Last night, the Controlled Substances Adivsory Committee met in a packed room full of Utah parents, legislators, activists, and media. Created just a few years ago by the legislature, this group exists “to serve as a consultative and advisory body to the Utah Legislature” regarding the classification of “controlled substances”—a legal term for banned drugs.
Rep. Froerer has committed to sponsor legislation to facilitate the legalization of this medicine, and was present at the meeting to introduce the subject. Also present were a few individuals from the Realm of Caring—the Colorado-based non-profit organization that produces the strain of cannabis that is high in CBD (the beneficial component) and extremely low in THC (the psychoactive component). They provided anecdotal stories, medical reports, and clinical analysis of their medicinal product for the committee’s review.
Jennifer May, whose story we shared in August, offered the perspective of a parent who needs this medicine for her child. Joined by many other parents of children who suffer from the same epileptic syndrome, she stressed the urgency with which this decision needs to be made. Existing medical treatments don’t work, are costly, and actually cause harm to the children using them. These kids are short on time.
Conversely, cannabis offers hope to these parents who see other children like theirs being almost completely healed of their constant seizures. The thought of their children having a restored quality of life is not a far-fetched desire in light of the profoundly positive response epileptic children are having to the medicinal extract in Colorado.
During Q&A, the Realm of Caring representatives stressed the nature of the testing and caution used with their product for children. Treatments are properly dosed and administered under the direction of a consenting pediatric doctor.
Importantly, doctors in Utah are lending their voice to the discussion. Three of them, including the University of Utah’s top pediatric neurologist, support the legalization of this medicine. “I would like to express my strong belief that [cannabidiol]-based oils (referred to here in Utah as Alepsia) should be available as soon as possible to Utah children with severe epilepsy,” wrote Francis Filloux, chief of the University’s Division of Pediatric Neurology. “The substance is not psychoactíve or hallucinogenic, it contains less THC than do other materials that can be legally purchased in Utah, and it has absolutely no abuse potential.”
Committee members were unclear in last night’s meeting what exactly was being asked of them. Their statutory mandate is to recommend the addition or removal of certain drugs from Utah’s schedule of controlled substances, but presenters were mixed on their message as to whether legislation was needed or not, and whether the low-THC cannabis extract being used is even banned by current drug classifications.
Whatever the path forward, the parents in last night’s meeting were clearly anxious to see something happen—and fast. Children with Dravet syndrome must live through constant seizures and the only medical treatments available often carry very harmful side effects. Sadly, many of these children die—a potentially preventable occurrence when the cannabis extract is helping one child after another overcome their symptoms at a surprising rate.
No government agent should stand between a doctor and his patient. Many parents want this medicine, their doctors believe they should have it, and the only thing standing in their way is the state. Accordingly, as this week’s editorial by the Salt Lake Tribune states, “It is obvious that Utahns should be allowed access to a [cannabis]-derived medicine to limit epileptic seizures.” It’s really as simple as that.
