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It is “highly unsafe” to switch children’s cannabis medicines, says leading epilepsy expert



Medical cannabis report: A woman and her son
Hannah Deacon and son Alfie Dingley whose supply of Bedrocan oils was put at risk due to Brexit.

Children are being put at ‘significant risk’ by changes to their cannabis treatment, a highly-regarded specialist in paediatric epilepsy, has told Cannabis Health.

Dr Evan Cole Lewis, director of the Neurology Centre of Toronto (NCT), who has extensive experience using medical cannabis to treat children with complex epilepsy, says he is concerned that Brexit has left children without access to medication.

Dozens of patients have seen their seizures significantly reduced and quality of life greatly improved since taking Bedrocan oils, dispensed by the Transvaal pharmacy in the Netherlands.

But now they are at risk of running out of medication in a matter of weeks, with prescriptions issued in the UK no longer able to be ‘lawfully dispensed’ by other EU member states.

The Department of Health and Social Care’s (DHSC) advice to pharmacies to find ‘alternative’ products to switch patients onto has been met with criticism by parents and medical professionals.

While other cannabis-based medicinal products are available in the UK, there is ‘significant variation’ from one product to the next and, according to Lewis, ‘many unknowns’ as to how the cannabinoids will interact with each other to treat seizures.

“It is imperative that children who are benefiting from a particular medical cannabis product are not changed to another product,” Dr Lewis wrote in a statement, which he will share with UK leaders. 

“It can be highly unsafe and could result in worsening seizures, or breakthrough seizures.”

Dr Lewis went onto say that if breakthrough seizures occur and a child is switched back onto their previous medication, it does not always work and the seizures may become more difficult to control.

This is something he has seen in treating thousands of complex epilepsy patients, he tells Cannabis Health.

Dr Evan Cole Lewis, director of the Neurology Centre of Toronto (NCT)

“I treat cannabis the same as any other anti-epileptic drug, it’s just another tool in the toolbox and therefore I utilise it with the same principles as I use for the more traditional anti-epileptic medications,” he says.

“When it comes down to the question of switching from one product to another, this is something that we are very hesitant to do because we know from our clinical experience that all these drugs work in very different ways.” 

Dr Lewis adds: “We don’t know a lot about cannabis but what we absolutely do know is that one product is not the same as another.” 

“We also know that if we switch someone to another drug and that person does not respond, and we then have to switch back to the original drug, it is much harder to regain seizure control.”

Some of the children who have been taking Bedrocan oils for a significant period of time, have gone from suffering hundreds of seizures a day to being seizure free for several months. 

“If you have a child who has gone from having a significant number of seizures a day to zero, I would advocate to the end of days that the child should not change products,” Lewis continues.

“It is very problematic if a child is being forced to do so because of regulations and laws.”

Dr Lewis described the situation facing these families as a “sad state of affairs” and said he felt for the medical professionals who were being forced to make a decision which leaves these children at risk.

“As physicians we take a Hippocratic Oath to do no harm and now they are being forced by extraneous factors to practice medicine in a way that contravenes everything that they know about epilepsy,” he says.

“That would make me feel extremely uncomfortable.”

Health Secretary Matt Hancock has previously said the government is working to “find a solution”. 

Speaking to the BBC on Thursday 7 January, he said the decision was one made by the Dutch government, but that he was working “very closely” with them to “change the position”.

Meanwhile Prime Minister Boris Johnson is yet to respond to a letter written to him personally by campaigner Hannah Deacon, whose son Alfie has just a few week’s supply left of his Bedrolite oil, which is prescribed through the NHS.

Hannah Deacon

Alfie has been seizure-free for over a year

Before beginning treatment with the oil Alfie’s life had been dominated by clusters of epileptic seizures that began at just eight months old. On one occasion this resulted in a three-week stint on life support in intensive care.

He has now been almost completely seizure free for well over a year and is able to attend school and live a relatively normal life.

“Without access to his medication Alfie would likely go back to having dozens of seizures, any of which could potentially be life-threatening,” Hannah said.

“A clinical decision to prescribe Bedrolite has been made by Alfie’s doctor and to change it to anything else would be dangerous.

“Just because an oil contains CBD and THC in it doesn’t mean it’ll have the same effect.”

Professor Mike Barnes, founder of the Medical Cannabis Clinicians Society, who obtained the first full license to prescribe medical cannabis in the UK, explained: “Each variety of cannabis is subtly different and you can’t just swap a child from one product to another.

“It shows an astonishing level of ignorance to think that every cannabis product is the same when there are 147 different cannabinoids in each plant.”

Professor Barnes described the situation as “appalling”.

He added: “It is not an exaggeration to say that one or two children will die if they can no longer access this medication.”

While some in the UK have pointed out that there is no ‘established evidence’ that switching from one product to another will increase seizures, Dr Lewis argues: “I agree, there isn’t established evidence, but that doesn’t mean it isn’t going to happen. 

“We have no way to calculate that risk and that is not a great argument in medicine at all.”

He adds: “I don’t presume to know what is going on at a governmental level, but I would hope that physicians who have the practical clinical experience are being consulted prior to jumping into these decisions.”

Sarah Sinclair is a respected cannabis journalist writing on subjects related to science, medicine, research, health and wellness. She is managing editor of Cannabis Health, the UK’s leading title covering medical cannabis and CBD, and sister titles, Cannabis Wealth and Psychedelic Health. Sarah has an NCTJ journalism qualification and an MA in Journalism from the University of Sunderland. Sarah has over six years experience working on newspapers, magazines and digital-first titles, the last two of which have been in the cannabis sector. She has also completed training through the Medical Cannabis Clinicians Society securing a certificate in Medical Cannabis Explained. She is a member of PLEA’s (Patient-Led Engagement for Access) advisory board, has hosted several webinars on cannabis and women's health and has moderated at industry events such as Cannabis Europa. Sarah Sinclair is the editor of Cannabis Health. Got a story? Email / Follow us on Twitter: @CannabisHNews / Instagram: @cannabishealthmag


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