A grass-roots group of Utahns persuaded lawmakers to remove some of the legal obstacles to families importing cannabis from states where medical marijuana is grown and sold but now they must win over neurologists.
Several parents whose children fit the definition of "intractable epilepsy" in Charlee's Law have been discouraged from seeking permission to try cannabis oil, according to Jennifer May, a co-founder of Hope 4 Children With Epilepsy.
"We have some doctors who are really on board, some that are iffy," she said, "and some who are saying your child had better be close to death before we'll even consider it."
May tells parents it's too early to be alarmed, believing doctors' misgivings will erode with time and education.
To inform patients and providers of their treatment options, both mainstream and alternative, the Epilepsy Association of Utah is sponsoring a "Get Seizure Smart" conference June 7 in downtown Salt Lake City.
Ian Miller, a pediatric neurologist at Miami Children's Hospital and an expert on Dravet syndrome, a type of epilepsy that has been shown in observational studies to respond to cannabis, is the keynote speaker.
Experts will be on hand to explain the ins and outs of the law, including representatives from the Realm of Caring Foundation, a Colorado Springs nonprofit and the leading provider of a cannabis extract high in cannabidiol (CBD) and low enough in tetrahydrocannabinol (THC) the chemical in marijuana that gives users a high to meet the definition of "hemp" under Charlee's Law.
But cannabis presents significant legal and ethical challenges for physicians.
Doctors in Utah can't legally prescribe it. They can only recommend it and only to patients with epilepsy that has not responded to "three or more treatment options."
Even then, they could face liability.
To obtain marijuana, patients will have to import it from countries or states where it's legal. And, technically, transporting it across state lines violates interstate commerce laws at least until Congress or the courts resolve conflicting federal laws.
Primary Children's Hospital and the University of Utah have sought legal advice and are still deciding how to handle doctor recommendations, said Bonnie Midget, a spokeswoman at Primary.
The draft rules for applying to the Utah Department of Health for a "Hemp Extract Registration Card" give neurologists sole discretion.
"They really want to do what's right by the patients. They are committed to meeting the criteria of the law and want their patients to have the best treatment and care available," Midget said. "They're just being careful. It's not just a matter of reputation, but a matter of integrity."
CBD oils have been shown in observational studies to have strong anti-seizure properties.
But the oil doesn't work for all patients, and there are questions about its long-term safety.
Figuring out which patients are candidates for the oil is complicated by the absence of peer-reviewed research.
"That's part of what they're trying to work out with the recommendation letter," Midget said. "What is it that you would recommend for the child? Would you recommend it or say, 'I don't see any harm in trying it?' "
Part of the impetus for passing Charlee's Law was to collect data for use by researchers seeking to study CBD oil.
Primary Children's is focusing instead on running an investigational trial of pharmaceutical-grade cannabis made by the British drugmaker GW Pharmaceuticals.
The hospital is awaiting approval of the trial by its Institutional Review Board and the Drug Enforcement Administration, Midget said.
Families who live with intractable epilepsy are accustomed to uncertainty and experimentation. Even a high-fat "ketogenic" diet used "for ages" by many patients with some success is controversial, May said. "To this day, there are doctors who will not recommend it."
May said most doctors "will agree my son Stockton should try" cannabis. Stockton has Dravet syndrome and seizes up to 40 times a day.
"But we have other kids in our group who function fairly normally in life, so physicians look at them and say it's too risky to try this on them. Let's try all these other things first," she said. "There are dozens of medications they can try. The requirement is that they try three."
Terisa Sitton, now 17, takes three medicines, but still has several seizures a day, said Cheryl Sitton, who acknowledges that cannabis may work no better.
"Her neurologist said that in his review of the cases that have been successful, he feared she would be among the ones where it's not working, where there's too much atrophy or scar tissue on the brain," she said. "My thought is what would it hurt to try?"
The family may seek a second opinion, but went ahead and scheduled Terisa for surgery in August to remove the portion of her brain where her seizures originate.
"Right now, she's willing to do the surgery," Cheryl Sitton said. "In eight months, she might change her mind again."
The surgery doesn't come with any guarantees, either. Doctors could discover during the procedure that they can't safely remove the offending brain tissue without impairing her speech, she said. "We're just kind of sitting in there in that cloudy zone."
Get Seizure Smart
Emerging cannabis oil therapies are the focus of a Saturday, June 7, conference sponsored by the Epilepsy Association of Utah. The "Get Seizure Smart" conference will be held from 8 a.m. to 4 p.m. at Little America Hotel, 500 S. Main St., Salt Lake City.
Registration is open to the public, including individuals with epilepsy and their families, medical personnel and first responders. The cost for the conference is $30 for the public; an additional $10 charge will apply for those registering at the door.
For more information, visit: http://epilepsyut.org/conference2014.html.