The bill backed by Republicans decriminalizes cannabidiol, also known as CBD oil, if a patient has a doctor’s prescription or is participating in a clinical trial for treating severe forms of epilepsy. It also aims to protect doctors from being arrested or sued for prescribing or providing the oil in limited circumstances.
Rep. Jenny Horne, R-Summerville, said she named her bill “Julian’s Act” for a 3-year-old constituent who suffers dozens of seizures daily and whose family is moving to Colorado to access the potentially life-changing liquid treatment.
Her subcommittee advanced the bill to the full Judiciary Committee.
The Legislature’s only ER doctor, Rep. Kris Crawford, stressed the bill would do nothing for those who want to legalize marijuana for recreational purposes, but it could help people suffering with extreme forms of epilepsy.
“It’s important to draw a distinction,” said Crawford, R-Florence, adding that cannabis oil “shows some promise toward helping people live normal lives.”
The Food and Drug Administration 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 for drugs that treat rare diseases. The second phase of a clinical trial is expected to start later this year.
The narrowly drawn legislation is considered a baby step toward allowing medical uses of marijuana. But some supporters worry the legislation is so limited, it may not even practically help the epilepsy patients for whom it’s written.
In South Carolina, 104,000 people are diagnosed with epilepsy, and 2,100 new cases are diagnosed yearly, said Karen St. Marie, founder of South Carolina Advocates for Epilepsy.
Harriett Hilton, of Beaufort, asked legislators to broaden the bill to other monitored, consistent sources of CBD oil, to provide the needed access.
Her 6-year-old granddaughter still suffers up to 100 seizures an hour, despite taking many medications.
St. Marie’s 26-year-old son was diagnosed with epilepsy in 2007. He still suffers seizures despite taking more than 16 medications, participating in a clinical trial and undergoing surgery.
CBD oil “may be his last option to go back to the life he knew seven years ago. He’s not able to drive, work or go to school. There’s nothing he wants more than to go back to school,” she said.
Rep. Shannon Erickson, a co-sponsor, called the bill a start toward helping epilepsy patients.
“This issue is one we need to take in baby steps,” said Erickson, R-Beaufort. “The goal is to get ourselves to a discussion point.”
Chris Raffield of Sumter said South Carolina needs to jump fully into medical marijuana to help patients like him. The 45-year-old former Highway Patrol trooper was diagnosed with multiple sclerosis in 2008 and has undergone surgeries to remove tumors on his spine. He said he can’t eat without marijuana or Marinol – a synthetic, pill form of marijuana approved by the FDA to boost appetite. But he can’t afford the $800 monthly price tag of Marinol, which isn’t covered by his insurance.
Raffield, a self-described conservative who spent 17 years in law enforcement, said he’d never tried marijuana until he became ill and lost weight to the point his father feared he’d die.
“We’re not criminals. To live is being a criminal?” he said. “This is common sense.”
He prefers a bill introduced by House Minority Leader Todd Rutherford, D-Columbia. It would allow residents with a debilitating medical condition to register with the Department of Health and Environmental Control to legally use marijuana.
But that legislation is unlikely to go anywhere. South Carolina’s just not ready for that, said Sen. Tom Davis, R-Beaufort.
He’s introduced a bill similar to Horne’s in the Senate, saying he wants people like Hilton’s granddaughter to be able to get cannibas oil for relief. A Senate panel is set to hear his bill next week.