Pubdate: Mon, 11 May 2015
Source: Daily Courier, The (CN BC)
Copyright: 2015 The Okanagan Valley Group of Newspapers
Contact: http://drugsense.org/url/5NyOACet
Website: http://www.kelownadailycourier.ca
Details: http://www.mapinc.org/media/531
Author: Liam Casey, The Canadian Press
Page: A4

PARENTS WANT MARIJUANA OIL TREATMENT TO BE MADE LEGAL

Ontario parents of epileptic girl using same treatment that has worked
so well for Summerland family

THORNHILL, Ont. - Gwenevere Repetski turns three next month and she is
finally able to crawl, a milestone her parents thought they would
never see. She was just an infant when she was diagnosed with
epilepsy, a debilitating neurological disorder that has left her
developmentally delayed.

"She was kind of like a bag of Jell-O," says her mother, Reagan
Repetski.

When she was two years old, she could hardly roll over when she was
placed on her back, adds her father, Alex.

Sitting in the living room of their Thornhill, Ont., home, the
Repetskis recall their stressful and emotional journey in search of a
treatment for Gwen.

The first drug she was prescribed - Sabril - only managed to control
her seizures for about a month. The next one was a steroid called
ACTH, which her parents say caused her to gain half her body weight in
three weeks.

Disappointed at the lack of treatment options, Alex reduced his work
hours and dove down the research rabbit hole. That's when he first
read articles online about the success some people said they were
having in reducing epileptic seizures with cannabidiol, one of several
active cannabinoids found in the marijuana plant.

Cannabidiol, or CBD, doesn't cause a high and, when mixed with an oil,
has been widely touted as a potential therapy for hard-to-treat forms
of epilepsy. But many doctors say there's little medical evidence yet
to show if the compound is effective or even safe.

Dr. Orrin Devinsky, a researcher at New York University's Langone
Comprehensive Epilepsy Center, has done a safety study on the use of
an extract of cannabidiol.

Devinsky looked at the daily seizure logs of 137 patients, most of
them children, who took a drug called Epidiolex - a purified form of
CBD - for three months.

The number of seizures decreased by an average of 54 per cent from the
beginning of the study to the end, Devinsky reported last month at an
American Academy of Neurology conference.

"These results are of great interest, especially for the children and
their parents who have been searching for an answer for these
debilitating seizures," Devinsky said at the conference.

However, he cautioned that there's no way to tell how much of the
seizure reduction was due to the placebo effect in which the person's
condition improves because they expect the drug to work.

Similar research by Dr. Kevin Chapman of the University of Colorado
recently raised similar questions. Chapman checked records of 58 young
patients who used various types of CBD oils and found less than a
third reported a significant seizure drop.

Richard Wennberg, a neurologist at Toronto Western Hospital and a
professor at the University of Toronto, agrees that the placebo effect
is higher in epilepsy trials compared to many other treatment trials.

"I'm open-minded, but hugely skeptical," Wennberg says of the supposed
miracle marijuana-based drug for epilepsy, a condition that affects
one in 100 Canadians.

Epilepsy is complicated and sometimes a drug works, he says, but then
it stops and the seizures return. Sometimes the seizures stop
naturally, but come back. Sometimes they stop forever. "It's like
playing whack-a-mole," he says. People are desperate for an effective
treatment and, Wennberg says, that points to failure in drug
development.

"No more than 50 per cent of people with epilepsy have their seizures
fully controlled with medications now," he says. "There is a huge need
for something better."

Alex Repetski says research and drug approvals take a long time - time
his daughter doesn't have.

Back in mid-2013, encouraged by what he learned during his research,
Repetski tried to convince Gwen's doctors to treat her with marijuana,
but they refused. He even considered moving his family to Colorado,
one of 11 U.S. states that allows limited access to some
cannabidiol-containing products.

One of those products has become known as Charlotte's Web, named after
a five-year-old wheelchair-bound girl who had an incurable form of
epilepsy called Dravet Syndrome. Charlotte, whose story has been
widely reported around the world, had to be fed through a tube while
suffering 50 seizures a day.

According to reports, her seizures were dramatically reduced after she
started using oil extracted from a strain of marijuana developed by
five Colorado brothers, the Stanleys. Several years later, the reports
say, Charlotte has only one or two seizures a month.

