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Parents of Epileptic Toddler Want More Marijuana Research, Funding Cut 7 Years Ago

By on July 22, 2013
Kaitlyn Pogson suffers from a rare form of epilepsy that causes hour-long seizures. Her parents believe that marijuana may be the best treatment, but a lack of research prevents doctors from considering it as an option.

Kaitlyn Pogson suffers from a rare form of epilepsy that cause hour-long seizures. Her parents believe that marijuana may be the best treatment, but little research exists. – A Toronto couple is asking the Canadian government to sponsor research on medical marijuana for kids, which they believe could save their daughter’s life.

Kaitlyn Pogson is nine-months-old and suffers from a rare form of epilepsy called Dravet’s Syndrome. The disorder causes frequent seizures – which started at two months – and now last up to an hour at a time. A lack of treatment options has left Kaitlyn’s family with little hope, her father, Barry, told Global News:

“You feel helpless… all you can do is stand and watch, there’s nothing you can do to help your child.”

But after researching alternative treatments on their own, Kaitlyn’s family encountered success stories from the U.S. about a controversial medicine. The medicine is CBD – one of the compounds found in medical marijuana that some say can reduce seizures by up to 99 percent. On top of that, CBD is not psychoactive – meaning that it can’t get you high.

Kaitlyn’s mother, Shannon, says CBD is a popular medicine in Colorado – one of the 19 U.S. states where medical marijuana is legal.

“It’s worked in so many kids and so much so that there’s a waiting list in Colorado to get access to it.”

But the treatment is not available to children in Canada, which Shannon says is due to a lack of clinical research.

“This isn’t clinical trial evidence and doctors need clinical evidence. It’s all anecdotal.”

To their knowledge, there is no research being conducted on CBD in Canada, which Kaitlyn’s parents believe is because of the stigma attached to medical marijuana.

Despite being legal in Canada since 2001, the government has refused to fund research over the last seven years, leaving families like the Pogsons with little evidence that will convince their doctors to prescribe the medicine.

Medical Marijuana In Canada

In 2001, Canada became the first country in the world to legalize medical marijuana, but gaining access to the medicine has never been easy.

By the end of 2012, there were less than 30,000 patients in Canada who were authorized to use medical marijuana, out of a total population of about 35 million. Difficulty in accessing marijuana under the original program led Health Canada to implement major changes last month.

Health Minister Leona Aglukkaq announced the government's new medical marijuana system on June 10, 2013.

Health Minister Leona Aglukkaq announced the government’s new medical marijuana program on June 10, 2013. (Read the press release about the new MMPR)

One reason for the low number of patients is refusal from doctors to recommend marijuana as a treatment. They often cite a lack of research as grounds for their refusal.

In response to Health Canada’s changes – which will make access to marijuana the sole responsibility of health professionals – Dr. Anna Reid, president of the Canadian Medical Association (CMA), said this in a press release:

“Asking physicians to prescribe drugs that have not been clinically tested runs contrary to their training and ethics.”

For health professionals, clinical trials are the ‘gold standard’ of determining the safety and effectiveness of a particular drug. Unfortunately, clinical trials are expensive and no one seems to be interested in funding research on marijuana – not even the government.

Government Cuts Marijuana Research

In 2001, the government launched the Medical Marijuana Research Program with a $7.5 million budget in an attempt to increase scientific data on this form of treatment. However, the Conservative government decided to cancel this program in 2006, withdrawing the $4 million of the budget that remained.

Mark Ware, MD, a pain specialist at McGill University and the only researcher to ever receive funding under the program, said this about the decision:

“[They have] suddenly taken away the research, or the possibility to do additional research, to inform not only the physicians but patients about safety and efficacy.”

Dr. Mark Ware received 2 research grants from the marijuana research program before it was shut down. The first study was published in 2010 and showed that daily marijuana treatment could reduce pain and improve sleep in patients with neuropathic conditions

Dr. Ware received 2 research grants from the marijuana research program before it was shut down. The first study was published in 2010 and showed that marijuana could reduce pain in patients with neuropathic conditions.

According to a government spoke person, the decision meant that research would become a responsibility of the pharmaceutical industry:

“…clinical research regarding the use of marijuana for therapeutic purposes and the development of marijuana-based products is best undertaken and funded by the pharmaceutical industry.”

But medical marijuana has never been an interest of pharmaceutical companies and that has yet to change. Seven years later, the private industry has not funded a single study on medical marijuana, leaving patients like Kaitlyn in a difficult situation.

Parents Petition For Reconsideration

After trying everything that doctors have recommended, Kaitlyn’s parents believe CBD may be the last hope for their daughter.

“There isn’t really any other solid hope for a treatment out there. All the drugs either don’t work, or start out working and then stop.”

They’re optimistic that an online petition will convince the government to reconsider funding marijuana research. The petition now has over 2,500 signatures, which is more than half of the 5,000 that they’re aiming for.

Kaitlyn's mother Shannon and father Barry spoke to CTV News last week

Kaitlyn’s mother Shannon and father Barry spoke to CTV News last week. The couple is circulating an online petition that they hope will convince the government to fund research on medical marijuana. (You can sign the petition by clicking here)

With every day that passes, Kaitlyn’s chance of living a normal life worsens. Dr. Berge Minassian, a neurologist at Toronto’s Hospital for Sick Children, told Global News that Dravet’s can have a lifelong impact starting from the age of one – when patients begin to regress and normal growth plateaus.

“They sometimes develop autism… It’s not just the seizures but it also affects their cognitive function quite severely.”

For now, Kaitlyn only has a seizure once every three days. But as she grows older, the seizures could become as frequent as 300 per week.

One in every five kids with Dravet’s don’t live to adulthood. Others are never able to walk or talk normally. Kaitlyn’s parents hope that their petition will help raise awareness of this potentially life-saving medicine.

But Barry says that requires overcoming the stigma that has been attached to marijuana for decades.

“If this was a plant that was just discovered in the mountains yesterday and had no ties to anything, people would be hailing it as a miracle drug. It’s a lot to do with people’s perception of what we’re looking for.”

Now may be the right time, as support for medical marijuana seems to be growing. A recent Globe and Mail poll found that 74% of their readers supported the idea of doctors prescribing marijuana.

But without more research, doctors will remain hard to convince.

  • Brown Sugar

    If that child needs it , then they should be able to give this to their child. This is why people don’t want the government in this. This child doesn’t have years and years to wait . Marijuana should just be decriminalized now . After that, the government or FDA can do all the testing they want. And take their time at doing it. But, everyone already knows that it is 100% safe for them. But, the government must play their games. Ugh

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