CHARLOTTE, N.C. (Cassie Cope | The Charlotte Observer) - Doctors predicted Jackson Helms would die by the time he was 6.
Now 19, Jackson has lived longer than expected and gained relief from his severe epilepsy because of cannabidiol, or CBD, says his mom Kelly Helms.
CBD has essentially no THC, which is the psychoactive element in marijuana that causes a high.
The full legalization of medical marijuana could help Jackson, his mom says. Medical experts in North Carolina support more research on medical marijuana.
The THC component of medical marijuana helps pull Jackson out of a seizure coma, his mom said. She has visited Raleigh to urge lawmakers to legalize medical marijuana.
But it could be years before patients get relief in North Carolina, where proposals to legalize medical marijuana have been introduced for a decade — and gone nowhere.
"That just goes to show you that the people are ahead of their representatives," said state Rep. Kelly Alexander, D-Mecklenburg, who has introduced medical marijuana proposals for about a decade.
Nationwide, 30 states and the District of Columbia have legalized medical marijuana. Recreational use of marijuana has been legalized in nine, including D.C.
Earlier this month, former U.S. House Speaker John Boehner, a Republican, announced he would push to legalize marijuana, joining the board of cannabis company Acreage Holdings.
Last week, President Donald Trump promised a Republican senator from Colorado that he would support efforts to protect states that have legalized marijuana. That came after Attorney General Jeff Sessions rescinded a policy in January from President Barack Obama's administration that allowed states to legalize marijuana without much federal interference.
In North Carolina, the professional organization of physicians supports researching medical marijuana further.
The North Carolina Medical Society says it backs "the development of well-controlled research of the use of marijuana and related cannabinoids in patients with medical conditions for which current evidence suggest possible efficacy."
Duke University's chief of palliative care gave a 2016 TED talk saying that medical marijuana gives patients control over their illness. David Casarett told the Observer that anecdotal reports of success stories tend to float to the top. That's because when medical marijuana doesn't work for someone, that person is unlikely to publicly write or blog about it.
But by legalizing medical marijuana, controlled trials would be possible and there would be research available, rather than just anecdotes, he said.
Patients are also currently reluctant to discuss medical marijuana use with their doctor because it is illegal, he added.
Jackson Helms has cerebral palsy and Lennox-Gastaut syndrome, a form of severe epilepsy that can resist treatment.
Jackson was born with his umbilical cord wrapped around his neck four times and got no oxygen to his brain.
He's had 80,000 seizures in his lifetime, his mom says. "More than I've had meals," she said.
For a while, he used pharmaceutical drugs, but the side effects were severe, his mom said.
They caused Jackson to have a bleeding disorder, cirrhosis of the liver and osteoarthritis, she said.
The bones in his hands would break when he knocked them against something.
The drugs also caused signs of aging. He had crow's feet at 15 and graying hair. "He was getting wrinkles before I was," his mom said.
In recent years, Jackson began taking CBD, which first became legal in North Carolina in 2014. The state's law limits CBD use to patients with intractable epilepsy.
Jackson now takes CBD three times a day, six days a week. On Sundays he doesn't get any to allow his system to reset.
Helms keeps her son's CBD paste in a small glass jar in her fridge. She calls it Jackson's "salad," because it's plant-based.
She scoops out the CBD paste from the jar and puts it in a syringe and mixes it with warm water. Then she inserts it in Jackson's feeding tube to give it to him.
Before the CBD, Jackson had 12 to 15 seizures a day. By comparison, he had six seizures all of last week, his mom said.
"It's so obvious and clear that this works for people," Helms said.
A gateway drug?
But opponents say they worry about the ramifications of legalizing medical marijuana.
"You're one step closer to effectively legalizing it for recreational use," said state Sen. Jeff Tarte, R-Mecklenburg.
Tarte said he's concerned about the effects of cannabis on the developing minds of teenagers.
He's also worried about medical marijuana still being illegal at the federal level.
North Carolina would need to learn from other states about the pros and cons of legalizing it, he said.
"I don't understand yet whether it's a gateway drug," Tarte added.
Garrett Perdue helped form an organization called Sensible North Carolina to push for the legalization of medical marijuana about a year ago.
The organization's first two goals were to expand patient classes that could qualify for CBD oil, and then expand the forms of cannabis derivatives allowed.
"However, we were not met with a very receptive audience," said Perdue, son of former Democratic Gov. Bev Perdue.
As a result, the organization decided to focus efforts in other states, and renamed itself Sensible South.
All four of North Carolina's neighboring states are closer to passing sensible medical marijuana legislation, Perdue said. "North Carolina is well behind the national trend," he said.
GOP lawmakers seem to be afraid that if they publicly were to endorse medical marijuana, they would face opposition in primaries, Alexander said. "Because of that, they are reluctant to just come out front."
It should not be a political or party-driven issue, Alexander said. "It's an issue of access to something that the citizens believe will help them."
Over the last 10 years, polls have steadily moved to higher levels of acceptance, he added.
Eighty percent of North Carolina voters support legalizing medical marijuana, according to 2017 a poll by Elon University.
Still, it will require electing lawmakers who support the issue for medical marijuana to be legalized, Alexander said. That could start to happen with this year's election cycle, Alexander said.