HALIFAX — A six-year-old girl and her parents were at the Nova Scotia legislature Tuesday to lobby for the province to cover the cost of using cannabis oil to treat her seizures.
Kaylee and Nick Jones and their daughter Sophie were at the house of assembly to present a petition with 1,368 signatures in support of Nova Scotia covering the cost of CBD-based medicines for children with life-threatening conditions.
The little girl was born with a rare chromosome abnormality that causes epilepsy, ataxia, migraines, anxiety and low muscle tone.
Kaylee Jones, 29, says the family spends about $400 a month on the CBD oil — which she says has helped reduce her daughter's seizures dramatically compared to conventional medications.
The mother said the money going to pay for the cannabis oil — which is known as Charlotte's Angel and is produced by Nova Scotia-based Aqualitas — is roughly equivalent to the mortgage payment on their home.
“We’ve been sacrificing a lot of time and effort to fundraise," said Kaylee Jones. "If we could have a solution, we wouldn’t have to worry about it. It would be a big financial burden off our shoulders and others."
“I know that others are going into debt for this," she added. "I think the government really needs to look at it.”
Researchers at Toronto's Hospital for Sick Children in 2018 reported reductions in seizures of children with Dravet syndrome, a rare genetic form of epilepsy, who received CBD oil with a small amount of THC.
CBD, also referred to as cannabidiol, doesn't cause a high. THC, or tetrahydrocannabinol, is marijuana's major psychoactive component.
However, Nova Scotia Health Minister Michelle Thompson says her department is awaiting the results of a review by Health Canada before approving funding of the medicine.
She said during an interview that while she's aware there is "real-life evidence that emerges," the department must take a standardized approach to approving medicines for funding.
"I think it’s important we have a consistent way in which we add things to the formulary and there is a very rigorous process. We have a responsibility to ensure the things we cover are evidence-based. We want to continue to follow that process," she said.
Thompson said that if Health Canada provides an approval, “we’ll reconsider then.”
Kaylee Jones said Sophie's previous regime of anti-seizure medications had negative side-effects that led to regular hospital visits in the first three years of her life. The CBD-based medicines have controlled the frequency and duration of her seizures, she said, to the point where she no longer needs trips by ambulance and has fewer migraines, less anxiety and more mobility.
This report by The Canadian Press was first published April 11, 2023.
The Canadian Press