A Summerland family has also reported that Charlotte's Web has helped
their daughter.

At a medical conference in Kelowna last October, Kyla Williams'
grandfather Chris Nuessler said medical tests corroborated the
family's observations that treatment with cannabis oil appeared to be
reducing the number of seizures the two-and-half-year old Summerland
girl was suffering.

Nuessler described how Kyla, who has a severe seizure disorder, had
shown dramatic improvement since the initiation of treatment with
cannabis oil. In fact, the results were observed almost immediately.
The family turned to cannabis oil after doctors said they had
exhausted their treatment options.

"She still has light seizures when tired, but she is now more alert,
much more socially interactive and is even sucking her thumb again,"
he told the conference. He pushed his own thumb against his cheek and
said, "She had lost so much motor control on the drugs the doctors
were giving her that she couldn't even get her thumb into her mouth."

"Kyla cannot walk, cannot talk and cannot hold herself up. We don't
know what the future holds, but we do know that her quality of life is
so much better now," he said.

While extracting oil from marijuana is illegal in Canada, new
legislation allows the development of the medical marijuana industry.

Under the Marihuana for Medical Purposes Regulations, federal
authorization to possess medicinal pot for patients shifts from Health
Canada to physicians.

After the new law went into effect in March 2014, the Repetskis asked
several doctors to authorize the use of pot for their daughter. One of
them agreed.

There was still one problem: Gwen was a young child and couldn't smoke
or vapourize the pot, so her father learned how to make marijuana oil
in his kitchen. He then sent the oil to a lab for testing before
giving it to his daughter three times a day. She hasn't had a seizure
since, he says. "We saw a massive improvement - now she's crawling and
feeding herself," he says with a broad smile. She even says "mama" and
"dada."

Gwen's last electroencephalogram in January showed no epileptic brain
activity, Alex says.

One of Gwen's doctors is also impressed.

"Since she started, I have seen a remarkable improvement," says the
doctor who does not want his name published for fear he'll be deluged
by people requesting prescriptions for pot.

One of the girl's physiotherapists, Bernadette Connor, says she's also
seen "dramatic improvement" in Gwen's motor development and her
spatial awareness since the girl started using marijuana oil.

Repetski knows that what he's doing for his child is
illegal.

Before going public with his story, he sought advice from his friend,
criminal lawyer Daniel Brown.

Brown explains that Gwen's doctor signed an exemption allowing the
girl to take marijuana, but there are strict rules surrounding that
exemption.

"As soon as he converts it to a different form, such as oil, the
exemption no longer applies."

That leaves the Repetskis in possession of marijuana and, since they
give it to their daughter, they are trafficking it, Brown says.

It's unlikely police would charge Alex Repetski, says Brown, but he
agrees it's still a risk. If that happens, Brown says he would defend
his friend in court by arguing the charges are unconstitutional.

A similar case is currently before the Supreme Court of
Canada.

Owen Smith, of Victoria, was charged with trafficking for selling
marijuana oil and cannabis-infused cookies - instead of just dried
marijuana - to those with medical marijuana exemptions.

A British Columbia Supreme Court judge said the regulations violated
the Charter of Rights and Freedoms, a decision that was upheld by the
Court of Appeal.

The federal government asked the Supreme Court to weigh in, and a
decision has yet to come.

A Health Canada spokesman says the processing of marijuana into other
products, including marijuana oil, falls outside of the scope of the
Marihuana for Medical Purposes Regulations.

Sean Upton says the regulations simply mean the only thing available
is dried marijuana.

"In theory, maybe Health Canada could possibly do something about
somebody busting it down, but I don't think so," Upton said.

"Look, there are a lot of parents who are doing this with nobody
trying to stop them."

The Repetskis hope the laws will eventually change to allow parents
with children like Gwen to legally access medical marijuana oil.

Alex Repetski is such a believer in the treatment that he now works
for MedReleaf, the company that sells him Gwen's marijuana.

Back in their home, Gwen bounces from toy to toy in the family's
living room. The floor is covered with thick black gym mats for her
protection.

"Hopefully, if she remains seizure-free, she can keep getting better
and better," says her father.
- ---
MAP posted-by: Matt