Epileptic Children Find Friends in NC House

A bill allowing the use of hemp oil for children with severe seizures makes its way through the General Assembly’s House of Representatives.

By Jasmin Singh

Stephen Carlin said he was overjoyed when the North Carolina House of Representatives applauded and congratulated families waiting for the legalization of hemp oil for their children suffering from epilepsy.

“It’s awesome,” said Carlin, the father of a 5-year-old who has intractable seizures. “Thank God they saw that this is truly medicine.”

Zora Carlin gets an electroencephalogram (EEG) at UNC Hospital. Photo courtesy Steve Carlin

After sitting for several weeks without action, the Hope 4 Haley and Friends bill moved quickly through two committees. The bill legalizes the use of hemp oil only for people who have severe seizures that have been unresponsive to other medications.

The bill would allow for the administration and use of hemp oil for those with intractable seizure disorders, like Carlin’s daughter, Zora, who has Dravet syndrome, a rare genetic form of intractable epilepsy.

The bill easily cleared two more votes on the House floor Thursday.

“We’ve all been around when the lights go out in the house and the lights come back on, and that’s what happens when a patient has a seizure,” said Rep. Jim Fulghum (R-Raleigh), a neurosurgeon and a bill sponsor during the debate on the House floor. “It’s an electrical storm.”

Fulghum said children with epilepsy disorders are more prone to electrical instability in the brain.

“They don’t get to develop motor skills,” he said. “Each seizure that they have makes the next one worse.”

Carlin said Zora has as many as 60 seizures a day. There is no cure for the disease.

“She’s failed 14 medicines; we’re out of medicines to try. We’ve tried diet; we’ve tried everything,” he said. “The medicines that she has been on have completely torn her apart.”

FDA-approved trials

Hemp oil is has a high level of cannabidiol, or CBD, a substance found in both hemp and marijuana, but very low levels of tetrahydrocannabinol, THC, the substance that makes marijuana users “high.” Hemp oil is available in Colorado, the only state that has legalized recreational use of marijuana and marijuana products, but hard to find legally elsewhere.

A drug company in the United Kingdom, GW Pharmaceuticals, is producing Epidiolex, a pharmaceutical-grade drug with action similar to hemp oil. The FDA recently granted the use of Epidiolex in clinical trials.

Rep. Pat McElraft (R-Emerald Isle), the bill’s primary sponsor, said Wake Forest University is participating in those trials and that invitations have also been extended to UNC Hospitals and Duke University Hospital.

“We are very excited that we have that opportunity for our medical universities,” she said.

The bill requires patients to receive the medication only from participating medical institutions, which could make access difficult for those who don’t live near them.

Rep. Marilyn Avila (R-Raleigh), another bill sponsor, said the universities

might consider sending neurologists out into surrounding communities to register patients for the trials and provide them with the medication.

Support from an unlikely place

Many conservative representatives raised their voices in support of the bill, which calls for a $50 registration fee, paid to the state Department of Health and Human Services, allowing families using the hemp oil to be protected from criminal action.

“That $50 is a life-changer for those families,” said Rep. Becky Carney (D-Charlotte), another sponsor of the bill. “Here’s an opportunity of a non-addictive way for these families to get their children the help that they need.”

Rep. Chris Malone (R-Wake Forest) said it is his duty to children with epilepsy to support the bill.

“I’m epileptic,” Malone said. “I wanted to do all the things that everyone [else] was able to do but you couldn’t do it.

Steve Carlin holding his daughter Zora, along with his daughter Eva and wife Dawn. — Steve Carlin holding his daughter Zora, sitting along with his daughter Eva, 11, and wife Dawn. Photo courtesy Steve Carlin

“It’s a wonderful thing that we’re doing here. It’s the right thing to do.”

Rep. Larry Pittman (R-Concord) said that though he is against recreational drug use, like marijuana, he understands the need to use hemp oil.

“All I know is that these children need help,” he said. “As hardheaded conservative as I am, I’m all for it. So if I can support it, I don’t know why anybody here would not.”

Carlin said that he too is a conservative, but sees this more as an issue of education.

“If somebody votes no, it’s because they did not listen to what’s going on here,” he said. “If you educate yourself about this, it’s a no brainer.”

Not marijuana

Bill sponsors made it clear to the General Assembly that hemp oil is not akin to marijuana.

Avila said it was the media’s fault that people confuse the two.

“It’s that small percentage of THC that is in the wrong dosage,” she said, “the hallucinogenic that many of us know as a scourge on Earth, with our drug problems in the United States.”

Avila argued that the bill is limited to a specific, well-recognized medical condition studied under the care and supervision of trained professionals. She also said that the proposed medication would be manufactured in a pharmaceutical-grade laboratory, making it different from medical marijuana.

“Medical marijuana is just out there,” Avila said. “You can go in and say you have chronic pain. You can’t take a picture of it; you can’t run a test to identify it. But under those laws, you could get a doctor to write you a prescription.”

Carlin said that though he is “ecstatic,” he knows he has a big hurdle to cross in the Senate.

“I’m praying to God that the Senate will see the light of day and realize that this is medicine,” he said. “This is not a pathway to legalizing marijuana. This is the medicine we are looking for.”