Liam McKnight is six years old and suffers from severe epilepsy. He tried 10 anti-epileptic medications and a special diet before his mother got him a prescription for medical marijuana.
"Since starting cannabis he has seen a 99 per cent reduction in his seizures, going from 60 plus seizures a day, to sometimes none or maybe one seizure a day," Mandy McKnight says. Marijuana is believed to help control some forms of epilepsy.
But there's a problem.
McKnight is breaking the law by giving her son his marijuana in the form of an extract. Under the Marihuana for Medical Purposes Regulations, which came into place on April 1 this year, only the dried form of marijuana that is smoked or vaporized is legal.
- My QP: Do you have a question for government? Send it to us
In a new feature on CBC News Network's Power & Politics that invites Canadians to send in questions for decision-makers, McKnight asked the federal government to explain the law.
"Why won't the government of Canada allow Liam to have access to his medication in a form of delivery suitable for a six-year old? Why does our six-year old son have to smoke cannabis?" McKnight said in a video sent in to Power & Politics' My QP.
Clinical trials for 'patient safety'
Eve Adams, parliamentary secretary to the minister of health, said in a statement, "Our hearts go out to any family dealing with a child with illness." But she says clinical trials are needed to prove the safety and effectiveness of cannabis extracts.
"If any serious researcher is interested in beginning a clinical trial on the benefits of marijuana oil to treat rare diseases, I would encourage them to contact Health Canada. Clinical trials are the appropriate path to ensure that patient safety can be protected, and so that evidence on the effectiveness of any new proposed drug can be collected."
But the chair of the Canadian Medicinal Cannabis Industry Association, Marc Wayne, says there is already a growing body of clinical evidence regarding the effects of cannabis. And he notes there is little finanical incentive for marijuana producers to launch a clinical trial.
"Because cannabis is a plant and cannot be patented and protected, licensed producers are unable to take the risk of investing the hundreds of millions of dollars required to take cannabis through the lengthy drug approval process required for the approval of patented prescription pharmaceuticals," Wayne told Power & Politics host Evan Solomon.
Opposition say law 'unbelievable'
The NDP Health Critic Libby Davies says it is "unbelievable" Liam McKnight can't get the treatment he needs. "We have a government that is focused on an ideological position when it comes to marijuana instead of a realistic, pragmatic evidence-based position."
The marijuana that pediatric epileptic patients like Liam take is made with very low THC content — the psychoactive compound that makes users high. The active ingredient that is believed to control seizures is CBD, or cannabidiol.
Liberal Public Safety Critic Wayne Easter told Solomon that letting patients use medical marijuana extract is an "extremely serious issue." He says it "needs to be looked at with the objective of making it available."
The Supreme Court of Canada has been asked to rule on the law prohibiting medical marijuana extracts next year. The law had already been struck down by the B.C. Court of Appeal in August.
The defence lawyer who is taking the case to the Supreme Court, Kirk Tousaw, is confident the law will be overturned.
"I'm very confident in our prospects of success. We've had a finding in our favour by the trial judge, we've had a finding in our favour by the British Columbia Court of Appeal, and I expect we'll have a finding in favour of Canadian patients by the Supreme Court of Canada," he told Power & Politics.
But Mandy McKnight says she does not have time to wait for the law to be struck down. She lives in fear that Liam's next seizure will kill him.
"I don't know how long Liam is going to be with us but... I want him to have quality of life. And (medical marijuana) is giving my son a life."