SALT LAKE CITY – Independence Day came early in Utah for children with epilepsy and the loved ones who suffer along with them. Passed during the 2014 general legislative session and signed into law by Gov. Gary Herbert in March, House Bill 105, also known as “Charlee’s Law” after 6-year-old Charlee Nelson who died of Batten disease just days after the bill passed the house and senate, went into effect Tuesday.
According to the bill, the new law “makes amendments to Utah Code related to hemp.”
The primary purpose of the bill, its chief sponsor, Rep. Gage Froerer, said, is to create a waiver that will allow persons diagnosed with intractable epilepsy to purchase and posses cannabis oil and carry it across state lines without being in violation of state laws.
Epileptic seizures that have not been successfully controlled by medications – generally two or more medications – are considered intractable, Froerer said.
Researchers in Colorado have developed a strain of cannabis oil, known as Charlotte’s Web, that has shown to be extremely effective in controlling seizures, Froerer said, and is often the last resort for children who have had no help from mainstream medications.
“What we have here is a very vulnerable population,” the bill’s senate sponsor, Sen. Steve Urquhart, said, “and here is a product that can help.”
Cannabis oil is an extract of the hemp plant just as marijuana is, but unlike its “trippy” cousin, cannabis oil is very low in tetrahydrocannabinol, the psychoactive component prevelant in marijuana. But, because it is still a hemp derivative, the Drug Enforcement Agency classifies cannabis oil as a drug and therefore illegal.
For Froerer and other supporters of the bill they see this as a states’ rights issue.
“Cannabis oil is an extract, not a drug,” Froerer said, “parents should have a choice.”
“It is 100 percent a states’ rights issue,” Urquhart said,”the DEA classifies it as a drug but we disagree and we think they should let parents and kids get access to it.”
The passing of the bill, for Urquhart, was seen as a huge success in how the legislative process is supposed to and can work. He said:
The process was interesting because I think it can be so easy for politicians to find exit ramps on the difficult issues and there were legitimate concerns raised but we said, ‘you do realize if these children can’t get access to a treatment that works, then they can end up mentally disabled with failing livers and kidneys?’ When they said they did understand, we just asked them to hang in with the conversation and everyone hung in there.
Politics aside, for Froerer and Urquhart, the bill is really about the concerns of children who suffer with epilepsy on a daily basis and their families.
“I have met with so many parents and their kids and it touched me,” Urquhart said of his involvement with the bill. “In the end, we are saving lives and we are hurting no one.”
Froerer said that it was the concerns of Utah parents, mothers particularly, who gave him the push to sponsor the bill in the first place.
Ellie Stark is a 12-year-old girl living in Washington County. At first glance, Ellie Stark appears to be a normal 12-year-old girl; but, because of the damaging effects of her seizures, she will never quite live a normal life.
Ellie Stark has difficulty with everyday tasks like dressing herself, understanding normal behaviors in public and she suffers from massive anxiety, her mother Codie Stark said. She will also never drive a car and will likely never live independent of a caregiver.
She had her first seizure when she was 3 and by the time Ellie Stark was 5 she was having seizures regularly. She has been on eight different seizure medications with dosages reaching as high as 1,250 milligrams and almost as many medications to deal with the side effects of the original medication, her mother said.
One medicine’s side effects made it impossible for Ellie’s body to regulate her own temperature, Codie Stark said, and she became extremely sensitive to the sun.
“She couldn’t sweat so it was hard to tell when she was too hot,” Codie Stark said, “we had to make sure she was always hydrated, it was scary because her kidneys could have failed.”
In addition to the medications, Ellie Stark has had multiple tests and has a Vagus Nerve Stimulator – a small device that is implanted under her skin near the collarbone with a wire lead that attaches to the Vagus nerve in the neck – all in hopes of understanding and controlling the seizures.
For Codie Stark, cannabis oil is an alternative they are willing to try for their daughter.
“Not much research has been done on the negative effects of cannabis oil,” Codie Stark, said, “but plenty of research has been done on the negative effects of drugs that have been approved, and we have seen them firsthand.”
Though the bill has gone into effect, there are still a few hurdles left. Utah Department of Health is currently drafting the waiver and patients will need a recommendation from a neurologist who has registered with the health department and who specializes in epilepsy.
“We are acting in good faith,” Urquhart said, “ we hope to have it ready as soon as possible – in weeks.”
The next crop of cannabis will be ready to harvest in the fall.
Editor’s notes – legislative process, Southern Utah legislators
Charlee’s Law first passed the House of Representatives on March 3 with a favorable vote 62-11, with two representatives absent or not voting. It then passed the Senate with amendments on March 11, 26-0, with 3 abstentions. Finally, the bill returned to the House for concurrence with the senate amendments, where it found final passage 58-9, with 8 not voting. The bill was signed into law by the governor on March 20, with an effective date of July 1.
From Southern Utah, Sens. Ralph Okerlund, David Hinkins, Steve Urquhart and Evan Vickers all voted for Charlee’s law. Reps. Michael Noel, Don Ipson, Brad Last, Jon Stanard and V. Lowry Snow voted for the bill in either or both the first and final House passage, while Rep. John Westwood voted against it.
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