SALT LAKE CITY — Parents of epileptic children hugged and cried Friday after a House committee voted 8-2 to recommend a bill that would allow cannabis extract in Utah for seizure treatment.
HB105 would legalize possession and use of hemp oil extract, non-intoxicating cannabis oil taken from marijuana plants, to help children and individuals suffering from seizures.
Nearly 100,000 Utahns suffer from epilepsy, and about 33,000 have seizures that are difficult to control, according to the Epilepsy Association of Utah.
The bill would allow Utahns to receive a waiver from the Utah Department of Health, provided they meet certain requirements — including a doctor's recommendation that hemp extract would help treat the person.
“I feel like it's a safe — hemp oil. They can't get high off it. It's not smoke. It’s not something that, at this time, has been shown to have any harmful side effects, and I'll take that over the medication that I already know,” said Lehi resident Barbara Kohler, whose 10-year-old son, Peyton, has Dravet syndrome.
Kohler said she's ready to try the hemp oil because the prescriptions Peyton takes don't fully work and have severe side effects.
Bill sponsor Rep. Gage Froerer, R-Huntsville, said small studies have shown the extract can reduce the amount of seizures epileptic children experience daily — in some cases from 100 seizures a day down to zero.
Multiple parents shared stories of their epileptic children and the help hemp oil could provide. They pleaded for the legalization of cannabis treatment for their children.
"I'm here representing a lot of people today, and I think I can speak for all of them when I say every one of the parents in here wants what Matt and Paige Figi have. They want their children to have the quality of life that Charlotte has received after this treatment," said Annette Maughan, president of the Epilepsy Association of Utah and mother of 11-year-old Glen, who has between one and 20 tonic-clonic seizures a day.
Maughan was referring to Charlotte Figi, the 5-year-old Colorado girl who has Gervais syndrome and received hemp extract treatment. She used to have 300 seizures a week.
"Charlotte, after taking the first dose, one dose of this oil, went seizure-free for a week. … She has a quality of life her parents were told she would never achieve," Maughan told the House Law Enforcement and Criminal Justice Committee.
Committee members said they have concern for the children and want to help, but they also want to be cautious about unintended consequences.
The bill has a constitutional note attached, which Froerer said will no longer apply now that the Farm Bill has passed. He said the Farm Bill eliminated the requirement that hemp come only from the stalk. Now if it’s 0.3 percent or less in tetrahydrocannabinol, or THC, it’s considered industrial hemp.
The Utah Medical Association opposes the bill on grounds that there are not enough clinical trials and scientific evidence to go ahead and legalize the use of hemp in Utah.
Rep. Dana Layton, R-Orem, said safety isn't the main concern with the legislation because the children already aren't safe.
"Long term is not in the cards for a lot of these kids, and to deny them a short-term possible solution or treatment because of some philosophical objection about what could happen in the long term when these kids' life expectancies are not long to start with, I think, would be wrong," Layton said.
Reasons for the two no votes centered on concerns over the broadness of the group that would be considered for access and on the qualification of the Legislature to make a tough medical decision.
The allowance for "compassionate use" and possession should be narrowed to those with seizures that are refractory, or difficult to control, said Rep. Edward Redd, R-Logan.
Froerer said he would be willing to narrow the language in the bill to deal with epileptic-type seizures specifically.
"We had one intent when we started this process, which was to give the families opportunity to use this extract. … Anything short of having them have the opportunity to obtain and legally bring this extract back into the state of Utah doesn't work," Froerer said.
He said the 80 percent vote of the committee is a good sign, noting the bill won't even need that high of a percentage to pass the on the House floor.