Campaign Continues To Make Cannabis Extract Process Easier For Families
Utah parents whose children suffer from debilitating epileptic seizures have learned to stay guarded when it comes to potential medical treatments, but many have found a renewed optimism in the past month with the legalization of a promising cannabis oil. The Utah Legislature approved the measure earlier this year, supporting parents who have found hope in the medication. An extract of the marijuana plant, cannabidiol oil (called CBD) has been shown to help reduce seizures by as much as 90 percent in past studies.
The plants used to produce the oil are grown specifically to contain high concentrations of the CBD, but low concentrations of THC, the psychoactive compound which causes the “high” users get from marijuana. “This isn’t just your next treatment that has a slight, tiny chance of helping. It’s a huge help for families,” said Jennifer May, whose 12-year-old son, Stockton, was diagnosed with a rare form of epilepsy, Dravet syndrome, and has suffered from seizures since he was 6 months old.
Stockton has between five and 40 convulsive seizures every day. Some last only 15 seconds or so. Others may last for 45 minutes and require emergency medical care, May said. One in five children with Stockton’s condition doesn’t reach age 18. His sleep is heavily disrupted, and currently he is eating from a feeding tube — a result of anorexia brought on by one of the more than two dozen medications the family has tried to improve his quality of life. Most of those medications are sold with doctors expecting about a 5 percent chance of success, May said.
That’s why May helped start a group, Hope 4 Children with Epilepsy, and started advocating for the new cannabis-based medication, which has been dubbed Alepsia. State lawmakers took up the cause during their Legislative session earlier this year, and Sen. Steve Urquhart, R-St. George, sponsored “Charlee’s Law,” named after 6-year-old Charlee Nelson of West Jordan, who died after an extended battle with seizures caused by an intractable form of epilepsy just two days after the measure passed.
The law requires parents to pay a $400 fee and provide proper medical evidence that their child has intractable epilepsy and that the oil might help, but they are left on their own to try and obtain it, a step complicated by the fact that possession and transportation of the substance still is illegal at the federal level. Pennsylvania Republican U.S. Rep. Scott Perry introduced last week federal legislation that would legalize the drug nationally. The “Charlotte’s Web Medical Hemp Act” would remove cannabidiol oil and therapeutic hemp from the federal definition of marijuana in the Controlled Substances Act. But until such a bill makes its slow course through the machinations of Congress, Utah families who can’t afford to wait face an assortment of hurdles in obtaining the drug, despite its legal status.
A nonprofit group based in Colorado Springs called Realm of Caring, has a license to grow the plants under Colorado’s medical marijuana law, but the plants are not yet ready for the oils to be extracted, and parents may not see any of the oil until late fall. Whether the drugs are shipped to families in Utah or the families make the trip to Colorado, the transportation would technically be illegal, although the U.S. Drug Enforcement Administration has indicated agents would not go after anyone following the state law.
May said many are hopeful about a drug trial proposed at Primary Children’s Hospital in Salt Lake City, in which 25 patients could participate and receive Epidiolex, a purified form of cannabidiol. About 45 members of the 60-or-so families who have joined Hope 4 Children with Epilepsy have applied for the trial. Those who don’t get in will try Realm of Caring or other options, with the hope that the entire process could eventually be moved to Utah, May said, noting that Utah State University has a research license that could conceivably be used to grow the plants in-state.
Urquhart has proposed distributing the oils through Utah liquor stores, an option that would eliminate potential problems attached to federal law enforcement over transportation or issuance through federally-regulated pharmacies. That could be a difficult sell for some parents in heavily-Church of Jesus Christ of Latter-day Saints Utah, though, and would do little to move CBD away from its association with marijuana, but May said she thinks it could solve a lot of problems. “We’re not fans of going to the liquor store to pick up medicine for our kids, but if the benefits are there, it’s worth it,” she said.
There are an estimated 100,000 Utahns with epilepsy, including some 10,000 children who experience recurrent seizures, according to the Epilepsy Association of Utah. For those parents who watch their children suffer through the seizures, sometimes literally hundreds of times in a single day, there is an overwhelming desperation, said Linda Johnson, a St. George resident who lost her son William to epilepsy in 2004.
“That’s the hardest thing, especially at first, if there’s nothing you can do,” she said. “You’d do whatever it took to make it stop, go to any length, but you can’t. You just can’t, and it hurts.” To have the prospect of a drug that can help, wherever that drug comes from or how it’s made, would be powerful, Johnson said. “I can’t see how something that does that kind of good can be something bad,” she said.
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Author: David DeMille
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Website: Campaign continues to make cannabis extract process easier for families