SALT LAKE CITY — Annette Maughan looks forward to the day when her 11-year-old son, Glenn, who has a rare form of epilepsy, will be able to play hide-and-seek with his siblings like he did when he was 3.
It's a sight she hasn't seen in the better part of a decade. But Tuesday brought renewed hope, she said, of what may lie ahead for her son.
Maughan, who is president of the Epilepsy Association of Utah, and several other parents obtained a hemp extract registration card Tuesday at the Utah Department of Health, the first day the cards were offered.
The card allows for legal possession and use of hemp extract, a non-intoxicating cannabis oil taken from specially bred marijuana plants, for the treatment of epileptic seizures.
For Maughan, it's one step closer to getting her son back — at least how he was at 3 years old.
"This is probably the single biggest day of his life," she said. "This is huge for him. The hemp oil promise for him is life-changing."
HB105, which was signed into law in March, legalized the medicinal use of hemp extract in the state and allowed for analysis of the treatment at medical research institutions.
Bill sponsor Rep. Gage Froerer, R-Huntsville, said those who oppose the use of hemp extract in Utah do so mostly because they don't understand the product and how it is used.
"There's really three different levels: There's marijuana, medical marijuana, and then there's an extract, which is what this is," Froerer said. "It's very low in THC (tetrahydrocannabinol) and very high in CBD (cannabidiol), which means there's little or no psychoactive component to it. It has no value as a street drug or for anybody to purchase to get high."
Despite the substance's controversial context, the bill passed the same year it was drafted.
"At the end of the day, it was all about what we could do to help these kids," Froerer said.
Research to come
Medical research of hemp extract treatment will be conducted at the University of Utah and Primary Children's Hospital. Utah State University will also research the economic and agricultural feasibility of producing hemp in the state, according to Froerer.
In order to obtain a hemp card and use the extract, patients must have intractable epilepsy, which means they have failed to respond to at least three forms of treatment under the care of a neurologist.
The caregivers can then submit personal identification, proof of residency and an application to the Health Department for a hemp card, according to Janice Houston, state registrar and director of the Office of Vital Records and Statistics.
The application comes with a $400 fee to cover the cost of starting the program. Health Department officials estimated that about 100 families would apply for the card within the first two years, and the price could go down as additional applications follow, Houston said.
Hemp extract treatments have been largely successful in other states, according to Jennifer May, co-founder of Hope 4 Children With Epilepsy. About 80 percent of patients who responded to the treatment saw an average reduction in seizures of 50 percent, she said.
"What's exciting is this works on a different system of the body — the endocannabinoid system," May said. Mainstream medications sometimes prove ineffective because they typically target sodium channels in the body, which can be dysfunctional in children with epilepsy, she said.
May's 12-year-old son, Stockton, has epilepsy. Since his seizures began when he was 6 months old, Stockton has undergone 25 conventional treatments. Some medications have had "heavy-duty" side effects on Stockton, including bone deterioration and organ failure, May said.
May remains hopeful that hemp treatment will prove to be a safer and more effective alternative.
"This is something new and different, so we're excited to give it a shot," she said. "It's not going to be a miracle for everyone, but it's going to be for some."
Despite widespread excitement for the arrival of hemp cards, many parents are waiting to apply until they know their out-of-state vendors will be able to send them the product. By midafternoon Tuesday, only two cards had been sought and issued by the health department.
"A lot of the families that we've talked to, the vendors that they're working with are waiting for the crop to be harvested, which won't happen for a few weeks," Houston said.
Transporting hemp extract across state lines remains illegal under federal law. Having a hemp card does not protect Utahns from federal investigation, but it does exempt them from being prosecuted under state law, according to Houston.
Most Utah caregivers will have the extract shipped to them from vendors, May said.
Until the shipments begin, Maughan's son Glenn continues to endure a "full gambit" of seizures, Maughan said. Most are sudden muscle jerks. Some escalate into laughing fits. Others lead to periods of blank staring. Glenn's medical examinations indicate abnormal electrical discharges in his brain every 90 seconds.
Such episodes have caused a broken nose for Maughan three times.
It remains uncertain whether his condition will improve with hemp treatment. But the mere possibility of seeing her son laugh and play again is all the assurance Maughan needs to move forward.
"I'm not looking for him to hang glide or race sports cars. Heck if he wasn't even potty trained, that's OK with me," she said. "As long as he can get back to enjoying what he used to enjoy when he was 3, that's really everything for me."
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