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

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A new report has revealed the impact of medical cannabis on patients with severe epilepsy

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.”

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Epilepsy

CBGA may be ‘more potent’ than CBD against seizures in Dravet syndrome

Dr Lyndsey Anderson said there is more to explore when it comes to creating more treatment options for Dravet syndrome.

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Dravet Syndrome: A row of test tubes containing CBGA oil with a doctors white gloved hand holding one up to the light

Scientists say they have found the ‘Mother of all cannabinoids’ which may help to reduce seizures in Dravet syndrome.

A new study on mice from the University of Sydney found that three acidic cannabinoids found in cannabis reduced seizures in Dravet syndrome, an intractable form of childhood epilepsy.

The three cannabinoids are cannabigerolic acid (CBGA), cannabidivarinic acid (CBDVA), cannabigerovarinic acid (CBGVA). All three but CBGA in particular “may contribute to the effects of cannabis-based products in childhood epilepsy” noted the researchers and were found to potentially have ‘anticonvulsant properties.”

The study marks the first time that three acidic cannabinoids were found to potentially help reduce seizures for Dravet syndrome.

Speaking with Cannabis Health News, the lead author of the study, Dr Lyndsey Anderson, said: “We found that CBGA exhibited both anticonvulsant and pro-convulsant effects. CBGA was more potent than CBD against febrile seizures in a mouse model of Dravet syndrome. We also found that a combination of CBGA and clobazam was more effective than either treatment alone. Additionally, we found that CBGA was anticonvulsant in the maximal electroshock acute seizure model, a model for generalized tonic-clonic seizures.”

She added: “CBGA did, however, present some proconvulsant effects. The frequency of spontaneous seizures in the mouse model of Dravet syndrome was increased with a high dose of CBGA. Also, CBGA was proconvulsant in the 6-Hz acute seizure model, a model of focal, psychomotor seizures.”

Although CBGA shows promise, Dr Anderson also stressed that it needs more research before it can replace CBD. She cautioned that Dravet syndrome patients may still need to proceed with caution.

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“Artisanal cannabis-based products are believed to reduce seizures in Dravet syndrome patients,” she said. “As these oils contain rare cannabinoids like CBGA, it is possible CBGA then contributes to the anticonvulsant effects of these artisanal cannabis oils. However, there were proconvulsant effects observed with CBGA, suggesting that Dravet syndrome patients may need to proceed with caution. The proconvulsant liability of CBGA would need to be addressed before it replaced CBD as an anticonvulsant.”

What is CBGA?

Sometimes referred to as ‘the mother of all cannabinoids,’ CBGA is the precursor molecule to many different cannabinioids including CBD and THC. It is thought to help some diseases such as colon cancer, metabolic disease and cardiovascular disease. It is a non-intoxicating cannabinoid much like CBD.

Dr Anderson explains that more research is needed to explain how the three cannabinoids work together.

“We don’t know how they work together yet,” she said. “We found that CBGA, CBDVA and CBGVA were all individually anticonvulsant against thermally induced seizures in the mouse model of Dravet syndrome. We did not investigate whether a combination of these three cannabinoids would result in a greater anticonvulsant effect than either cannabinoid alone. Future work will definitely explore this possibility.”  

CBGA future research

This isn’t the end of the research into CBGA for Dravet Syndrome. Dr Anderson said there is more to explore when it comes to creating more treatment options for Dravet syndrome.

 

She said: “Next on the horizon for this research is to explore whether the anticonvulsant properties of CBDVA and CBGVA translate to other seizure types including spontaneous seizures in the mouse model of Dravet syndrome. Additionally, we have extensively interrogated the anticonvulsant potential of individual cannabinoids and identified ten with anticonvulsant properties.”

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“We are now interested in investigating what happens when we combine these anticonvulsant properties. It remains an open possibility that greater anticonvulsant effects are achieved when the cannabinoids are administered in combination.”

The study was recently published in the British Journal of Pharmacology (DOI: 10.1111/bph.15661)

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Industry

New course offers expert advice on medical cannabis from doctors and patients

The Sativa Learning course includes insight from doctors and patients

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A new online course on prescribing medical cannabis will offer a detailed insight into the industry from both clinicians and patients. Cannabis Health speaks to course creator and CEO Ryan McCreanor.

Sativa Learning and the Medical Cannabis Clinicians Society (MCCS) have partnered to offer a new course on the prescribing of medical cannabis in the UK.

It will cover a comprehensive list of topics around cannabis as a medicine such as clinical evidence for medical cannabis, the practicalities of prescribing and side effects and contraindications.

The course, which will run online only, will also offer a variety of clinical and patient stories on a select list of conditions such as chronic pain, fibromyalgia, epilepsy, paediatric epilepsy, anxiety and post-traumatic stress disorder (PTSD).

Course: An advert for Always Pure Organics

Sativa Learning has already launched a successful online CBD course covering everything from the science behind the cannabinoid to UK regulations.

Ryan got the idea following his return from Canada to his hometown of Northern Ireland where he struggled to find decent quality CBD products. He started his career as a toxicology scientist before working for the Canadian government as an educator and trainer post legalisation in 2018.

“This was a way to bring a level of legitimacy to the industry by developing an accredited expert-led cannabis course,” said Ryan.

“The idea for the platform is that we want to provide education for all avenues of the cannabis industry. The CBD industry was a good place to start as I had a good level of knowledge myself so I put together a lot of the educational content myself.”

