UTAH: Jennifer May has tried 25 treatments in 10 years, a mix of prescribed diets and drugs, to quiet the lightning in her son’s brain. Only two eased Stockton May’s seizures. But their toxic side effects ravaged his bones and immune system, and the relief was temporary.
His rare and intractable form of epilepsy, Dravet syndrome, “always found a way around the treatment,” said his mom, a self-described conservative and devout Mormon who is now pursuing what for her was once unthinkable: medical marijuana.
Use of marijuana is outlawed in Utah. But mounting evidence of its medicinal benefits — from controlling cancer pain and nausea to reducing seizures — has pushed 18 states to legalize it for medical use.
Moved by preliminary studies and patient testimonials, May is now fighting for legislation to make it available to Utahns, including children with epilepsy.
“It’s not just anecdotal. It’s huge,” she said. “We’re talking about a group of kids for whom no other options are left.”
She has the backing of the Epilepsy Association of Utah and a Facebook group of 25 to 30 like-minded moms.
“This is not smoking the drug, or getting high off it,” she said, stressing she seeks only to legalize medical-grade products derived from the cannabis plant, and only for certain patients where science warrants it.
Utah’s Republican legislative leaders have opposed any attempts to decriminalize marijuana, including pro-tem Senate President Curtis Bramble, R-Provo.
“If someone comes forward with credible research, I’ll listen; I’ll listen intently,” he said Tuesday. “I’m not persuaded at this point.”
But former Utah Attorney General Mark Shurtleff, a cancer survivor, has said he’d testify in favor of the drug’s medical use.
Under current Utah law, possession of less than an ounce of marijuana can lead to a sentence of six months in jail and a $1,000 fine. The sale of any amount can result in a five-year sentence and a $5,000 fine.
“It may be a long shot in Utah,” concedes Connor Boyack, president of a new Utah-based libertarian policy group, theLibertas Institute. “But if anything is going to crack the prohibitionist nut in Utah, it’s going to be children who are suffering. We think it’s a powerful argument to make and a principled one.”
May believes it’s possible to build a well-regulated program for producing chemical extracts and oils that are tested for safety and potency.
Such therapies are being produced now by groups that include the Colorado nonprofit Realm of Caring. But there’s a waiting list for the drug and traveling with it across state lines is illegal, not to mention impractical for kids as sick as Stockton.
A drug company, GW Pharmaceuticals, is running investigational trials on a drug that, like Realm of Caring’s product, is made from a strain that is high in cannabidiol (CBD) but does not appear to have the psychoactive effects of tetrahydrocannabinol (THC), another chemical component of marijuana.
May has submitted Stockton for possible participation in trials, though it would likely entail relocating to another state. Stockton could be among those who get the placebo, and it could take a decade or more for the drug to win federal approval.
She initially thought CBD was just another false lead. “We’ve had so many people approach us about all kinds of crazy treatments, from positioning Stockton’s crib a certain way to having him wear a magnet in his pocket, supplements and cold laser therapy,” she said.