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SALT LAKE CITY — Ashley Rice is a card-carrying member of the Utah Department of Health's Hemp Registry.
The membership entitles her family to drive to a neighboring state where medical marijuana is legal and purchase rather expensive cannabidiol treatment for her seizures.
"It's not cheap to be raising a disabled child in the first place," said Doug Rice, Ashley's father.
He spends $40 a year to renew the card, which was originally $400 to obtain. And the oil, which contains the non-psycoactive marijuana ingredient cannabis, or CBD, costs about $275 for 100 milliliters.
Many people likely forego the card and use the drug illegally in Utah. An ongoing state-sponsored study shows that just 47 percent of patients on the registry renew their card year after year.
Rich Oborn, with the department's Office of Vital Records and Statistics, told members of Utah's Health and Human Services Interim Committee on Wednesday that 166 patients have signed up on the registry since it became available in July 2014.
The Hemp Extract Registration Act, HB105, that created the registry was approved by lawmakers earlier that year.
The committee heard an update on the program and the accompanying research being done by the pediatric neurology department at the University of Utah. Still in the early stages, results from the study aren't expected until 2018.
Rice recalls being one of the first to obtain legal permission from the state to purchase the marijuana extract for his daughter. Knowing it might help her, he didn't dare use it prior to getting on the registry because he didn't want to lose his job as a firefighter/paramedic.
And with three daily doses of Charlotte's Web, purchased from a manufacturer in Colorado, Ashley has gone from having up to two dozen seizures on a bad day to an average of about three to eight of the debilitating moments each day.
It turns out the CBD oil is a much better alternative to the also expensive but prescription Valium-like drug that her father says "left her like a zombie." And the seizure recovery times are shorter, too.
"Then she's back to being the same kid," Rice said. "She actually has a life and a great personality that you didn't see because it was so obtund, so masked by the Valium stuff."
Rice isn't pushing for recreational access of marijuana in Utah but said, medicinally, it makes sense. He's certain that the local study being done will exemplify that.
So far, doctors who have prescribed it and patients who have used cannabidiol have reported few side effects or allergic reactions, but cite expense as a definite obstacle. Some also report that it has no effect on their disease, Oborn said. But many are benefitting, and the study will likely show that.
"She experiences no high with this," Rice said of his daughter's CBD use. "There is no detrimental effect on anything. The only side effect is that my skinny little child has put on a little weight."
The West Jordan family has recently discovered on various trips to Colorado that upping the amount of tetrahydrocannabinol, or THC, that Ashley gets helps further lessen the frequency of seizures, even resulting in total control. But they can only use those forms of treatment while in Colorado.
"As soon as we leave, I'm a criminal again," Rice said.
Ashley's epilepsy accompanies her initial diagnosis of Angelman syndrome, a complex genetic disorder that compromises her nervous system. At 24 years old, she functions more on a 3-year-old level, her dad said. And she's a joy to be around.
"As a parent who only wants the best for my kid, it's frustrating to know there's this treatment out there that is being withheld from us," he said.
The family has considered moving, Rice said, but they love being in Utah and morally feel like they're backing an important movement here.
Sen. Evan Vickers, R-Cedar City, chairman of the committee, said there will be bills addressing medical marijuana coming forward in the upcoming session of the Legislature, along with public hearings. The issue was one of four the committee voted on Wednesday that "is significant, but more time is needed to develop solutions and consensus," Vickers said.
"I'm doing this for my kid," said Rice, who is also the vice president of the Epilepsy Association of Utah and is active on Capitol Hill. "I don't think there's a better reason than that."