Pubdate: Sat, 22 Mar 2014
Source: Salt Lake Tribune (UT)
Copyright: 2014 The Salt Lake Tribune
Author: Kirsten Stewart
Bookmark: (Cannabis - Medicinal)


Medical Marijuana) Utah Families With Children Who Suffer From 
Intractable Epilepsy Are Eager for Relief.

Utah Gov. Gary Herbert signed "Charlee's Law" on Thursday, giving 
Utahns with epilepsy trial access to a non-intoxicating, 
seizure-stopping cannabis oil.

The Republican signed HB105 in a private ceremony with the parents of 
the bill's namesake, Charlee Nelson, one of 50 Utah children on a 
Colorado waiting list for nonintoxicating cannabis oil. The 
6-year-old West Jordan girl, died last weekend, days after being 
honored by the Legislature.

Herbert will hold a "ceremonial" signing next Tuesday at the Capitol.

"Cannabis oils show promise of offering some relief to Utahns 
suffering from seizures and epilepsy and we should do all we can to 
help them," he said in a statement Friday. "My concern has been that 
the products are produced properly and that we have the adequate 
protections in place. Ultimately, I am satisfied the bill provides 
for that and I decided to sign it. "

Parents who pushed for Charlee's Law are relieved to have overcome 
this final legislative hurdle, but stress the bill doesn't take 
effect until July 1.

"We're still working through the details of how all this will work," 
said Jennifer May. co-founder of Hope 4 Children With Epilepsy (H4CE).

The Utah Department of Health has to create a process for families to 
apply for a waiver to use cannabis oil.

"We know for certain that the registration process, issuance of 
registration cards, and maintenance of the medical records will be 
housed in the Office of Vital Records and Statistics. We still have 
to write rules for the registration requirements, the physician 
statement form for the individual or the minor in their care, needed 
documentation of the registrant, etc.," said health department 
spokesman, Tom Hudachko.

Hospitals must also develop procedures for dispensing the written 
recommendations required from board-certified neurologists to apply 
for a waiver.

"If you call your neurologist today, the nurse probably won't know 
what to do or say," May said.

Then there's the matter of obtaining the oil, which must be certified 
by a lab to contain at least 15 percent cannabidiol (CBD), the 
chemical believed to have anti-seizure properties, and less than 0.3 
percent of tetrahydrocannabinol, or THC, the psychoactive chemical 
that gives marijuana users a high.

Oils purporting to be high in CBD can be purchased online, sometimes 
for thousands of dollars per vial. But May said the products aren't 
always "as advertised," and "part of our challenge will be to help 
educate" consumers.

Many H4CE parents are on a 3,500-person waiting list for a CBD oil 
produced by the Realm of Caring Foundation in Colorado Springs.

The Realm hopes to furnish oil to everyone on the list with the next 
harvest, said one of the foundation's owners, Joel Stanley.

"In anticipation and in good faith with the Utah moms who have been 
on our waiting list, we are ramping up our production and hope to 
have a crop ready before fall," Stanley said.

The Realm hopes to grow that crop under a hemp license, which would 
enable it to ship products to Utah. But some Utah families may come 
off the waiting list in the spring, and because that product was 
grown under the Realm's medical marijuana license, families may have 
to go to Colorado and import it themselves, Stanley said.

Additionally, they'll have to jump through all Colorado's hoops to 
obtain a medical marijuana card.

The formulation of the Realm's CBD oil - alternatively known as 
Charlotte's Web or Alepsia - hasn't changed, Stanley explained. But 
legal landscape is evolving rapidly.

The Realm also hopes to research its oil with doctors at the 
University of Utah.

"This bill is really about research and education," said Laura 
Warburton, a political consultant to the families.
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MAP posted-by: Jay Bergstrom