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Utah likely will extend its first experiment with medical marijuana, the Hemp Extract Registration Act, which advocates said Wednesday is making a big difference in the lives of children with epilepsy.
The Legislature's Health and Human Services Interim Committee on Wednesday voted unanimously to extend for five more years the act, which allows patients with intractable epilepsy access to therapeutic cannabis. The full Legislature likely will follow suit during the upcoming session, predicted Rep. Gage Froerer, R-Huntsville, the 2014 act's chief sponsor.
Otherwise, the act also known as Charlee's Law is due to expire next July 1.
At present, 113 patients have cards issued by the Utah Department of Health, allowing those patients or their parents to buy cannabidiol (CBD) oil, which is believed to reduce seizures. CBD is extracted from cannabis, or marijuana.
Sixty-four percent of the cards have been issued to children. Another 25 Utah children are part of clinical trial of Epidiolex, a drug containing CBD, at Primary Children's Hospital and the University of Utah.
Two advocates and mothers of sons with epilepsy, Annette Maughan and Jennifer May, pressed for the act's extension, citing scientific studies, surveys of affected Utah families and personal anecdotes.
Maughan said her 11-year-old son's seizures have dropped by 50 percent and his cognitive function is much better after 18 months on Epidiolex, the drug in clinical trials at Primary Children's and sites across the country.
Children who are part of the trial do not get the hemp extract cards.
"It's good to have him back, and I have this legislative body to thank," said Maughan, president and chief executive of the Epilepsy Association of Utah. "So, thank you for giving me back my son."
May said her 13-year-old son's seizures decreased only about 10 percent, but said Epidiolex has reduced his migraines and his post-seizure vomiting remarkably.
"We'll not ever go off this oil," she said.
May is on the association board, and the two co-founded Hope 4 Children with Epilepsy, which pushed for passage of Charlee's Law two years ago.
On Wednesday, Maughan and May said that not only is medical research affirming the benefits, but the parents of Utah's epileptic children also are believers.
A phone survey of 35 families found that 86 percent say taking high-CBD hemp oil has benefited their children enough to continue.
That survey and an online survey of 42 families found that for 57 percent of children, seizures have dropped by at least 50 percent, May said.
The hemp registration cards have to be renewed each year, and only 13 of the 34 that expired at the end of October were renewed.
That prompted Rep. Norm Thurston, R-Provo, to ask why. "If it's so great, why are only 13 people renewing?" he asked.
May said after the meeting that it's because many of those who got hemp cards early on did not know they would be accepted into the Epidiolex clinical trial instead.
Only patients with intractable epilepsy are allowed the CBD treatment. A neurologist has to sign off.
Utah parents typically buy the oil from CW Botanicals in Colorado, the company that makes the high-CBD oil known as Charlotte's Web. Children take the oil by mouth, by dropper, in capsules or in food.
Froerer said he'll propose one more change to Charlee's Law: The oil should be 5 percent CBD, not 15 percent, as the law is now written, he said. That lower concentration is better for the manufacturer and for patients, he said.
The law was named for Charlee Nelson, a 6-year-old West Jordan girl who appeared with her parents during legislative debate in 2014. She died days after that appearance.
Her mother, Catrina Nelson, attended the hearing Wednesday to support advocates pushing for the act's extension.