Childhood epilepsy is a severe condition that can cause recurrent seizures and developmental delays. Cannabis extracts have been gaining popularity as an alternative treatment to conventional anti-convulsant drugs to help control seizures. A recent study, co-ordinated by Anastasia Suraev from the Lambert Initiative for Cannabinoid Therapeutics at the University of Sydney, examined the experiences of parents that had used illicit cannabis extracts to treat their child’s epilepsy and found that most of these parents reported positive effects. This important research highlights the need for more in-depth trials to assess the potential for the use of cannabinoids in the effective treatment of childhood epilepsy as well as the legal, bureaucratic and cost issues faced by families relying on these extracts.
Childhood epilepsy can be a severe and chronic condition, causing recurrent seizures and developmental delays. These seizures can last anywhere from seconds to hours and can occur suddenly and out of the blue, without a specific trigger. For more severe cases, this can result in multiple seizures a day and, for some of these children, the medication that they are prescribed just aren’t working. Treatment-resistant epilepsy affects 20-30% of patients and many of these children face adverse side-effects from the anti-convulsant drugs they are given. Seizures are just one of the many symptoms associated with this condition. Also, children can be faced with developmental delays as their normal developmental processes are disrupted, often resulting in intellectual disabilities as well as behavioural and psychological problems.
Limited options exist for parents who have children with treatment-resistant epilepsy, and many of them, unable to watch their children suffer, have been forced to seek alternative therapies to help reduce the frequency of the seizures. The use of artisanal unregistered cannabis products for treatment-resistant epilepsy has recently gained some traction in Australia, North America and the UK and is becoming more and more widespread. The information available suggests that this could be a viable option with several studies finding that cannabis extracts have anti-convulsant potential in childhood epilepsy.
However, legal cannabis-based products are still highly restricted in some countries and so parents are forced to source illicit cannabis extracts for their children.
For example, in Australia, a 2017 nationwide survey of the parents of 389 children with epilepsy showed that 13% of parents had tried or were already using illicitly sourced cannabis extracts to help treat their child’s epilepsy symptoms. The parents acknowledged that the main reasons for this were to manage treatment-resistant seizures and to help reduce some of the side effects that their children were experiencing from the anti-epileptic drugs they had been prescribed by healthcare professionals. Aside from the legal implications that sourcing illicit cannabis extracts can have, there were also concerns surrounding the quality of the product. The composition of these cannabis products is typically unknown, and they have not been through the scrutiny that legal medications would have gone through to check for their quality and safety.
The ‘Paediatric Epilepsy Lambert Initiative Cannabinoid Analysis’ (PELICAN) study was carried out by a team of psychologists and analytical chemists led by Professor Iain McGregor at the University of Sydney. The project, coordinated by Anastasia Suraev, a Clinical Research Associate and PhD candidate at the Lambert Initiative for Cannabinoid Therapeutics, examined the experiences of parents using cannabis extracts to treat their child with epilepsy, as well as interviews with families who have tried and stopped using medicinal cannabis and some families who had never used cannabis-derived treatments. In addition, the research team investigated the composition of the cannabis extracts that were available on the black market.
Cannabis extracts as an alternative medicine
Between June 2016 and December 2017, the parents or guardians of 65 children in Australia with severe epilepsy were interviewed, including parents who had turned to illicit cannabis extracts and those who had not. The researchers found that cannabis extracts were more likely to be used by families that reported their child as treatment-resistant or having had experienced intolerable side effects from the medication they were receiving. Many of these parents found the use of medicinal cannabis extremely effective in helping to control or reduce the symptoms of severe epilepsy.
One family, for example, reported that their child had been seizure-free for 12 months and over half the families using medicinal cannabis were able to reduce their use of anti-epileptic drugs, with some families reporting that they had stopped using them completely. Aside from reducing the frequency of seizures, many of the families reported other benefits associated with cannabis extracts including improved cognition, emotional well-being, and physical activity.
