New Hope for Seizure Control
While the majority of those with epilepsy are able to obtain seizure control through the use of antiepileptic drugs (AEDs), unfortunately around 35% continue to experience seizure activity despite trying numerous combinations these medications.
This group is considered to have intractable (medication resistant) epilepsy with some diagnosed with catastrophic types of epilepsy, where they suffer recurrent severe and damaging seizures on a daily basis.
Recent research is finding that medications derived from the cannabis plant can significantly reduce the severity and frequency of seizures, especially in children who have certain epilepsy disorders.
What is Medicinal Cannabis?
Marijuana is known by many names including ‘cannabis’ – the Latin name favoured by botanists and pharmaceutical companies.
Cannabinoids are substances in cannabis that act on cells in the body (called cannabinoid receptors) to cause some effect. Two major ingredients include:
- Tetrahydrocannabinol, or THC, which causes the psychoactive effects of ‘getting high’. THC may be harmful for people with epilepsy and put them at increased risk of psychiatric problems such as psychosis
- Cannabidiol, or CBD is found in cannabis stalks and flowers and does not contain mind-altering properties. It has shown some positive effects on certain body systems and may potentially help control seizures.
Unlike recreational marijuana (where usually the crushed leaves are smoked), medicinal cannabis does NOT contain the properties that cause the effect of getting ‘high’ or ‘stoned’. In fact, CBD is thought to have an anti-psychoactive effect that controls or moderates the ‘high’ caused by THC, and may even reduce some of the other negative effects that people can experience from THC, such as anxiety.
For more comprehensive information go to Cannabis 4 Epilepsy
What Recent Research Tells Us
Randomised controlled trials are underway for children and adults using different formulations of cannabidiol (CBD).
There is evidence that cannabis can be helpful in controlling seizures in some cases, especially for difficult to control conditions like Lennox-Gastaut Syndrome (LGS) in children and adults, and Dravet Syndrome in children.
Recently, Australian doctors took part in an international trial, testing cannabidiol in children across the US and Europe with Dravet Syndrome – a complex disorder caused by a rare genetic mutation where children suffer medication-resistant seizures and a high death rate.
In the Trial of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome published in the New England Journal of Medicine in 2017, 120 children or young adults remained on epilepsy medications as well as taking either a cannabidiol liquid/oil (Epidiolex®) or a placebo.
Study details and findings:
- The frequency of seizures was measured over 14 weeks.
- Of those given medicinal cannabis, more than 40% had their seizures halved.
- 5% became seizure free.
- 93% of the treatment group suffered side effects, compared with 74% in the placebo arm. The most common of these were vomiting, fatigue and fever. These side effects were generally not considered serious, although eight patients in the cannabidiol group did drop out of the trial.
In another study Cannabidiol in patients with treatment-resistant epilepsy: an open-label interventional trial published in The Lancet Neurology in 2016, 214 people received oral cannabidiol over a 12-week treatment period.
Study details and findings:
- Patients involved in the study (aged 1–30 years) had severe childhood-onset, treatment-resistant epilepsy and were receiving stable doses of antiepileptic drugs before study entry.
- Results showed a median 36.5% reduction in monthly motor seizures, with the median monthly frequency of motor seizures falling from 30 motor seizures a month at the study’s start to 15.8 over the 12 weeks.
- Unwanted side effects were reported among patients, including drowsiness, decreased appetite, diarrhoea, fatigue and convulsion.
- Most side effects were mild to moderate and short-lived, but 20 patients had serious adverse events related to CBD use –most commonly status epilepticus (seizures that last too long or are too close together).
Despite the anecdotal and early scientific research into cannabis for medical use, anyone using the drug should be aware of the interactions it might have with their medication, as well as information on safe dosage and side effects.
Is Medicinal Cannabis Legally Available in Australia?
In early 2017, the Federal Government loosened laws to allow easier importation of medicinal cannabis from suppliers overseas. Even though domestic cultivation became legal in 2016, an adequate local supply in Australia has yet to be produced.
Medicinal cannabis isn’t approved by the Therapeutic Goods Association (TGA) as a registered good so special approval is needed to take it and it needs to be prescribed by an authorised doctor.
Doctors can apply to become ‘Authorised Prescribers’ of specific non-listed drugs to patients with particular medical conditions. Alternatively, doctors can apply for medicinal cannabis on behalf of their patients through the ‘Special Access Scheme’.
In both cases, doctors need to be able to show that the drug would be of benefit for a particular patient with a particular disease, and the application processes are stringent.
