Utah families hoping to obtain therapeutic cannabis for their epileptic children got a warm reception Wednesday at the Legislature.
The discussions were preliminary. No bill has been drafted. But the tenor at two committee hearings Health and Human Services and Law Enforcement and Criminal Justice was largely positive and welcoming of the idea of allowing "hemp supplements" into the state, provided it can be done safely and legally, and that they contain only trace amounts of tetrahydrocannabinol (THC), the psychoactive compound in marijuana that gives users a high.
"I was all geared up to fight this medical-marijuana thing," said Sen. Allen Christensen, R-North Ogden, a dentist. But after reading up on the therapeutic value of extracts from plants cultivated to be high in cannabidiol (CBD) and low in THC, he said, "I'm ready to ask to be a Senate sponsor."
Said Rep. Edward Redd, R-Logan, an internist, "Treating seizures is extremely difficult and sometimes fraught with failure. If CBD helps and it's not particularly dangerous, it's something we ought to consider."
But there is no shortage of devilish details to be worked through.
"Are we just going to let anyone take it who wants to?" asked Redd. Will doctors prescribe it, and, if so, should it be specialists or primary care physicians? he added.
Rep. Michael Kennedy, R-Alpine, a family physician, wondered if doctors could be held liable for prescribing a substance that's technically federally illegal, especially if 10 or 15 years down the road it proves ineffective or harmful.
"Who controls the distribution and certifies that the substances are what they should be?" he asked.
Rep. Gage Froerer, R-Huntsville, has committed to carry a bill and promised it would be narrowly crafted.
"This is not about the elephant's nose in the tent. It's a very surgical procedure that will deal strictly with this type of product," said Froerer, the same lawmaker who years ago sponsored a ban on synthetic cannabis, or spice.
Observational studies and media accounts of CBD's seizure-controlling effects in children with treatment-resistant epilepsy have given rise to nationwide demand for the "herbal" supplement.
"Since I started exploring this, there's been six other states Pennsylvania, Oklahoma and Wyoming, to name three that are headed down the same path," Froerer said. "So the first thing is to create access."
Details are scant. But one idea batted around Wednesday would be to create a research space through which families obtain CBD oil from producers in Colorado. The research would give 35 waiting families access to the treatment while also producing data on its effectiveness and safety, said Froerer.
But researchers must have special, hard-to-obtain licenses to work with Schedule I controlled substances. So lawmakers may have to also consider carving out an exclusion under the law for cannabis products so low in THC that they meet agricultural standards for hemp.
Froerer is consulting state health and agricultural officials and local universities on possible quality-control schemes for testing imported products. The products would be available for purchase by patients of any age although, possibly with a doctor's recommendation, he said.
Medical marijuana is legal in 20 states, plus Washington, D.C., and Portland, Maine. But, in Utah, possessing even an ounce of cannabis can land you in jail. To obtain CBD, families living must move to states where it's available.
10,000 Utah kids have 'refractory' seizures
There are about 100,000 Utahns living with epilepsy. Of those, 33,000, including 10,000 kids, have "refractory," or difficult to control, seizures, according to the Utah Epilepsy Association of Utah.
About 35 are on a Colorado waiting list for a cannabis extract known in Utah as Alepsia.
"We see these children trapped in their own brains, seizure after seizure robbing them of their humanity," said Annette Maughan, association president and the mother of an 11-year-old boy with epilepsy.
Therapies provide temporary relief, but some patients quickly acclimate to the drugs, Maughan said, and "We lose them again."