Clare Carey can’t count the number of times she’s been at the Statehouse during her two-year battle to pave a legal pathway for her daughter, Alexis, to try a last ditch effort to control irretractable seizures. It’s a fight for her daughter’s life and Carey’s determination come closer to opening the door for the use of cannabidiol oil on March 24 with the Senate passage of what’s now known as Alexis’ Law.
Carey heard the 22-12 vote in the Senate gallery with her parents, who flew in from England and her children by her side.
“All they know is that it’s taking so long,” the Boise mother of three said of her young children’s analysis of the legislative process.
But they do know that if Alexis’ Law passes, all of their lives could change. Carey told Boise Weekly in January
how not only Alexis suffers the devastating effects of Dravet Syndrome, which brings on life threatening seizures and left her in a coma last year. Carey spoke of summers the family spends sequestered inside their home to avoid the heat that could trigger one of Alexis’ seizures, the times her children, ages five to 10, missed swimming at Lucky Peak State Park and the vacations that her oldest son, Calvin, age eight, is never quite sure he’s going to take. Plans suddenly get canceled and hospital stays can quickly consume the schedules of families who battle seizures.
“My heart was in my throat, just counting off votes,” Carey said of the roll call for SB 1146aa that tallied the yays and nays on the measure that would give epilepsy patients and their families a definitive defense if they face prosecution for possessing non-psychoactive CBD oil with a THC content of .3 percent . The bill could also impact hundreds of families in Idaho.
“It was a very tense moment,” Carey said.
The vote that drew only Republican dissent sent the measure to the House and a swell of gratitude through the Carey family.
“I just want to say, ‘thank you so much,’ to the people that opened their hearts to this,” Carey said.
The Senate debate centered heavily on compassion with proponents calling on their colleagues to put themselves in the shoes of the Carey’s and others like them. Emotions swelled from lawmakers who recounted their families’ own battles with epilepsy.
“It’s all about the emotion and compassion. That’s all that’s driving us. We can’t wait for five or seven years before we address this issues,” an emotional Terreton Republican Sen. Jeff Siddoway told the Senate.
The dissent came from lawmakers who said that they were sympathetic of the plight of the children who could benefit from the oil that’s halted seizures for some patients. But they said that they didn’t want to usurp federal law, bypass FDA regulation, open the door for criminals to take advantage of new CBD oil laws or muddle police efforts.
“Law enforcement couldn’t support the bill because they were sworn to uphold the constitution,” Boise Republican Chuck Winder said.
“It’s my opinion that there’s another way forward and this is not the way forward,” he said.
That other way forward came with the subsequent and unanimous passage of SB 1156 which funds extended trial studies of Epidiolex, a manufactured CBD derivative. It’s a plan Carey backs but she has noted that the double blind study can only accommodate a limited number of patients and half of those patients would receive a placebo. Desperate patients and families can fall through the studies’ gaps, unable to access the herbal supplement that’s legal in 12 states and a border crossing away.
Carey said that the CBD oil supplement SB 1146aa covers is specifically bred to produce a low THC, high CBD content that’s shown efficacy in treating seizure disorders. She knows it won’t work for everyone, but she said it offers an option for patients that are out of options.
“Medicine is an art and a science,” Carey said. “When you allow doctors to have as many tools in their tool kit, they are able to practice the art and science of medicine.”
As Carey listened to debate in the gallery, she wished she had more time to work on the law that she said can’t get passed fast enough.
“It’s an education issue,” she said noting that lawmakers that once resisted the idea of legislation that would pave the way for the use of medical cannabis easily changed their minds after hearing her story and learning about the life-changing hope of CBD oil.
“After just a half hour conversation (with lawmakers), it was clear that families in my situation should have access to CBD oil,” Carey said.