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More than half of the Utah children with epilepsy who are trying an experimental marijuana extract are having significantly fewer seizures, a University of Utah pediatrics expert told lawmakers Wednesday.
The U., working with Primary Children's Hospital, is one of 11 sites approved by the Food and Drug Administration (FDA) and the Drug Enforcement Administration (DEA) to test Epidiolex — a purified form of cannabidiol, or CBD. CBD comes from marijuana plants, but it is not the chemical that gives users a high.
The Utah Legislature earlier gave the go-ahead for the trial. It also created a registry so that families of the estimated 1,500 children with intractable epilepsy in Utah can legally import hemp extracts. As of June, 84 cards had been issued by the Department of Health. No other patients can qualify for the cards.
Ed Clark, head of pediatrics at the U., was testifying at the most in-depth legislative hearing yet on medical marijuana. He was joined by three adults suffering from various ailments that could be eased by cannabis, as well as the father of a 4-year-old girl with Dravet syndrome, a particularly serious form of epilepsy. The girl has had fewer seizures since she began using a hemp extract shipped in from Colorado, he said.
The Health and Human Services Interim Committee also got a preview of how contentious the issue will be as it considers a bill being drafted for next session by Sen. Mark Madsen, R-Saratoga Springs, which would allow broader use of medical marijuana in Utah. Sen. Evan Vickers, R-Cedar City, co-chairman of the committee, announced Wednesday that he and Rep. Brad Daw, R-Orem, also plan a more modest proposal for an expansion.
Kevin Sabet of the national organization Smart Approaches to Marijuana gave a lengthy presentation urging Utah to back away from medical marijuana and instead wait for Congress to pass a compassionate-use law.
Connor Boyack of Utah's Libertas Institute, a proponent of medical marijuana, accused Sabet of smearing medical marijuana proponents and spreading "inaccurate propaganda."
That prompted Sabet to say he'd never been so disrespected. He also suggested the committee consider that major medical associations also urge caution, although he endorsed the idea of medical-grade CBD and the research underway at the U.
Clark, from the U., noted that researchers are still crunching the data from the research underway at the U. and Primary Children's Hospital. That will take another six months.
"It is an encouraging study and it is the first step in a very long process," Clark said.
Whether — and when — the FDA will approve Epidiolex is unknown, he said.
The U. has spent $100,000 so far, and would like to expand it "tenfold" from the 25 patients now in the study. The university would need more money to do so, he said.
The first study involves giving 25 children daily doses of Epidiolex, with the parents reporting their responses for 12 weeks.
While more than half have had fewer seizures, some children have had minor side effects, such as sleeping problems or diarrhea, Clark said. At another study site, however, a child suffered liver failure, he said. "This is not a perfectly safe pharmaceutical," he said.
Among the Utah children, one did not have a single seizure during the 12 weeks of treatment, Clark said.
The U. also has begun a double-blind study involving the use of Epidiolex in three children with Dravet syndrome, and it plans a double-blind study for eight children with Lennox-Gastaut, another form of epilepsy. In a double-blind study, neither the patient nor the medical provider know which patient is getting the tested drug and which is getting a placebo.
Epidiolex is made by GW Pharmaceuticals, based in London.
The DEA had to sign off on the research project, and it has already audited the U. to ensure compliance with provisions of its agreement, Clark said.
Paul Hill of Washington City in southern Utah said his 4-year-old daughter, Sophie, did not qualify for the U. study because her seizures are less predictable.
Using a hemp product, though, has reduced her seizures' duration and frequency, he told the committee.
His 7-year-old son also might be a future candidate to use medical marijuana, Hill said.
The boy has just finished rounds of chemotherapy and radiation for rhabdomyosarcoma, but if the cancer returns, he could perhaps benefit, his father said.
The committee also heard from Jessica Gleim, 31, of Salt Lake City, who suffers from trigeminal neuralgia, which causes extreme facial pain; Amanda Ellis-Graham, 35, of Salt Lake City, who has multiple sclerosis; and Benjamin Flint, 30, of Layton, who has seizures and other neurological problems.
"I'm asking you to create a system … [for] all of us who suffer from chronic pain," Gleim said.
Ellis-Graham said she finally turned to marijuana two years ago and now has less vertigo and more energy. "My doctors are in awe," she said.
"I started going out more, I've stretched my gait 3 inches now," said Ellis-Graham. In this year's MS Walk, she was able to push her wheelchair for a mile instead of riding in it.
Madsen, whose medical marijuana bill, SB259, failed by one vote in the Senate last session, said the stories of suffering people convince him that Utah needs to legalize marijuana for medical uses.
"Do we really want policy that makes these individuals and many others like them criminals?" Madsen said. "We need to understand the human toll it takes when government takes away an option that may be better for people."
Twitter: @KristenMoulton