What we Learned: Navigating Medicinal Cannabis - Epilepsy Queensland

What we Learned: Navigating Medical Cannabis

According to Lisa Todd of Epilepsy Action Australia, demand from consumers drove the organisation to take a deep-dive into the world of medicinal cannabis.

“With the help of anti-seizure medication, many people with epilepsy can live full and successful lives. However, 30 to 35% of people with epilepsy will not respond to those conventional medications… recurrent daily seizures are a devastating fact of life for many of the families that we work with.

“Our journey started about 2014 – any form of cannabis was illegal at that point in time, so we knew little about the cannabinoids or the therapeutic benefits. Many people were going to the internet using Dr. Google to seek information, but there was no consistency or accuracy, with most of the access to medical cannabis for desperate people by mail-order, trips overseas, the grower ‘make your own oil’ approach and, of course, the illicit market.

“Many people were unaware of the potential risks they were taking – they didn’t know where or how the cannabis was actually being grown, nor how it was extracted. There was no way to test the product to check the ratios of CBD and THC nor for the heavy metals and pesticides. At that time, there was little information about the potential drug-to-drug interactions…

“People were too afraid to approach their doctors and ask questions, so they were giving it without the knowledge of the prescribing doctor of the anti-seizure medication.

“It’s really important to understand that medical cannabis is not just one medication. The cannabis plant contains more than 400 molecules. Approximately 100 of these are cannabinoids, but it also contains numerous other elements including terpenoids, flavonoids, Omega-3 and 6 fatty acids – the combination of those compounds change depending upon where and how it’s grown. It takes a significant amount of resources to be able to grow a consistent pharmaceutical grade product with little variation between batches.”

Epilepsy Action Australia began speaking with families, meeting with health ministers and premiers and meeting people like Barry Lambert who donated $33 million gift to Sydney University to create the Lambert Initiative for Cannabinoid Therapeutics.

“In order to understand what was happening in the epilepsy community, we asked our clients about medical cannabis. We had 1200 responses in a 10-day period. Working with the team at the Lambert Initiative, the data was analysed and published.

Cannabis for Epilepsy Website

“In 2019. We launched the c4e website – which is ‘cannabis for epilepsy’ – an online resource that could cater for the increased demand of people seeking reliable introductory information about medical cannabis and epilepsy.

CanGuide™ is the next iteration covering a range of other health conditions.

“The aim of CanGuide™ is to provide a reliable and trusted independent source of information and support about medical cannabis for healthcare professionals and consumers.

“In collaboration with research and industry colleagues, we’ve developed some useful resources and the knowledgeable base that can assist both clients and healthcare practitioners in navigating this emerging treatment area.

“We’re putting research articles up there so people have the evidence if they want to have the discussions with the doctor. They can download and take the research with them, so the doctor doesn’t have to go searching for it.

“When we get questions from doctors, it’s usually around the prescribing and the drug-to-drug interactions with anti-seizure medications.”

As of November 2023:

On the Australian and New Zealand Clinical Trials Registry (ANZCTR) there are 82 medical cannabis studies listed in various stages of completion.

Lisa Todd Epilepsy Action Australia Medicinal Cannabis Thinking Outside the Box Presentation

Prescribing pathways:

“Any GP can now prescribe medicinal cannabis and there is a wealth of information on the TGA Medicinal Cannabis Hub.

“There are effectively three pathways for medical cannabis prescribers:

  1. Authorised Prescribers can prescribe for multiple patients with the same condition and they only have to report every six months. Currently there are 2312 unique authorised prescribers in Australia.
  2. The special access scheme is for prescribing unapproved medications. Special Access Scheme Category A (SAS Cat A) is for seriously ill patients. Their doctor can prescribe medicinal cannabis and then notify the TGA within 28 days.
  3. Special Access Scheme Category B (SAS Cat B) is the primary pathway for patients to access medical cannabis. The prescribing doctor submits an application on your behalf, once the approval letter is received the medication can be prescribed. The turnaround of approvals is 2-5 days, however it is not unusual for this to occur within 24 hours or less. In 2016, the first application took 16 months. Paediatric patients require a letter of support from the treating specialist before the application will be approved, if requested by a GP.

“We do not profess to be experts in medical cannabis. But we have been listening carefully to our consumers living with medication resistant epilepsy, who expressed interest in medical cannabis and also expressed concern about accessing it within the framework of the Australian legal system and securing proper medical supervision of the administration of such products.”

Epilepsy Queensland