A bill to make it possible for the families of children with epilepsy to get an experimental hemp extract is near final passage in the General Assembly.
By Jasmin Singh
Tears fell from Sherena Ward’s eyes as a Senate committee pushed North Carolina one step closer to the legalization of hemp oil for her daughter who has a disorder that can cause her to have dozens of seizures a day.
“It’s a very happy day,” Ward said. “It’s been a long time coming.”
Ward’s 6-year-old daughter, Haley, has a rare genetic disorder, CDK L5, which causes difficulty in controlling seizures and severe neuro-developmental impairments.
The Hope 4 Haley and Friends bill moved quickly through two House committees last week and easily passed the full House. This week, the bill passed the Rules and Operations of the Senate Committee in an emotional meeting.
The bill legalizes the use of hemp oil only for people who have severe seizures and have been unresponsive to other medications, and would allow for the administration of hemp oil for children like Haley and Steve Carlin’s 5-year-old daughter, Zora.
“I’m on my knees here today; I’m begging you,” Carlin said. “I’m begging you to save our children.”
With the approval of the bill imminent, North Carolina’s legislators appear to be answering Carlin’s plea.
But even with state sanction, many questions remain about how parents will get their hands on hemp oil for their children. And although hemp oil appears to be a promising option for treatment of epilepsy, the research on how it works and whether it works consistently are up in the air.
What is hemp oil?
During the committee meeting, Rep. Pat McElraft (R-Emerald Isle) floundered as she attempted to answer questions from her colleagues about how hemp oil works.
“You could drink the entire bottle of this and never get high,” she said. “So there is no way that this is going to become something a drug person wants.”
It turns out McElraft is not alone in her befuddlement, as researchers are still unsure exactly how hemp oil reduces seizures in these children with genetic disorders.
Duke University pharmacology researcher Cynthia Kuhn noted that currently there’s not a lot of scientific data and plenty of anecdote.
Hemp oil has a high level of cannabidiol, CBD, a substance found in both hemp and marijuana, but very low levels of tetrahydrocannabinol, THC, the substance that makes marijuana users “high.”
Clinical trials modestly support the effectiveness in CBD in some childhood epilepsy, meaning that the design of the trial was not ideal and the product being used isn’t exactly what the bill is pushing for.
Early studies have indicated that CBD reduces seizure frequency and raises the threshold at which a brain starts to have a seizure, making it harder for someone to have a seizure. Researchers suggest it could be used to treat otherwise untreated seizures, like Zora and Haley’s.
Wake Forest University was selected to participate in an FDA-approved clinical trial for Epidiolex, a pharmaceutical-grade drug in a form that would be sprayed into the mouth or nose with action similar to hemp oil. Duke University Hospital and UNC Hospitals were also given invitations to participate. The bill would also allow East Carolina University researchers to participate in the trials.
Kuhn said that at this point, researchers don’t really know how hemp oil works.
“It is not very active at the receptor that THC, the compound in marijuana plant that gets you high, works on, so we really don’t know,” she wrote in response to emailed questions. “People think it will stop seizures by acting in the brain to stop the repeated firing of neurons that causes seizure.”
Kuhn and other researchers in the field say the next essential step is a systematic investigation of CBD and its role in treating epilepsy in children and adults. She said that she is “enthusiastic” about upcoming clinical trials, but also sounded a note of caution.
“Parents are understandably desperate to help their children, but we don’t know what these drugs do. There is no other drug we would give to patients, especially children, without testing it first,” she wrote.
“[I’m] not at all enthusiastic about letting parents treat their children with untested drugs of unknown purity.”
Parents see results
Ward said she has seen hemp oil work.
“I do believe that hope is paying off,” she said. “There is always hope.”
Bea Vanevery’s granddaughter Mattie Gorman is currently in Colorado Springs and is “taking the oil successfully.”
“She’s been on the oil since Dec. 19 and she’s had an 80 percent reduction of seizures,” Vanevery said.
Sherena Ward said she would love to see Haley derive some benefit from the hemp oil.
“I would love to see her get her appetite back and be able to eat and swallow hard stuff and actually eat a meal,” she said. “I would like to be able to take her to the beach without having to worry.”
Ward said she is more scared of pharmaceuticals than hemp oil because not only have they not worked but they also leave children with severe side effects.
“We’re trying the same thing over and over and over again expecting a different result,” she said. “We’re insane to keep trying these drugs.”
Across state lines
The bill would not allow hemp oil to be dispensed by a physician or a pharmacist from North Carolina.
Shelly DeAdder, a legislative research division staffer, said the bill only legalizes the use and possession of hemp oil. The families advocating for the bill are asking to use hemp oil extracted from Charlotte’s Web, a strain of medical marijuana found in Colorado.
“They will have to bring it in from Colorado or somewhere else where it is being produced,” DeAdder said. “It is not produced in the state.”
McElraft said families could receive this strain of hemp oil through the Realm of Caring, a nonprofit organization in Colorado. However, there is already a waiting list and people who request it must prove Colorado residency to obtain the oil.
Some strains of hemp oil are being made in North Carolina, however, its quality is unknown and is chemically different from the plant strain in Colorado.
Research staffer Barbara Riley said the recent farm bill could improve access within the state.
“There was approval to allow state universities to begin to grow hemp for research purposes,” she said.
Moving in the fast lane
Since its introduction on May 27, the bill has navigated the legislative process at lightning speed. The Senate is expected to vote on it on Thursday.
Carlin said the key was educating legislators.
“Once you’ve taken a look at it, and actually get the education on it, I knew it would be perceived well,” he said.
Sen. Tom Apodaca (R-Hendersonville) sympathized with the families and said his son had a seizure 20 years ago.
“If I can do anything to help any parent not experience that nightmare and what these folks have to go through every week, then we’re going to do it,” he said.
Carlin said he can’t wait to see Zora move forward and begin to develop.
“She’s going to start speaking words that people can understand,” he said. “She’s going to stop having seizures as much as she has at times.
“It could mean the world to her. It could change her whole future.”