The fight over medical marijuana hits home 

Taboos and Treatments

click to enlarge Jill Swing and her daughter, Mary Louise, are living proof of the positive effects that CBD oil can have in treating children with epilepsy

Jonathan Boncek

Jill Swing and her daughter, Mary Louise, are living proof of the positive effects that CBD oil can have in treating children with epilepsy

The South Carolina Controlled Substances Therapeutic Research Act of 1980 had been on the books for more than three decades when state Sen. Tom Davis first met Harriet Hilton. Before sitting down with Hilton, the Beaufort senator had never given much thought to introducing legislation regarding medical marijuana, but the story he heard that day in 2014 set Davis on a new path. It was that day that he learned about Hilton's young granddaughter, Mary Louise Swing.

Mary Louise, now eight-years-old, has cerebral palsy and intractable epilepsy. In the past, she would experience as many as 1,000 seizures a day. She's been on numerous types of medications over the years, dealt with the adverse side effects, and visited specialists all along the East Coast, but nothing ever proved to be effective. Her neurologist said Mary Louise had run out of options and wasn't a candidate for surgery. It was around this time that her parents saw a television news special that told the story of a young girl in Colorado whose seizures were being treated using cannibidiol (CBD), an active ingredient in marijuana. Since CBD oil was prohibited in South Carolina at the time, Mary Louise's parents began looking into the logistics of moving.

"You can't just go out to Colorado and get it and bring it back," says Mary Louise's mother, Jill. "One thing is you have to be a resident of Colorado in order to get it there. And then when you cross state lines with it, you become a federal criminal."

Left with few other options, the plan would have involved splitting the family up. Mary Louise and her mother would move to Colorado, but due to obligations with his career, her father and twin brother would need to remain in South Carolina. Fortunately before this could happen, Sen. Davis reached out to the family. He wanted to amend the 1980 act, so that it could actually help children like Mary Louise. But he needed the family's help if his amendment were to get any traction.

The Controlled Substances Therapeutic Research Act of 1980 was originally intended to treat cancer patients with medical marijuana, but for whatever reason it never received the proper funding to make much of a difference. Using the 1980 law as starting point, Davis introduced a bill that would legalize the medical use of CBD oil in South Carolina. It was signed into law in 2014, but there was still a problem: Doctors could authorize the use of CBD oil, and patients could use it as a treatment, but no plan had been put into place on how to obtain it.

Faced with the challenge of finding a reliable source for CBD oil in South Carolina, many resourceful parents and patients were forced to look on the black market. Even then, those who gain access to CBD oil face problems as supplies dry up and connections disappear. Currently, 24 states plus the District of Columbia allow for medical marijuana, but similar legislation in South Carolina faces tough opposition. A recent Senate bill sponsored by Davis was voted down, with several lawmakers, such as Upstate Sens. Mike Fair and Harvey Peeler, and law enforcement agencies opposing medical marijuana out of fear that it would open the door for recreational use. Meanwhile, Rep. Jenny Horne of Summerville has sponsored a companion bill in the House.

"These things take time. Whenever a state starts to consider it, it's not usually the same year that they enact something," says Becky Dansky, a legislative analyst with the Marijuana Policy Project, which dedicates its efforts to ending marijuana prohibition. "It's still considered a controversial issue by some parts of the political world, so it does take a lot of education and advocacy to get something done. Obviously, we have a lot of work to do in South Carolina."

But while state lawmakers debate the possible outcomes of legalizing medical marijuana in South Carolina, residents like Jill Swing and her family must continue to live with the day-to-day reality of their decisions with the hope that change will come sooner than later.

"I don't have access to a safe, reliable, consistent, tested source of medicine for my child because they're afraid some recreational user is going to get their hands on it. It puts parents in a very dangerous position because if for some reason, say I chose to treat my child illegally, then if somebody found out, I could have my child taken away. What good would that do?" Jill says. "It's unfortunate that this is the position that we're in, but we'll keep fighting. That's kind of the best we can do at this point."

As resistance to medical marijuana continues in the Senate, medical professionals are reporting positive results in the use of CBD to treat severe forms of epilepsy in children. During the American Epilepsy Society's annual meeting in December, several studies reported a reduction in seizures among children being treated. One study conducted by researchers from New York University Langone Medical Center's Comprehensive Epilepsy Center found that almost half of the participants experienced a 50 percent or greater reduction in seizures after 90 days and 9 percent of patients were reported to be seizure-free. Lead author Dr. Orrin Devinsky said that the results still need to be confirmed through further studies, but it does provide hope for those dealing with debilitating seizures. A related study presented during the meeting examined the long-tern effects of CBD as an add-on therapy. Researchers found that seizures were reduced by 50 percent for a third of the patients in the first 12 weeks, and the reduction was maintained by 40 percent of patients for the entire year that the study was conducted.

"Since my daughter has been taking CBD oil, the good news is we know that she responds positively to cannabinoids, and we have seen some reduction in seizures, especially initially," says Jill. "The greatest benefit has been her alertness, and a lot of parents describe it as an awakening. They're just so alert and alive. She's starting to play with toys again. She's babbling, which she never did as a baby. She's just more interactive and curious."

But while Mary Louise's condition has improved, Jill still worries that South Carolina's current restrictions on medical marijuana will stand in the way of her daughter's continued health.

"So we have seen some benefits, but she is also maturing," says Jill. "A lot of times with girls, especially with epilepsy, when they start going through puberty, they develop more severe or different seizure types. That's kind of where we are now. We just feel like she is going to need something beyond what we can legally possess now."


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