BOISE, Idaho (AP) – Up to 25 Idaho children with persistent seizures will soon have access to an experimental drug derived from marijuana, but experts say far more children could benefit from the treatment.
An April executive order from Gov. Butch Otter is allowing the very limited use of the non-psychoactive drug. Otter signed the order after vetoing less-restrictive legislation that would have allowed the marijuana extract to be used in children with severe seizure disorders.
The Idaho program allows 25 children to use the extract, cannabidiol, or CBD oil. But estimates of the number of children who meet the requirements number as high as 1,500 or more, though experts say it’s hard to know for sure because the state doesn’t track the number of children with epilepsy.
Only Idaho children who have tried at least four different medications but still suffer at least four seizures a month are eligible.
Claire Carey, whose 10-year-old daughter Alexis has suffered seizures since she was two months old, called the process “frustrating.”
“They’re helping 25 children at most. . It just made me lose all hope. The only way we are going to get access in Idaho is with a federal bill,” she told The Spokesman-Review.
Idaho’s strict stand against any legal use of marijuana puts it alone among all of its neighbors. Utah and Wyoming recently allowed legalized the supervised use of cannabidiol, or CBD oil, to treat intractable epilepsy or seizure disorders.
Parents who filled legislative hearings this year described in heart-wrenching detail what it was like to see their young children wracked by seizures that even strong drugs, with multiple side-effects, couldn’t stop. Many said they’d heard of others who’d found relief for their kids through the use of CBD oil. One dad told lawmakers his daughter was having 200 seizures a day until he began treating her with the oil and her seizures stopped, and she was taken off all her other medications.
Otter, in his veto message on the CBD oil bill, wrote, “Of course I sympathize with the heartbreaking dilemma facing some families trying to cope with the debilitating impacts of disease.” But he said the bill raised too many questions for law enforcement and other officials.
The oil that will be used in the FDA-approved but closely limited Idaho program is Epidiolex, a cannabis-derived product developed by a British pharmaceutical firm. It’s currently in clinical trials in various locations around the United States; as part of that, the FDA allows a small number of patients to receive it outside the trials, so the child runs no risk of receiving a placebo instead of the real drug.
The state Department of Health and Welfare has contacted every neurologist in Idaho to alert them about the program and the possibility of enrolling their young patients, said state epidemiologist Dr. Christine Hahn.
“We believe the word is getting out,” she said.
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