Within the next few years, three Charlottesville families will be able to legally obtain the cannabis oil extract that eases the seizures of their children with debilitating intractable epilepsy, thanks to unanimous approval in the General Assembly in February, passing even the usually marijuana-averse House of Delegates 99-0.
Good news, right? Yet none of those families will speak on the record with C-VILLE Weekly. The reason? Marijuana is still illegal, and they fear that could bring repercussions for those who have a federal security clearance or ties to law enforcement or professional licensing, according to one of the parents.
“Nothing we do changes federal law,” says Delegate Rob Bell, who chairs the criminal law subcommittee.
Some, like Fairfax resident Beth Collins, moved to Colorado in 2013 to be able to legally obtain cannabidiol oil, aka CBD, when doctor-prescribed pharmaceuticals couldn’t control the seizures her daughter, Jennifer, was experiencing, and their side effects were making her suicidal, in a rage and violent, says Collins.
THC-A, another non-psychoactive cannabis extract, lessened Jennifer’s seizures and “stopped her grand mal seizures entirely,” says Collins. But they missed the family they left behind, and after a year returned to Virginia.
Jennifer wrote a letter to members of the General Assembly. “Within 10 minutes we heard from Senator [Dave] Marsden,” says Collins. “He said, ‘This is ridiculous.’”
In 2015, the General Assembly passed an affirmative defense law, which offered a small protection for those who had a certificate issued by a practitioner stating that the oil was to treat intractable epilepsy.
So while parents were less likely to be busted by the state, they still had no legal way to obtain the oil. “The parents said that doesn’t help us get it,” says Bell.
The latest bill allows the Board of Pharmacy to issue permits to processors to manufacture and provide the oil in approved facilities, but that doesn’t mean families will be able to get it from their nearest CVS anytime soon.
It’s still illegal for a doctor to write a prescription, and the narrow law only applies to intractable epilepsy, not Crohn’s disease or cancer or any of the other health conditions advocates claim medical marijuana aids.
A bill that included those conditions moved from Bell’s criminal law subcommittee to the Joint Commission on Health Care because members felt it required medical expertise, he says. “We felt this wasn’t our strong point.”
“That’s phenomenal,” says Jes Vegas, chapter leader of Jefferson Area NORML. “I am very overjoyed. It was a watershed this year.”
That the General Assembly made a baby step toward medical marijuana, Collins believes, was the result of parent-led lobbying to educate legislators one at a time. “They were so against it at first,” she says. “The fact we had a unanimous vote speaks to how far we’ve come.”
Bell agrees. “For complicated issues, it helps to have more than 15 minutes before the bill is heard. We wanted medical evidence and stories.”
Legislators like Bell learned how profoundly the kids with intractable epilepsy were affected—and how the cannabis oil helped. Jennifer Collins, now 17, testified before the committee. “She was visibly different,” says Bell. “She testified how debilitating it was when she was 15, 16.”
Some of intractable patients’ parents are also lobbying Congress, and met with Representative Tom Garrett last week. Garrett introduced a bill February 27 to federally decriminalize marijuana and remove it from the list of controlled substances, where it’s been categorized a Schedule I drug along with heroin and LSD—drugs deemed to have no medicinal value.
Richmond resident Nicole Miller’s daughter’s rare epilepsy is called Dravet syndrome. “[Sophia] has been having uncontrollable seizures since she was 8 months old,” says Miller. Despite being on four medications, Sophia had life-threatening seizures every 10 to 14 days, says Miller.
When Sophia, now 6, began taking CBD oil in July 2015, she went three months without a seizure, says her mother. “It was life-changing,” says Miller.
Severe seizures can affect a child’s cognitive abilities. Sophia “can say the alphabet, she can add,” says Miller. “The quality of life she has is phenomenal.”
The parents C-VILLE spoke with were circumspect about how they obtain CBD oil, and are concerned about its quality. And there’s the cost. “It’s just so expensive,” says Miller—$275 a month for that one medication.
One of the Charlottesville parents spoke to C-VILLE only on the condition no identifying information was used. Collins finds that fear of publicity understandable. “I think it’s the fact we’re all committing crimes to give our children medicine,” she says.
Before using cannabidiol oil, the local mother described her child as “doped up on a lot of medications that weren’t controlling the seizures,” and that have side effects.
“It’s definitely been better,” she says. And while her child has not been seizure-free, she has seen a significant improvement in them. “Every seizure has different aspects and carries risk of injury and death,” she says.
Collins hopes she and other parents have educated legislators enough to be open to how marijuana can help other conditions. “This is not a legislative decision,” she says. “It should be one made by doctors.”
Asks Vegas, “How long should children suffer?”