Legal implications were the main concern identified for all the families that were interviewed, including those that have never tried medicinal cannabis treatments. This problem has persisted, even after legislative changes in Australia in 2016 that allow people to access medicinal cannabis on prescription from their doctor. The problem is that these prescriptions are costly and on the black market the cannabis products are significantly cheaper. Although medicinal cannabis prices have dropped in recent years, currently a prescription will set you back roughly AUD $40 per day (or $1200 per month) which prohibits some families from being able to access the medicine.
At present, there is only one medicinal cannabis product that has been registered for treating severe epilepsy: Epidiolex (European spelling: Epidyolex). However, this medicine is not subsidised by the Pharmaceutical Benefits Scheme (PBS) in Australia and as such families must pay AUD $1800 a bottle out of pocket for this potentially life-saving medicine.
The huge financial cost along with the doctor’s lack of knowledge in using medicinal cannabis as a potential treatment has resulted in the majority of families that have opted to use cannabis extracts doing so by purchasing it from the black market. The researchers highlight that while most families said it was easy to obtain cannabis extracts on the black market, they were worried about the supply and they would prefer to obtain cannabis-based products from a pharmacy, like any other medicine. By legitimising the use of these products, it would not only make them more accessible, but it would also remove the stigma and judgement from healthcare providers, which would in turn provide more support for the families.
Illicit cannabis contains low levels of CBD
Another main concern of the families using cannabis extracts was the composition and quality of the products they were purchasing. The researchers found that there was high variability in the cannabinoid content of the products that these families were using but no significant difference between the cannabinoid content and whether the product was considered effective or ineffective. By analysing the contents of the cannabis extracts that the families used, the researchers found that they generally contained low doses of cannabidiol (CBD), which is a compound that has been successfully used in clinical trials. This information was contrary to what the parents believed. The cannabis extracts contained several other compounds, including the main psychoactive component in cannabis – tetrahydrocannabinol (THC), varying amounts of which were found in most of the samples tested. This discovery highlights the need for access to reliable cannabis products of known composition and quality, and for further research to establish if other cannabinoids, in addition to CBD, may be effective in reducing seizures.
This research has gained a lot of attention in Australia and has been featured by several media outlets such as ABC News, The Sydney Morning Herald and The Australian. The researchers have brought to light the plight of families who have resorted to using illicit cannabis to treat their child’s epilepsy, and demonstrated the huge need for further research to understand how cannabis products can help manage treatment-resistant childhood epilepsy. Notably, the Australian Government is currently expediting review of Epidiolex for subsidy under the PBS. Future research needs to examine which cannabinoids have the most positive effect on managing symptoms and how these could be used alone, or in combination with anti-epileptic drugs to improve the quality of life for these children that are suffering from treatment-resistant epilepsy.
- Suraev A, Lintzeris N, Stuart J, Kevin RC, Blackburn R, Richards E, Arnold JC, Ireland C, Todd L, Allsop DJ & McGregor IS. (2018). Composition and Use of Cannabis Extracts for Childhood Epilepsy in the Australian Community. Sci Rep, 8:10154. https://www.nature.com/articles/s41598-018-28127-0
The Lambert Initiative for Cannabinoid Therapeutics, a philanthropically-funded, non-for-profit medicinal cannabis research centre at the University of Sydney.
The research team gratefully acknowledge the contribution of all of the families in the original study who gave up their time to participate. They would also like to thank the Centre for Clinical Trials in Rare Neurodevelopmental Disorders (CCTRND) and Children’s Health Queensland Neurosciences Department, Queensland, Australia; Epilepsy Action Australia; and Epilepsy Queensland for their support and assistance with recruitment in the original study. They also acknowledge the important contribution of the late Associate Professor David Allsop to the co-creation of the PELICAN study.
Anastasia Suraev is a Clinical Research Associate and PhD candidate at the Lambert Initiative for Cannabinoid Therapeutics at the University of Sydney. Her research investigates the clinical applications of cannabinoid-based therapies in chronic and refractory health conditions, with a focus on epilepsy and sleep disorders.
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