Starting Today Cannabis Oil Available for Treatment of Children with Epilepsy in Utah
Today, Charlee’s Law takes effect in Utah, allowing children suffering from severe epileptic seizures to be legally prescribed a marijuana extract for medicinal purposes.
Utah Gov. Gary Herbert signed the bill, also called HB105, in late March. The bill is known as Charlee’s Law, named after six-year-old Charlee Nelson, who suffered from severe seizures due to Batten Disease.
Batten disease is the most common form of a group or disorders called Neuronal Ceroid Lipofuscinoses (NCL). The various forms of NCL are classified by age of onset and have the same basic cause, progression and outcome, but are the result of a different gene, according to the Batten Disease Support and Research Association (BDSRA). Over time, children with the disease suffer mental impairment, worsening seizures and progressive loss of vision and motor skills. Children with Batten disease eventually become blind, bedridden and unable to communicate. Currently, there is no specific treatment available that can stop or reverse the symptoms of the disease, and therefore it is always fatal.
Charlee died right after the legislation was passed. Although the use of cannabis oil might not have been able to save her life, it could have improved her quality of life and given her a longer future.
“The hemp extract that Charlee’s Law allows Utah parents to administer to their children might have helped improve Charlee’s quality of life and prolong her time with her parents, Jeff and Catrina Nelson. The Legislature dedicates Charlee’s law to Charlee, her family, and all of the sick Utah children searching for a cure,” said Rep. Froerer
The Law allows for the possession of a marijuana that is high in cannabidiol (CBD) and low in tetrahydrocannabinol (THC) oil for use in intractable epilepsy. The oil, which has been used for over two years in Colorado, has seen an 80 percent efficacy rate in reducing seizures by 50 percent on average. Individuals will not be allowed to get the cannabis oil in the state of Utah, but they will be allowed to obtain the oil from another state, such as Colorado, and legally bring it back. There are over 50 families in Utah that are on a waiting list to get cannabis oil from Colorado.
The law requires parents to first get a letter of recommendation from a neurologist that suggests the oil would be beneficial for the children. To qualify, a patient must have previously received three other anti-epileptic drugs.
“The words of support from legislators, along with their affirmative votes on our behalf, show an immense understanding and compassion for the suffering of the children and families of Hope 4 Children With Epilepsy,” said Jennifer May, H4CE co-founder and mother to Stockton, who has Dravet syndrome. “We are grateful to Utah for stepping up and helping open the way for research into the possibilities behind this treatment option,” she commented on the passing of Charlee’s Law.
Sources: Utah.Gov; Hope 4 Children With Epilepsy
Last updated: 7/1/14; 10:40am EST
