COLUMBIA — A bill that seeks to allow children with severe epilepsy to legally use oil derived from marijuana advanced on Thursday to the South Carolina Senate floor, but with so many restrictions, supporters say it won’t help those for whom it’s written.
The Senate Medical Affairs Committee unanimously approved allowing use of cannabidiol, or CBD oil, but only as part of clinical trials testing federally approved drugs.
Sen. Tom Davis said he wanted to allow wider use of CBD oil to control seizures. But both the South Carolina Medical Association and State Law Enforcement Division raised concerns about the purity of oils not controlled by the Food and Drug Administration, and he knew the bill stood no chance with their opposition.
“There’s no denying it’s further restrictive, and that’s just the political reality,” said Davis, R-Beaufort. “I want to get something passed that will provide some relief to patients as soon as possible.”
He proposed the bill to help a constituent’s granddaughter. Harriett Hilton’s 6-year-old granddaughter, Mary Louise Swing, can suffer up to 200 seizures an hour without medication. But even on multiple prescriptions, they continue. Her family hoped the CBD oil would help her live normally. But the bill won’t provide the access she needs because the clinical trials are too limited, Hilton said.
The FDA has granted orphan drug status for Epidiolex, an oral, liquid form of CBD, for use in rare and severe childhood forms of epilepsy. The designation provides incentives and allows for testing of drugs that treat rare diseases. The second phase of a clinical trial is expected to start later this year. But that’s limited to two specific syndromes of childhood epilepsy.
Nationwide, only 125 children are eligible to participate, Hilton said.
Mary Louise’s mother, Jill Swing, said Thursday she’ll probably have to move to Colorado, where marijuana is legal. Last week, she asked the Medical Affairs subcommittee to pass a bill that won’t require her to do that, as it means splitting up her family – leaving her husband and Mary Louise’s twin brother here.
“That’s something I don’t want to do,” she said.
Swing and Hilton disagree that CBO oil is impure if it doesn’t come from the federal government. They contend Colorado regulates it to be organic and mold-free, which is especially important for chemotherapy patients.
Sen. Brad Hutto said the bill should be much broader, but he’s glad the Legislature is at least taking it up.
“This is South Carolina, and we take baby steps,” said Hutto, D-Orangeburg. “It’s been needed to be done for awhile, and people have shied away from it. This is serious stuff. These are children, and this is one of the only things found to alleviate the suffering.”
Also testifying last week was Dori Lavelle of Summerville, whose 3-year-old grandson Julian is the namesake of a similar bill advancing in the House Judiciary Committee. Despite taking 12 pharmaceuticals, he continued to suffer 40 seizures daily. Desperate to help him, Lavelle said, her daughter moved her family to Colorado earlier this month.
“He’s a 3-year-old boy in constant state of sedation. He’s drugged up on drugs that are supposed to be helping him. This is the treatment that’s available to him,” she said. “It’s a shame my daughter had to uproot for medication that’s proven to be effective. I am disappointed as an American citizen that depending on what state one resides in depends on the treatment.”