Gwen and Lola, to provide an option for some relief.”
The only CBD product currently allowed in Kansas is the FDA-approved drug Epidiolex, which does not contain THC. Gwen has said that legislators have “embraced her family” and understand her urgency, but it’s still unclear if or when the bill will be signed into law.
“I don’t want to break the law,” said Gwen. “But when you’ve buried one child and the thought of having to bury another…I’m terrified.”