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SALT LAKE CITY — Utah law now allows people to use hemp oil extract under very specific conditions. Dozens of Utah parents are still waiting for a chance to use hemp oil to treat Dravet syndrome, a damaging form of epilepsy.
Some days, it's a struggle for 20-year-old Amelia Glenn to do even the simplest things, said her mother Karen Glenn. But Amelia Glenn is fighting even as prescriptions meant to treat her seizures work against her in other ways, making her sluggish and sick.
"It's been hard to watch the toll that it's taken on her, physically and mentally,” Karen Glenn said.
The new law makes it legal for Amelia Glenn's parents to use the hemp oil extract to treat her seizures, if they can get it. The plant is bred to be low in intoxicating tetrahydrocannibal but rich in calming cannabidiol. There are other developments.
Primary Children's Hospital announced last week it would have limited trials of a drug called Expidiolex, another epilepsy medication which has cannabis as its main ingredient.
“That's what makes Expidiolex so different," said Dr. Ed Clark, department chair of pediatrics at PCH, in a press conference. "It is a specific pharmaceutical compound that is characterized as any other legitimate medicine that is prescribed in the United States.”
The Glenns are on the waiting list for Expidiolex and the hemp oil. The challenges for the hemp oil include getting multiple doctors to sign off for it and figuring out a way to legally bring the oil in from Colorado. The Marijuana Tax Act of 1937 makes it federally illegal to transport any form of cannabis, including hemp oil.
“We do see hurdles still. We know we've got to get with our neurologist on board and the health department to get through, so that's still yet to happen," said Amelia's father, Jerry Glenn.
"We know there's some risk in the sense that there's not a lot of studies done on this medication," Karen Glenn said, "but it's really clear what the impact of the Dravet is.”
The Glenns said they realize there are many more battles to come, but they're willing to keep taking them on to help Amelia.
