Terisa Sitton attended hearings, wrote letters and was among those exchanging tearful, congratulatory hugs when lawmakers passed "Charlee’s Law," which grants seizure-stricken Utahns like herself trial use of a nonintoxicating, therapeutic cannabis oil.
But the Lehi teen may not benefit from the law when it takes effect July 1. Her neurologist isn’t recommending her for the oil because he doubts it will help her type of epilepsy — removing her last hope of avoiding brain surgery, said her mom, Cheryl Sitton.
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.
"I cried. Terisa cried. Her reaction was, ‘We went through this for nothing,’ " said Cheryl Sitton. "I gently reminded her there was always the possibility that it might not work for her, and that our [legislative] work was not just for us, but for others also."
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?’ "Next Page >
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