‘Life-changing’ impact of medical cannabis in epilepsy patients revealed

A new report has revealed the ‘remarkable’ and ‘life-changing’ impact of medical cannabis on ten patients with severe epilepsy.

The study, published by Drug Science, followed ten patients, aged two to 48-years-old, with intractable, childhood onset epilepsies.

It found that patients saw an average 97 percent reduction in seizures following treatment with cannabis medicines. 

Four patients, who were prescribed Epidiolex, a licensed cannabis medicine in the UK, did not see any improvement in their condition until they were given the whole plant extract – suggesting a combination of CBD and THC based products was crucial in effectively managing the condition. 

The carers of patients provided details of their age, diagnosis, previous and current antiepileptic drugs and number of seizures before and after taking cannabis based medicines, through the campaign group End our Pain. This data was then analysed by researchers at Drug Science.

As well as the clear improvement in their condition, the report also highlights the staggering financial barriers facing patients, with the average monthly cost of cannabis medicines more than £1,800.

Those families included in the study spend more than £20,000 a year on their children’s medicines –  almost five times the price of the same medication in the Netherlands.

Lead author Rayyan Zafar told Cannabis Health: “The aim was to provide a scientific platform to convey the impact that medical cannabis treatment has had on children suffering from various forms of severe epilepsies. We wanted to assess primarily what the effects were on their seizure frequency as well as highlighting the extremely high costs of private prescriptions.”

He continued: “We saw a dramatic 97 percent average reduction across the cohort in seizure frequency following treatment with medical cannabis. These effects were seen using whole-plant extracts which combine THC and CBD therapy, which is not currently a National Institute for Health and Care Excellence (NICE) recommended treatment. 

“Surprisingly the four patients that had the NICE recommended Epidiolex did not improve on this longer term and only saw beneficial effects once whole plant extracts were taken.”

 Researchers conclude that the impact of cannabis medicines on these patients was ‘remarkable’ and often ‘life-changing’ and argue that the paper provides important evidence that should be taken into account, in addition to RCTs.

Dr Anne Katrin Schlag, head of research at Drug Science, said: “We think our findings make a very strong case for prescribing these medicines to this group of children and young adults who have been clearly shown to benefit from it. 

“We are currently following up with a subsection of patients who for cost reasons, had to discontinue their medications, leading to their seizures returning, adding further validity to the current findings.

“We hope our report will contribute to make access to these medicines easier, and to allow for medicinal cannabis to become accessible on the NHS for these patients who are shown to benefit from it.”

Although randomised controlled trials (RTCs) are recommended to provide clinical evidence on the efficacy of unlicensed cannabis medicines, it would be ‘extremely difficult’ to conduct these in very ill patients, according to the report.

Those already taking cannabis medicines would be required to undergo a ‘wash out’ period to come off their current medication and run the risk of being given a placebo, which parents have warned could put their lives at risk.

“Whilst the paper has been received with great interest, we expect responses will also call for greater sample sizes, which we are in the process of doing, and the application of RCTs,” added Zafar and Dr Schlag.

“However, RCTs in these children suffering from severe epilepsies would be unethical and highly costly.”

Campaigner Hannah Deacon, whose son Alfie Dingley is one of a handful of patients to have an NHS prescription for medical cannabis – and who continues to support others to get access – welcomed the report, saying it must be accepted as evidence.

“It is clear from this study that whilst some doctors may believe medical cannabis is something to be frightened of, it is quite the contrary. These patients are having reduced seizures – sometimes none for days on end – and a hugely improved quality of life. This is evidence and must be accepted as such,” she said.

“The families who spend every day raising money to keep their children safe are in fact saving the NHS huge sums of money every day by keeping their children safe at home. I am tired of seeing this medicine blocked every day by different people who should be putting patients and their wellbeing at the centre of everything they do. 

“It is time that we see safe access for these families and the many millions more in the UK.”

Professor Mike Barnes, who obtained the first license to prescribe medical cannabis in the UK, added that it was time others in the profession ‘embraced’ cannabis as a medicine. 

He commented: “This paper shows the real efficacy of cannabis for children with epilepsy. Isn’t it now time for the paediatric neurology community to embrace this medicine and start to prescribe rather than hounding those that do.”