On this Purple Day, the annual international epilepsy awareness day, British six-year-old Alfie Dingley is still waiting to hear if the UK government will change its laws and allow him to use cannabis oil to prevent his seizures. The boy has as many as 150 seizures per month brought on by a rare form of epilepsy.
On March 20, Dingley’s family presented a petition to the government with more than 370,000 signatures, including those of celebrities such as Patrick Stewart and Richard Branson.
Alfie Dingley’s family shouldn’t have to break the law to get a medicine they need – medicinal drug use shouldn’t be a matter of criminal justice, but a matter of public health https://t.co/ivRuE49X8n @End_Our_Pain pic.twitter.com/Js0ArYhoN7
— Richard Branson (@richardbranson) March 14, 2018
To mark Purple Day, the Liberal Democratic Party put out a video supporting the Dingley family’s efforts to legalize medical cannabis.
Today is Purple Day, a day that aims to raise awareness about epilepsy. Last week, the Liberal Democrats backed Alfie Dingley’s campaign for cannabis oil. May must reassess her administration’s entire approach to medicinal cannabis. #PurpleDay pic.twitter.com/CzIOfON2eE
— Liberal Democrats (@LibDems) March 26, 2018
Cannabis oil is available in the Netherlands, where the family has travelled to test its efficacy on the young boy’s symptoms, but it is banned in the UK. Dingley’s parents said his response to the medicine was “dramatic,” reducing his seizures from 150 per month to just one.
“I don’t want to break the law by going to Holland and bringing his medical cannabis into the UK illegally,” Alfie’s mother Hannah Deacon told the BBC. “And why should I have to do that?”
In Canada, the Cannabidiol (CBD) in cannabis has made some traction as a potential treatment as an anti-epileptic. But until last spring, the majority of evidence came from personal anecdotes like Alfie’s family’s. Then in May of 2017, the New England Journal of Medicine published a study which showed that CBD reduced the median frequency of seizures from 12.4 to 5.9 per month in those with Dravet syndrome, a type of childhood epilepsy. Seizures in study participants who took a placebo instead reduced from 14.9 to 14.1 per month.
Purple Day was founded in Nova Scotia by another six-year-old with epilepsy, Cassidy Megan. In 2009, her local awareness campaign went global and now takes places in dozens of countries and on every continent, including Antarctica.
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