Family friend Jennifer Lewis cares for Alexis Carey (left) during Wednesday's hearing.
Clare Carey did on Wednesday what she said she shouldn’t have to do.
“We should be in the park," the Boise mother of
three told Boise Weekly in January
. "We shouldn’t have to be dragging our sick kids to the Capitol so they can get their medicine."
Carey’s daughter, Alexis, 10, and a handful of sick children sat before Idaho lawmakers March 4 as they pondered whether the state should allow patients the right to access medical cannabis oil to treat epileptic conditions.
A "yes" vote would create an exemption for cannabis oil in state marijuana regulations and allow the children to try a medication that may control the seizures that threaten their lives. That wasn't (exactly) what they got.
The Senate State Affairs Committee unanimously sent Senate Bill 1106
to the amending order, which could keep the measure known as Alexis’ Law afloat with some caveats.
Dozens of parents filled the nearly packed Lincoln Auditorium to tell lawmakers that they don’t have much time to wait. Any seizure could be their child’s last, some told lawmakers.
“I feel like I am living on borrowed time and I don’t have time mess around [and] wait,” testified Natalie Stevens, who's 11-year-old daughter, Marley, suffers from a seizure disorder.
Rexburg Republican Sen. Brent Hill closed the nearly 2-hour-long hearing by calling for the bill—which has the backing of the Epilepsy Foundation of Idaho—to move forward with amendments addressing the concerns of law enforcement and prosecutors centered on how the state would regulate cannabidiol (CBD) oil. He challenged stakeholders to come back with an amended version of the bill, sponsored by Boise Republican Sen. Curt McKenzie, by next week.
“I don’t want to wait until next session or 10 years,” Hill said.
The Careys have waited nearly Alexis’ entire life for relief from seizures that stem from Dravet Syndrome—a life-threatening epileptic disorder that can stall development and leave children unable to walk and talk.
“I’ll never forget that moment that our eyes first met. It’s an image burned into my memory," Carey told lawmakers of her daughter’s birth. "I had no idea how much she would change my life, how much she would teach me about love, courage and a relentless determination."
Nearly three months later, Alexis suffered her first seizure.
“It’s a moment I’ll also never forget,” Carey added.
Lawmakers sat in silence as Carey played a video of her then-infant daughter in the throes of a seizure.
The video showed the first-time mom consoling her daughter, stroking her head, fighting tears and whispering, “Come on, little girl. Come on, little girl.”
Carey told legislators that Alexis’ last hope rides on their decision to allow her daughter to try CBD oil, a non-psychoactive derivative of cannabis with less than 0.3 percent THC that has shown success in controlling the seizures of children with Dravet Syndrome—but not in Idaho, where any form of cannabis is strictly illegal.
“Families I know in our small community have been able to access CBD oil for their children," Carey said. "Many children have had a positive response. Some have had reduced seizures and in some cases are seizure free. Many families have moved out of state or in some cases divided their families across the country with one parent moving with their child to access CBD oil.”
Families testified that moving was not an option for them. Mothers and fathers told lawmakers how much they love Idaho, how much they love their children and how hard they’ve worked to find a conventional pharmaceutical or medical therapy that works. Many conventional medicines they said come at a high price—one child’s medicines cost $30,000 in Medicaid dollars per year, one parent said. Toxicity, liver damage and cognitive digression are among the prices children pay for taking FDA-approved drugs that offer little or no benefits, parents told lawmakers.
Tiny wheelchairs sat parked at the auditorium’s entrance and in the room’s aisles while children’s voices occasionally hummed and babbled between testimony that alternated between parents and caregivers pleading and sometimes begging for passage of the legislation and government and law enforcement officials asking lawmakers to pause before moving forward.
Still, not a single lawmaker or opponent of the measure voiced opposition to the bill's intent. The dissent came in the form questions about how police would figure out who has legal access to cannabis, what would happen if a drug sniffing dog detected CBD oil and how to keep the oil out of the hands of people unauthorized to possess the herbal supplement.
“We believe it is the most liberal CBD bill in the country. There are no regulations, there are no safeguards…” Canyon County Prosecuting Attorney Bryan Taylor told lawmakers, echoing the sentiments of police chiefs, the Idaho Office of Drug Policy and prosecutors that represented the bulk of the dissenting testimony.
Twelve states have CBD oil exemptions on the books and 24 states currently allow for the use of medical marijuana.
Majority Leader Bart Davis challenged opponent after opponent of the bill with a variation of the same question: “How would you write the legislation?”
Taylor suggested amendments that could include stricter oversights and regulations that more narrowly define who could access CBD oil. He suggested requiring a physician’s recommendation, patient registration and product labels among the amendments.
“I think the general feeling is to try and see how we can help,” Meridian Republican Sen. Chuck Winder told Boise Weekly
. But he said he shared many of the same dissenting concerns voiced by law enforcement and prosecutors that centered on how the cannabis supplement would be regulated.
“I’m hopeful that sometime in the next week or 10 days we can have a bill that has some consensus with law enforcement and the drug policy people that would provide a way to help this small group of kids that really need it,” Winder said.
It’s a move that Carey hopes can end Alexis’ wait.
“I hope they can come up with some amendments that are reasonable,” Carey said, stressing that CBD oil remains a supplement that’s no different than fish oil or melatonin. The emphasis comes in response to dissenting concerns that CBD oil isn’t FDA approved or subjected to the rigorous scientific studies required for the approval of pharmaceuticals.
“It’s a supplement. A supplement,” Carey said.
“We just want to know that if we try this, we won’t be prosecuted,” Carey said.