He continued: “I wanted to bring in real experts so we partnered with Professor Barnes and Hannah Deacon. All future courses will be CPD-credited. A lot of medical professionals will have to gain a certain amount of CPD points per year so they can take our course and feel comfortable that it is managed to a high started of further learning.”

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As well as Hannah Deacon and Prof Barnes, the course also includes expert panels from Dr Dani Gordon who will speak about cannabis and oncology. Other classes will include Dr Elie Okirie speaking about epilepsy and Dr Evan Lewis on paediatric epilepsy. When it comes to the syllabus, the MCCS has put together the content for the cannabis course.

Course: The two creators of the cannabis course standing next to each other looking into the camera

Sativa Learning founder, Ryan McCreanor and Professor Mike Barnes

Ryan explained that they selected the conditions they included carefully to give a broad overview of common conditions.

He said: “We picked out 10 of the most common conditions for which cannabis is prescribed. We have fibromyalgia, chronic pain, cancer pain and women’s health issues. The doctors explain how they prescribe for that condition and have a number of patients who speak on camera about their experience.”

 

Expert-led courses

When it comes to panel discussions, courses or expert lead videos, it can often feel as if patients are forgotten. Ryan highlighted that this is a key part of the course.

“Not only do we have the doctors educating on cannabis but we have a follow-up with a patient talking about their experience,” he said.

“They discuss what life was like for them before medical cannabis, what their prescription is like and how this changed things for them.

“The industry should be all about the patients so we want to make sure that their voices are heard.”

The course will be fully online, with an option to learn as you go and break and save your progress whenever you are ready.  At the end of the course, there will be an exam that will give you a presentation upon a passing grade. The exam is part of the CPD accreditation.

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Ryan added: “Some people have blasted through our CBD course in one day where they just sit down and get through it all which can take up to six hours depending on your existing level of knowledge. This course is going to be quite a bit longer but you can do it all in one day or you could do a few hours a night for six months.”

The platform will be available for anyone who wants to learn about cannabis although Ryan explained that it may be more suited towards industry professionals.

He concluded: “There are no barriers to entry. The course is going to be available for whoever wants to learn about cannabis medicine. The language we use is heavily targeted towards the medical professionals as it is aimed at that audience to teach medical professionals about the basics of prescribing.”

Access the course here

Read more: The importance of peer to peer learning in medical cannabis education

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Epilepsy

CBD-enriched cannabis oil may reduce seizures in children with West syndrome

Four of the eight children had less than half the seizures they had before the trial.

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Seizures: A black and blue x-ray of a brain on a black background

A new study on CBD-enriched cannabis oil for seizures involving eight children revealed that electroencephalogram (EEG) abnormalities improved by 20 to 80 percent.

The study on seizures, published online, examines if CBD-enriched cannabis oil used as an add-on therapy could help children with condition that causes spasms. It found that four of the eight children in the trial had less than half the seizures they had before the trial.

The researchers reviewed the experiences of eight West syndrome children who were refractory to anti-seizure medications between May 2020 and March 2021. The children were aged between sixteen to twenty-two months and each received a dose of 25:1 CBD to THC as an add-on therapy.

Seizure decrease

The participants record a mean of 63 seizures per day with the lower rate recorded as 31 and the higher amount recorded as 79.

At the follow-up appointment, two of the patients reported a 75 percent to 99 percent decrease in frequency. A further two children recorded a 50 percent decrease while one patient did not experience any changes at all.

The authors wrote: “The index of EEG (electroencephalogram) abnormalities improved between 20 per cent and 80 per cent in seven patients concurrently with the reduction in seizures.”

“Tolerability among those patients experiencing fewer seizures was good and, overall, “adverse effects were mild and transient.”

Epilepsy seizures

West syndrome is a form of epilepsy. According to Epilepsy Action UK, West syndrome happens in about one in every 2,5000 to 3000 children. This means that about 350 to 400 children will develop the syndrome each year in the UK.

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In 9 out of every 10 children, the first seizures will take place in the first year between three to eight months of age. They may happen in clusters or runs rather than singularly. The children may go on to develop learning difficulties as a result of the syndrome.

Earlier studies

A new study published this month shows that CBD transdermal gel may help to reduce seizures and improve children’s quality of life.

The study, Safety and Tolerability of Transdermal Cannabidiol Gel in Children With Developmental and Epileptic Encephalopathies, was conducted in Australia and New Zealand. It involved 40 children with Developmental And Epileptic Encephalopathies (DEE). The authors noted that the DEEs were the most severe type of epilepsy typically beginning in childhood.

The non-randomised, clinical trial involved CBD gel being applied twice a day for six and a half months on children aged three to eighteen. The gel had a CBD content of 125 to 500 mg.

The researchers found that the gel helped in response to facial impaired awareness seizures potentially reducing them to 44.5 percent. It also helped to reduce tonic-clonic seizures where the muscles violently contract by 22.5 percent. Overall, the seizures in 33 participants were reduced by 43.5 percent.

The children also recorded improvements in alertness, alongside the seizure reduction.

Read More: Study on CBD gel shows potentially positive effect seizures

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Cannabis Health is a journalist-led news site. Any views expressed by interviewees or commentators do not reflect our own. All content on this site is intended for educational purposes, please seek professional medical advice if you are concerned about any of the issues raised.

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