SALT LAKE CITY — Utah has issued its first registration cards Tuesday morning under a limited medical marijuana program allowing those with severe epilepsy to possess a low-potency extract.
The extract, called cannabidiol, doesn't have the psychoactive properties that get users high and is believed by some to reduce severe seizures.
It can only be obtained from other states, as the program approved earlier this year by Republican Gov. Gary Herbert does not allow distribution of medical marijuana in Utah.
The program, which expires in 2016, is restricted to those with severe epilepsy for whom the regular treatments are not effective, and it requires a neurologist's consent to obtain and use the extract.
Annette Maughan of Cedar Hills said she was "thrilled beyond belief" after receiving a card for her 11-year-old son, Glenn, who has a form of epilepsy that causes him to have seizures about every 90 seconds that range from major to minor, barely detectable seizures.
If the cannabidiol could allow her son to have even 72 hours without a seizure, "that's a huge, huge thing for him," she said.
"I'm not looking for him to hang glide or race sports cars. Heck, if he'd even potty train, that's OK with me," she said. "As long as he can get back to enjoying what he used to enjoy when he was 3, that's really everything for me."
Janice Houston, the state registrar and director of the Utah Department of Health's records office, said Maughan was one of a handful who received cards Tuesday, while more applicants are expected later in the week and year.
The main producer of the extract, based in Colorado, has a waiting list with thousands of names and doesn't expect to have more supply until fall.
Because the cards are only good for a year, advocates and the Utah Department of Health expect many people will wait until later this year to apply.
"When I've talked with several families, there are several that just want to go ahead and get it as soon as possible," said Jennifer May with the Utah group Hope 4 Children with Epilepsy, which lobbied for the law. "My guess is that we'll have several by the end of the week that are getting theirs."
The cards require a $400 annual fee. The cost is high because the program has startup costs and only about 100 families are expected to participate, Houston said.
Receiving a state-issued registration card will be just one step in an expensive and knotty legal process for Utah residents to actually obtain the extract. Doctors and advocacy groups have also warned there's no proof yet that the extract is effective at treating epilepsy or even safe.
But families members said it's worth the time and cost if it can bring a better quality of life to those suffering from severe seizures.
The extract comes from a strain of marijuana called Charlotte's Web, named after the first child treated with it. The plant is low in THC, the hallucinogenic chemical in marijuana, and high in CBD, a chemical that may fight seizures.
The cost of the cannabidiol varies, depending on the size of the patient and the level of the dose they're receiving. For a 100-pound person, a month's supply of a beginning dose is about $40. A maximum dose for that same patient could cost up to $900 a month.
Beyond the sets of state regulations, all state medical marijuana laws are still illegal under federal law.
May's group said families know they'll be breaking federal law when they trek to Colorado to retrieve the extract every few months. But they also note there are contradictions in federal law about growing, importing and shipping hemp products.
Some families may have already traveled to Colorado or sought out alternative sources for the oil, but May said the 50-plus families in her group have been waiting for Utah's program to make it legal.
"Our children are in the hospital a lot," said May, whose 12-year-old son can suffer hundreds of seizures a day. "To be in the ER with your child seizing and not be able to tell the doctors what you're giving them is really dangerous."
May said she's not sure if she'll seek a card for her son yet. They first hope to secure one of 25 spots in a pending drug trial by neurologists at Primary Children's Hospital in Salt Lake City.
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