Cannabis reduces seizures in some children. But families have to pay out of pocket for it
Photo of Katie Muldoon Roy (right) with her mother Meredith
By Louise Kinross
When Ottawa Valley resident Katie Muldoon Roy began taking cannabis oil to treat her intractable seizures, her parents were delighted to see them drop from about 50 to 30 a day. “We did see a considerable decrease, but also Katie was more engaged and alert," says her mother Meredith.
Katie is 13 and has taken the oil since she was six. Initially, her parents had to “buy the dried bud, bake it, extract it and send it to Vancouver for testing,” Meredith says. The cost was about $1,000 a month, out of pocket.
The oil is mass-produced now and the price for Katie's family has dropped to about $300 a month. “We’re able to afford it, but for families in different financial situations, to not be able to try the oil for your child would be heartbreaking," Meredith says. “It’s a drug just like her other seizure drugs.”
The cost of cannabis oil depends on the dose and weight of a child, and can range from several hundred dollars a month to over $1,000 a month, says Laura Wang, a neurology pharmacist at SickKids Hospital in Toronto. “At the dose that has been studied in trials, if you have a child who weighs [45 pounds], even the cheapest products on the market will still be about $500 a month," Laura says. "Many oils are more expensive than that.”
Studies of Epidiolex, a pharmaceutical grade cannabis oil approved by the U.S. Food and Drug Administration but not available in Canada, found the oil reduced seizures in patients with Dravet syndrome and Lennox-Gastaut syndrome, two childhood-onset forms of severe epilepsy. More recently, Epidiolex has been approved for use in American patients who have tuberous sclerosis, a rare genetic condition, and seizures.
“What we consider the gold standard of evidence is a double-blind, randomized control trial where one population gets the drug and the other gets a placebo,” Laura says. “They did this with Epidiolex and found a clinically significant decrease in seizures in the children receiving it.”
Cannabis oil “acts on receptors to reduce the overall propensity of the brain to seize, similar to other seizure medication,” Laura says. It is usually given twice a day by mouth or feeding tube. "A lot of our patients are on it and while some have seen little to no change, some families have definitely reported benefits. Some families can’t afford it, or can’t afford the medication at the optimal dose for their child, so they take a lower dose.”
Families not being able to afford a therapeutic dose was raised as a concern in a 2020 qualitative interview study of 12 Canadian pediatric neurologists published in the journal Seizure. “Families sometimes don’t advance the treatment to a therapeutic dose because the cost is prohibitive and in that case, I think that’s all a kind of a waste,” one neurologist in the study said.
Another argued cannabis oil should be funded for drug-resistant epilepsy in children when shown that it works. “It needs to have some government or extended healthcare mechanism to fund families where it clearly is working…If it works then I think that it saves the healthcare system a lot of money because kids aren’t in status, aren’t having hospital visits, aren’t needing to be on other medications, and so it saves the system and so there should be coverage for like any other drug, if it’s efficacious for them."
Pamela Andrews' son tried cannabis oil last year. The 18-year-old has Lennox-Gastaut syndrome and over 70 seizures a night. "He's been having seizures his whole life, and they've never been under control," Pamela says. Her son was able to get funding for a four-month trial of cannabis oil from Aaron's Apple and Jennifer Ashleigh Children's Charity. "But the trial dragged on to nine months with no end in sight. The neurologist kept making adjustments and changing the brand of oil we were using."
Because her son's seizures are hard to see, he needed an EEG to evaluate the oil's effectiveness. It took three months to book the procedure, only to learn that the oil wasn't working. "At a certain point, around the nine-month mark, I ran out of funds," Pamela says. "I started out paying about $1,000 a month, but prices came down and I was only paying $550 a month towards the end." Despite their first experience, Pamela hasn't given up hope that the oil might help her son. "I have another specialist doctor I'd like to try for the [cannabis] oil."
One mother on an Ontario Facebook support group wrote that cannabis oil decreased the number, intensity and length of her son's seizures, as well as his recovery time. But even though he receives a 20 per cent discount on the oil because he's on the Ontario Disability Support Program, it's hard to cover the cost. "Prescription medication should be covered like other prescription medication," she wrote.
Laura at SickKids notes that “cannabis is covered for veterans, but not for epilepsy. We’ve written letters to private insurers hoping they will fund it, but haven’t been successful.”
Ontario's public drug program isn't able to cover cannabis oil because the product doesn't have a drug identification number. “The manufacturers of Epidiolex, or another licensed cannabis producer, would have to invest a significant amount of resources to get Health Canada approval,” Laura says. Epidiolex is available in the United States and Europe, where it’s covered by some insurers.
Holland Bloorview's Family Support Fund subsidizes the cost of medications not covered by OHIP, like cannabis oil. A child can access up to $500 a year.
Some families at SickKids have started GoFundMe campaigns to try to raise funds for expensive medications that are not publicly covered, Laura says.
“In an ideal world, Canada would recognize the therapeutic impact of cannabis for these children,” says Meredith, noting that the oil is more affordable than some of her daughter's other seizure drugs.
"I worry with our current economic climate that [cannabis] oil will become less accessible," says Maria Zak, a nurse practitioner in the Division of Neurology at SickKids.
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