Billy Caldwell, Alfie Dingley, Murray Gray: three young boys living with severe epilepsy. Their stories have been broadcast far and wide which has led to the government reviewing its stance on medicinal cannabis.
“Over the weekend, I issued an emergency licence to allow Billy Caldwell’s medical team to access cannabis-based medicine to treat life threatening seizures caused by a severe form of epilepsy,” announced Home Secretary Sajid Javid in the Houses of Parliament on Monday 19 June.
Like many families across the UK caring for children with severe epilepsy, sometimes approved medication doesn’t work. Although not pharmaceutically proven, cannabis for medicinal purposes has had some success in stopping seizures.
The debate on medicinal cannabis started in earnest at the start of June – after months of simmering under the surface. It began with one young boy and his mother’s determination to help him get better. In a small town in Northern Ireland, Charlotte Caldwell campaigned to get CBD oil prescribed on the NHS for her son Billy.
CBD oil is a by-product of cannabis, which comes from the marijuana plant. In the UK, cannabis is a class B drug, which means it’s illegal to possess and carries a 14-year jail sentence and an unlimited fine. The part of the plant that is illegal within the UK is not in fact CBD (or cannabidiol), it’s tetrahydrocannabinol (THC), which causes the symptoms that are associated with smoking or ingesting cannabis.
1/3 Home Secretary @SajidJavid statement on the Billy Caldwell case: “This morning, I’ve used an exceptional power as Home Secretary to urgently issue a licence to allow Billy Caldwell to be treated with cannabis oil.
— Home Office (@ukhomeoffice) June 16, 2018
“Cannabidiol/cannabis has long been thought to have therapeutic properties. In the UK there is a legal issue, regarding the amount of THC in the product – the component that causes the medical high. Cannabidiol products are legal if they contain less than 0.3% THC,” explains Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy and spokesperson for charity, Young Epilepsy.
Earlier in the year, Billy became the first person to receive a prescription for CBD oil from the NHS before the Home Office intervened, forcing his mother, Charlotte, to travel to Canada to obtain medication for her son.
Whilst using CBD oil, Billy went from having 100 seizures per day to being seizure-free for nearly 300 days. On her return from Canada, Charlotte was stopped at Heathrow Airport and had the cannabis oil procured for Billy confiscated – Billy was admitted to hospital days later.
“There are many ‘hemp oils’ on the market – these legally stand as they allegedly contain less than 0.3% THC, but they are not produced to a pharmaceutical standard,” adds Professor Cross. “It has been demonstrated that even different batches of the same product have variable content. Doctors cannot, within their code of practice, prescribe such products.” It’s for this reason the demand for regulated medicinal cannabis is so important.
In Edinburgh, a similar tale is unfolding. Karen Gray has been tirelessly campaigning to get CBD oil on NHS Scotland for her five-year-old son, Murray, who has Myoclonic Astatic Epilepsy (MAE), which results in multiple, life threatening seizures every day. Living with debilitating tonic clonic seizures (where the body convulses) has affected Murray’s education and childhood.
Liberal Democrat MP for Edinburgh West, Christine Jardine, has been working closely with the family and encouraging progress to evaluate the benefits of medicinal cannabis.
“I’m hugely relieved for Murray, and for all the other children, that [the government has] come to this decision. It’s a pity that it’s taken so long, but they have come to it now and I welcome it,” says Christine. “Specialists in the hospital, who know how to use CBD oil and the dosage, need to be the ones to make the decision on whether or not a child gets the treatment – not politicians.”
Delivering a 150,000 strong petition to 10 Downing St, with my constituent Karen Gray. Her son Murray suffers from a rare form of epilepsy and legalizing medical cannabis would help. My colleague @agcolehamilton also supporting. pic.twitter.com/BOxXAlsjE8
— Christine Jardine MP (@cajardineMP) April 28, 2018
“I don’t think you can overestimate how painful and difficult it can be for your child to have a condition, which you know could be life threatening, and there is something that can relieve that, but you’re not able to get it,” adds Christine on the situation Charlotte Caldwell found herself in when Billy’s CBD oil was confiscated at Heathrow Airport.
Christine has experienced epilepsy firsthand as she herself lives with the condition. Although Christine’s epilepsy is not as severe as Billy, Alfie or Murray’s conditions, she can appreciate and empathise with the struggles of watching young children deteriorate due to lack of medication – currently, the government holds the power over physicians. It’s time for Britain to revaluate their policy on medicinal cannabis to prevent families or individuals going down unregulated routes to get medication.
When it comes to cannabis use globally, the UK appears to be behind the times. In 14 European countries, cannabis is legal for medicinal purposes and in Argentina, Puerto Rico, Israel, Mexico, Turkey and Zambia and Zimbabwe as well.
Similarly, in the US medicinal cannabis is legal in 29 states and nine states in the District of Columbia, which have legalised cannabis for medical and recreational use. No matter your standpoint on cannabis, the necessity to study the medicinal properties of the plant are paramount.
As recently as 20 June 2018, just days after Billy was released from hospital when he received CBD oil to regulate his seizures, Canada became yet another country to legalise cannabis for medicinal and recreational use. Christine believes the UK now has an opportunity to see what happens worldwide and how it could benefit at home.
“Epilepsy, MS, all sorts of chronic pain conditions – that has to be the priority. However, we should be watching Canada and see what happens there, because we have to accept that the war against drugs has failed and all we’re doing is pushing people into the backstreets… In terms of medicinal cannabis, we need to ensure we don’t get derailed and help these children as soon as practically possible. We know it’s the right thing for them to have the cannabis oil available,” concludes Christine.
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