With nearly one-third of people with epilepsy having forms resistant to current medication, some people turn to medical cannabis, driven by hope based on anecdotal evidence that it will work.
Researchers at the University of Sydney’s Lambert Initiative, in partnership with Epilepsy Action Australia, are seeking parents who use cannabis-based medicines to treat their child’s epilepsy. Many Australian families break the law to obtain cannabis to treat the symptoms of childhood epilepsy, generally after they’ve exhausted all other medical options. Often, parents report that the frequency and severity of their child’s seizures decrease after treatment.
Launched today, the Paediatric Epilepsy Lambert Initiative Cannabinoid Analysis (PELICAN) study hopes to interview these parents, and collect samples of the cannabis-based treatments they give to their children. Parents will have the option to receive individual feedback on the sample they provide. Researchers also want to talk to parents of kids with epilepsy who’ve never used cannabis-derived treatments, and interview parents that once gave them to their child, but stopped.
Professor Iain McGregor, Lambert Initiative psychopharmacology expert and PELICAN researcher, assured full confidentiality for parents who participate.
Last year, New South Wales Premier Mike Baird allocated $3.5 million for clinical trials of a cannabis-derived drug to treat severe childhood epilepsy. In April, Victoria legalised medical marijuana for parents of kids with epilepsy. McGregor said this new wave of law reform means it’s much easier for researchers to get on with their job.
“In my field as a pharmacologist who studies cannabinoids, traditionally, we could only get a research grant if we showed that cannabis did something really bad, like it caused schizophrenia in teenagers or made you forget things more easily,” McGregor explained. “It’s been quite a remarkable transformation over the last couple of years and what we’ve seen now is widespread acceptance that cannabis is extremely complex. There’s only one cannabinoid, THC, that gets you intoxicated, but there are at least another 104 cannabinoids in the plant that may be therapeutic [for] everything from diabetes to obesity to schizophrenia to epilepsy to dementia. We’re only just starting to unlock this incredible therapeutic potential and understand that the human body and brain seem particularly primed to respond to some of the components in the cannabis plant; this can happen completely independent of intoxication.”
The Lambert Initiative began with a $33.7 million donation to USYD from millionaires Barry and Joy Lambert. Katelyn, their granddaughter, has Dravet syndrome, a genetic abnormality that affects the brain’s electric signalling system. It can cause blackouts and epileptic fits, which she experiences. Katelyn’s father, and the Lambert’s son, Michael, treated his daughter with cannabis oil, risking a two-year jail sentence. He reported after this treatment that his daughter experienced immediate relief from her symptoms.Do you have an idea for a story?
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