Read here about accessing medicinal cannabis
In addition to a doctor prescribing the treatment, the legal use of marijuana for medical purposes differs by state and territory.
- Federal Government
The Federal Government relaxed medicinal cannabis restrictions in March 2018 and has passed legislation legalising the cultivation of cannabis for medicinal purposes.
Legal by prescription from specialists for use by patients with a range of conditions including MS, epilepsy, cancer, and HIV/AIDS. See Queensland Health for details.
Controlled Access Scheme began in 2017 to allow patients to access unregistered medicinal cannabis. No legislative changes were required in Tasmania. (See Tasmanian Department of Health for details.)
- New South Wales
Legal for use by adults with end-of-life illnesses. In 2017, the state government announced that 40 children in the state with the most severe cases of drug-resistant epilepsy would have access to a cannabis-based treatment under a compassionate access scheme. See NSW Government’s Centre for Medicinal Cannabis Research and Innovation for details.
- People who fall under category 6 illnesses within certain criteria as of 2017 – See ACT Health for details on what this means.
- Western Australia
Legal by prescription from doctors under certain conditions, from November 2016: Misuse of Drugs Act 1981. (See WA Department of Health for details.)
Legal for use by children with severe, treatment-resistant epilepsy. See Health.Vic for details.)
- Northern Territory
The Australian Government Department of Health regulates therapeutic medicines containing cannabinoids through the Therapeutic Goods Administration – access is restricted to patients with certain medical conditions (See NT Government or Department of Health for details).
- South Australia
Legal by prescription from doctors under certain conditions, from November 2016. (See SA Health for details).
Epilepsy Action Australia’s Position
A recent survey conducted by Epilepsy Action Australia revealed that 14% of the 983 people included in the analysis of the survey were currently using cannabis-based products for medicinal purposes. Of these 86% reported that cannabis used for medicinal purposes was helpful in managing their seizures.
Epilepsy Action believes in a thoughtful and thorough pharmacologic and clinical investigation into cannabis to confirm or disprove its safety and antiepileptic potential.
We are at the forefront of advocating for increased research into this vital area of new hope, and assisting through various government and university constituted Boards and Steering Committees.
This includes involvement in studies of people who have personal experience in using medicinal cannabis, such as:
- the PELICAN – Paediatric Epilepsy Lambert Initiative Cannabinoid Analysis being conducted at Sydney University, and
- the Australian Medical Cannabis Observatory Patient Survey in conjunction with United in Compassion.
- Cannabis 4 Epilepsy is a website dedicated to providing people with the most current information available about cannabis for epilepsy.
- MyEpilepsyKey – detailed information about the endocannabinoid system, cannabinoids, cannabis based medicines, the therapeutic use of cannabis in epilepsy, educational videos, books and links to Australian and International patient and advocacy groups
- Epilepsy Action Australia also publishes regular email updates on the progress of all aspects of medicines
- Published by International League Against Epilepsy (ILAE), Epilepsia is a professional journal which includes many articles outlining the arguments for and against using cannabidoil.
- Cannabidiol and medical marijuana for the treatment of epilepsy
- The case for medical marijuana in epilepsy
- The case for assessing cannabidiol in epilepsy
- Cannabidiol: Pharmacology and potential therapeutic role in epilepsy and other neuropsychiatric disorders
- United Patient Group – US based patient group and trusted leader in medical cannabis education for physicians, patients and organisations
- Realm of Caring – US based non-profit foundation that aims to improve lives through research, education, and advocacy with over 25,000 clients throughout the US and internationally, guiding clients in selecting the best products for their needs
- Queensland Medical Cannabis Advisory Group – provides a wide range of information about medicinal cannabis, legislation and advocacy relevant to the Queensland and Australian context
- Cannabis Awareness Tasmania – raising awareness of the issues faced by Tasmanians using medicinal cannabis in the management of epilepsy and other health conditions; lists local events and meetings
- The Medical Cannabis Users Association of Australia is a collective voice to lobby government with a focus on gaining medical access to cannabis in all its forms for the management of health conditions
- Therapeutic Goods Administration Special Access Scheme – information and application forms to apply for the supply of an unapproved therapeutic good for a single patient, on a case-by-case basis
- Understanding Cannabinoids video
- United in Compassion Medicinal Cannabis Symposium 2016 presentation recordings
- Documentary covering the life work of Professor Raphael Mechoulam, considered to be the founding father in the field of cannabinoid research