What's the issue?
Cannabis-based treatments for epilepsy have been in the news a lot recently. When people talk about cannabis based treatments for epilepsy they can mean a lot of different things.
To most people cannabis is an illegal drug that is taken recreationally to make the user feel ‘high’.
Cannabis contains hundreds of different components. The most well-known component is THC or tetrahydrocannabinol. This is the part that makes people feel ‘high’.
CBD or cannabidiol is another component found in cannabis. Recent studies into CBD-based treatments have shown promising results for reducing seizures in children with severe epilepsies such as Dravet syndrome and Lennox-Gastaut.
There have also been stories in the media about unregulated cannabis oil containing both THC and CBD. There is anecdotal evidence of cannabis oil containing both THC and CBD reducing seizures in some children with rare and severe epilepsies.
It is important to remember that there is currently very little scientific evidence to support cannabis oil containing both THC and CBD as a treatment for epilepsy.
It is vital that you talk to your doctor or health professional before making any changes to your epilepsy medication.
What we are doing
Epilepsy Action has looked long and hard at the available scientific evidence around cannabis based treatments for epilepsy. We also listened to people who believe cannabis based treatments have reduced their seizures.
We asked our clinical experts for their advice and opinions of clinical experts in epilepsy. We asked them for their opinions on the available evidence and their experiences of patients who may have used cannabis based treatments.
We have put together four statements to explain our position on cannabis based treatments for epilepsy. We have based them on the available evidence and the views of clinical experts.
These statements may change as more research and evidence becomes available. We want to see more scientific research and clinical trials of cannabis based treatments to ensure any potential new treatments are safe and effective.
Statement 1 - CBD-based medicines (licensed medicinal cannabis)
Epilepsy Action is encouraged by the recent research findings into the use of Epidiolex in the treatment of some rare epilepsies. We hope licence applications for its use are successful. We would also like to see it become an additional treatment option for clinicians treating people with challenging epilepsies.
We do note however it is not a magic bullet and is unlikely to be effective for all people with epilepsy.
Epilepsy Action encourages more research into CBD-based medicines in other hard-to-treat epilepsies.
Statement 2 - CBD-based oils (unlicensed medicinal cannabis, CBD based)
At Epilepsy Action, we hear from some people with epilepsy that CBD-based oils have been effective in helping reduce their seizures.
Epilepsy Action believes individuals and their parents or carers have to make their own decision as to whether or not to use CBD-based oils. We strongly encourage any that do to inform their health professional. It is not clear how safe or effective CBD-based oils are in treating epilepsy and Epilepsy Action welcomes more research into this area.
Unlicensed preparations of CBD-based oil may not be produced to the same standards as licenced CBD-based medicines. This could affect the purity and CBD content of particular preparations. CBD may interact with a person’s epilepsy medicine. This could result in increased side-effects or increased seizures.
Epilepsy Action advises that people with epilepsy should not stop taking any conventional medicines, whatever the impact of taking a CBD-based oil, without seeking advice from their clinician.
Statement 3 - High-THC treatments (unlicensed medicinal cannabis, THC based)
Epilepsy Action does not know whether or not high-THC treatments should be used in the treatment of epilepsy. They are unlicensed and there is a serious lack of evidence about whether high-THC treatments are safe or effective in treating epilepsy. There is, however, evidence that THC can make seizures worse and cause other serious side-effects, such as psychosis.
Epilepsy Action believes clinicians should be able to request a licence for the use of high-THC treatments in individual cases. This would be where there are grounds to believe it may be beneficial and where treatment follows strict research guidelines overseen by a suitably qualified and experienced epilepsy clinician.
Epilepsy Action encourages more research to understand how safe and effective THC-based treatments are in treating epilepsy.
Statement 4 – Legalisation of cannabis
Epilepsy Action does not have a position in relation to the legalisation of cannabis. We believe this is a wider political debate for the general public, politicians and government
Epilepsy Action does not believe it is appropriate for us as an organisation to take a position on the legality of cannabis more generally.
How you can get involved
As a member-led organisation, we want to hear from you! Do you or someone you know use cannabis based treatments for their epilepsy? If it’s positive, negative or somewhere in between we want to hear your views. Please email firstname.lastname@example.org in full confidentiality.