We are committed to working with our families and with the children who would be affected by House Bill 105, and we are there for the journey with them. —Dr. Edward Clark
SALT LAKE CITY — Even though the governor has signed a bill allowing Utahns to obtain hemp oil extract for seizure treatment, the rollout is going to take some time.
HB105 allows people to apply for a registration card if they are diagnosed with intractable epilepsy, meaning they haven't responded to the standard treatments.
A patient must also have a signed statement from a board-certified neurologist stating hemp extract could be beneficial. Waiver applicants must pay a to-be-determined fee by the state health department, likely $400.
Now that the bill is law, the next steps are to inform neurologists and patients about the program and how to go about obtaining the hemp oil, which is an olive oil infusion.
Other goals are centered on research, including an investigational new drug program for Epidiolex, which is similar to hemp oil, according to Jennifer May, co-founder of Hope 4 Children With Epilepsy.
University of Utah Health Care officials say they hope to begin enrollment, expected to be 25 people, within the next several months, pending approval from the U.S. Food and Drug Administration and Drug Enforcement Administration.
"We are committed to working with our families and with the children who would be affected by House Bill 105, and we are there for the journey with them," said Dr. Edward Clark, a pediatrician and chairman of the University of Utah Department of Pediatrics and chief medical officer at Primary Children’s Hospital.
Clark said medical practitioners are somewhat "stymied" right now, waiting for rules to be implemented, but they are proactively working to prepare for what's coming. He noted the program is coming together quickly because of the energy behind the issue.
Currently there is a waiting list 3,500 people long for an extract called Alepsia, extracted from a strain of cannabis called Charlotte's Web. It's produced and dispensed by the nonprofit Realm of Caring Foundation in Colorado Springs, Colo.
May said there's a shortage of Alepsia because it's produced through Colorado's medical marijuana program, which has a limited plant count. Realm of Caring has applied for a hemp grower's license so it can grow Charlotte's Web by the acre and sell unlimited quantities.
The hemp grower's license would not only increase supply but also eradicate some of the hoops people have to jump through — specifically one parent establishing Utah residency for a waiver and the other parent establishing Colorado residency for the medical marijuana program.
May said Realm of Caring expects to help those on the waiting list with its spring and fall harvest.
"Really, by fall, there should be plenty of options for everyone," she said.
Hemp and marijuana come from various strains of the plant called cannabis sativa, according to Dr. Thomas Martin, medical director of the Utah Poison Control Center. Hemp is the name for industrial and commercial use of the seed and stalk — clothing, food, plastics, paper, fuel and body care products.
"There's absolutely no abuse potential to this (hemp oil)," Dr. Francis Filloux, chief of the division of pediatric neurology, said during a November interview with University of Utah Health Sciences Radio.
Filloux said the hemp oil has nothing to do with marijuana, but the scientific objection is that there are limited data available for how it interferes with epileptic seizures and what side effects it may have.
Hemp usually contains between 0.3 percent and 1.5 percent tetrahydrocannabinols, which isn’t enough to produce any psychological effects. Marijuana usually contains 5 percent to 10 percent or more THC — the intoxicating ingredients that produce a high.
HB105 states hemp oil used for seizure treatment must contain no more than 0.3 percent THC and at least 15 percent cannabidiol.
This requirement follows the definition of industrial hemp, as signed into law by the president in February. The Agricultural Act of 2014, also known as the Farm Bill, will be in effect through the 2018 crop year.
The act also authorizes state agriculture departments and universities in states — including Utah under HB105 — where industrial hemp is an approved crop to cultivate hemp for research.
The governor officially signed the bill last week with the family of Charlee Nelson, the 6-year-old for whom the legislation was named while she was still alive. “Charlee’s Law" was signed the day before her memorial services Friday.
On Tuesday, it was signed ceremonially just a day ahead of an epilepsy awareness day, Gov. Gary Herbert noted. The bill will be in effect for two years, starting in July, and neurologists must submit patient records to the health department for research purposes.
“Mostly we’re really excited just about the possibilities of using cannabis in a scientific way through research to treat children with epilepsy and people of all ages with epilepsy and ultimately with other disorders with a product that is not a harm to our community and doesn’t cause a high and is not smoked,” May said. “It’s safe, and it holds a lot of potential for kids like ours.”
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