Charlee’s Law passes, Charlee Nelson dies at age 6
Bill allowing hemp oil use for seizure treatment passes Senate
SALT LAKE CITY — Utahns with epilepsy are on the home stretch for being allowed to use non-intoxicating hemp oil extract from marijuana plants to treat seizures.
After a unanimous vote Tuesday in the Senate, HB105 now goes back to the House for consideration. The bill has been revised since passing the House by a 62-11 vote last week. If the House concurs with the changes, the bill will be sent to the governor for his signature.
Six-year-old Charlee Nelson, who has Batten disease, lay in a stroller on the Senate floor with her parents, Catrina and Jeff Nelson, of West Jordan, as the senators cast their votes.
While it’s probably too late to help Charlee, HB105 would allow the 33,000 individuals in Utah with intractable epilepsy — meaning seizure treatment is unsuccessful — to bring the hemp oil across the state border.
“The concept of having cannabis oil as a medication to help with the treatment of seizures and other health issues is one that I support,” Gov. Gary Herbert told reporters Tuesday, noting he has not read the bill.
Herbert said the state should be responsible for “necessary oversight” and that he has no opposition to the bill if that’s in place.
Using cannabis oil, he said, has to be “in the context of a controlled substance.”
“There ought to be some kind of prescription,” the governor said. “We ought to make sure the quality of what is being distributed … (has) a positive benefit.”
The bill requires the oil to be high in cannabidiol, or CBD, and very low in tetrahydrocannabinol, or TCH, the psychoactive component in marijuana.
Sen. Stephen Urquhart, R-St. George, the bill’s Senate sponsor, said Utah already has products with THC higher than 0.3 percent on store shelves. He said if the product were available in other countries, it could be imported to Utah. However, it’s illegal to take the hemp oil across state lines.
The product is currently available in Colorado. Of the 180 children from 42 states now living in Colorado and using the hemp extract, 80 percent have seen at least a 50 percent reduction in their seizures, Urquhart said.
Children with epilepsy or their parents would apply for an annual registration card to have hemp extract in the state.
“This is our opportunity to truly empower parents so we don’t criminalize them for something that anyone in their right mind would do, which is fight for their children’s life,” said Sen. Luz Robles, D-Salt Lake City.
HB105 would allow those with waivers to bring the extract to Utah, provided it goes through quality control in a laboratory separate from the hemp oil producer.
The bill provides for a transfer of information between physicians and the health department for study to determine efficacy during the two-year period the legislation would be in effect.
“The process works,” Urquhart said of the multiple revisions the bill has undergone to gain support in the House and Senate. “The parents have been extremely engaged. They’ve never gotten discouraged. … I think, at all stages, the bill kept improving to where it’s going to be a great law.”
Contributing: Lisa Riley Roche
By Madeleine Brown,
Published: Tuesday, March 11 2014 7:40 p.m. MDT
Updated: Wednesday, March 12 2014 10:37 a.m. MDT
Contributing: Lisa Riley Roche
Days after Charlee’s Law passes, Charlee Nelson dies at age 6
One of 50 Utah children on a waiting list for nonintoxicating cannabis oil, 6-year-old Charlee Nelson, of West Jordan, died early Saturday. Just Thursday, the Utah Legislature passed a law, named in her honor, to improve the quality of life of children with seizures.
Diagnosed with Batten disease, Charlee’s first seizure was in May 2011, and as her condition worsened she would sometimes have hundreds in a 24-hour period. She stopped eating in February. On March 4, she came home from the hospital to spend her final days in the care of her parents, Jeff and Catrina.
“We appreciated the family sharing Charlee on her last days with myself and the state of Utah,” says Rep. Gage Froerer, sponsor of HB105, adding that her name will live on as the bill helps other children with seizure-inducing conditions.
“Charlee’s Law” passed the House and Senate by wide margins and is expected to be signed by Gov. Gary Herbert. The bill would allow those with intractable epilepsy to first acquire written permission from a neurologist and then apply for a waiver to import cannabis oil.
Charlee’s father, Jeff Nelson, believes his daughter “held on” for the legislation to pass.
More than a week ago, she was near death’s door but when invited late last week to the House and Senate floors for final passage of HB105, she rose to the occasion, Nelson said. “She was in good enough shape to be there and be present. In the House when all the representatives stood up and gave her a round of applause, she perked up like she knew it was for her.”
Froerer said some representatives “really broke down” when they saw Charlee brought to the floor in a wheelchair.
Cannabis oil wouldn’t have cured Charlee, but it might have calmed her seizures and prolonged her life.
Jeff and his wife, Catrina, say they are grateful for the Legislature’s courage and compassion and the community’s support.
“We feel more than honored to have her name attached to this law for what it will mean for parents like us who are so desperate for seizure control,” said Jeff Nelson. “It’s a way of remembering Charlee, to let her name live on. ”
By Matthew Piper
| The Salt Lake Tribune
First Published Mar 15 2014 03:18 pm • Last Updated Mar 16 2014 12:16 pm