SALT LAKE CITY – Utah made history last year when lawmakers passed “Charlee’s Law”, which allows Utahns to possess an extract from marijuana plants that has shown promise in treating children who suffer from various forms of epilepsy.
The law has been in effect for seven months now, and several Utah families want access to the cannabidiol oil, also known as CBD. The issue is that the oil is in short supply, and even for families that can find it: Bringing it back to Utah is still against federal law.
"These are families and children that had tried numerous other drugs and really were at the end of their medical rope,” said Rep. Gage Froerer, R-District 8.
Froerer sponsored “Charlee’s Law”, which is named for a West Jordan girl named Charlee Nelson. Charlee passed away at the age of six on the same day the law bearing her name came forward for final approval.
"She knew at that point and time she was doing something very valuable for the kids in the state, and not only the state of Utah--but the United States,” Froerer said.
The legislature passed the bill, allowing families to secure a permit from the Utah Department of Health and take that permit out-of-state to a producer of CBD. About 50 families have such permits, but they still face obstacles as it is against federal law to move the substances across state lines.
Jennifer and Cameron May’s son, Stockton, has Dravet Syndrome, which is a particularly troubling form of epilepsy. Jennifer spoke about their situation.
“I need to make it really clear that the families in Utah that are, anyone using these artisan oils brought in from other states--they're violating federal law,” she said.
May founded Hope for Children with Epilepsy to advocate for cannabis based treatments, and her group is working to change the federal law that puts marijuana and hemp in the same classification as cocaine and heroin. That classification is part of the reason federal law prohibits bringing CBD oil across state lines.
"We need to change that because it's not fair or right, it's confusing, it's a very sort of muddy topic,” May said.
The Stanley brothers in Colorado are growing the special strain of cannabis the CBD is derived from, but a combination of limits on how much can be grown and about a thousand families who want to try CBD means the waiting list is long.
In Colorado CBD is sold through a non-profit group called Realm of Caring. The strain of marijuana plant used to derive the oil is called Charlotte’s Web, and it is named for another young patient with epilepsy.
Heather Jackson, executive director of Realm of Caring, helped bring the product to Utah.
"It is really life-giving to the families, because these are kids and adults who, they don't have any other options, and they're literally running out of time,” she said. “So to see politicians do the right thing is just incredibly exciting."
Not everyone can uproot and move to Colorado, so Jackson's group will reintroduce a bill this year to change the federal law.
"There would be one of two things that could happen: Either there would be distribution in Utah, or we would be able to ship directly to Utah, so either one of those things takes care of the access issue there,” she said.
The Cromars couldn’t wait, so they left their family and friends in Farmington to move to Colorado to seek CBD treatments for their son, Holden. When they arrived, they learned they were at the bottom of a long waiting list.
FOX 13 News spoke with the family last year about their decision to move, and we recently caught up with the Cromars--who have subsequently gotten access to CBD and say it is helping.
"We know we didn't have time to wait for FDA approvals for a drug to be made, similar to Charlotte's Web, and we also didn't have time to wait for change,” said David Cromar of their decision to move.
Mandi Cromar said moving has been hard for their family, but she said it is something they are doing for their son. They said they were initially mad when they learned they had moved but still had to wait for CBD, but now after living in Colorado for a little more than a year Holden is taking CBD. Prior to taking CBD, they were able to get access to a similar compound, THC-A.
“When we moved here, Holden was having between 6 and 800, just over 800 seizures a month,” David Cromar said. “And once we had that combination of THC-A along with a little bit of CBD, he's now between 4 and 600, on average a month."
The family said they are still working Holden up to a full therapeutic dose of CBD.
“It’s gross,” Holden Cromar says of the substance. But his dad says it is helping.
“We've had really good days, and he's doing really great in school because of it,” David Cromar said.
Before moving to Colorado and getting treatments, Holden wasn’t doing as well academically.
"We were really scared,” Mandi Cromar said. “He didn't know how to spell his name, didn't know any colors, didn't know shapes, didn’t know anything. With his seizures, he would forget who Mom and Dad were sometimes."
But, things have changed.
"He's done like a complete 180, and I mean he still has seizures but his quality of life is way better,” Mandi Cromar said.
His parents say he is doing better in school and they said his life has improved.
"He's doing so much better, and I don't get phone calls from the school every day, 'We don't know what to do with your child you need to come get him,’” Mandi Cromar said. “I sit there and wait by the phone but I never get anything and when I go pick him up it's, 'He did great ' or 'He had a little seizure but we were able to work through with him.'"
David was also enthusiastic about the improvements.
He said: "I think for most people that have a second grader, they'd be like 'big deal.' For Holden, that's a major breakthrough and a big deal. It's amazing, and that type of progression has been since we started cannabis oils."
The Cromars said they are glad they moved to Colorado. They said Holden, who is nearly 8, has been having seizures since he was 2. They said they have seen him improve since the move.
"What we've seen is almost like a fog lifting in his mind, and every day we see more and more clarity,” David Cromar said.
While CBD has been working wonders for Holden and hundreds of others, about 25 percent of those who have tried it have not had a positive effect. But, with every seizure bringing the potential for death: Groups like Realm of Caring and Hope for Children with Epilepsy are working at a frantic pace to make it available to as many patients as possible.