Cannabis Oil and Children with Epilepsy

Submitted by Carol Ireland

I know there was a great deal of upset, especially amongst ‘epilepsy parents’, following comments made in an ABC Brisbane television news item on the evening of 19 September. The segment covered the story of a father who is pleading with the Queensland Government to allow his 8 year old daughter, who has a regressive neurological disorder that causes chronic multiple seizures, access to medicinal cannabis oil while she is in hospital. Essentially a comment made on behalf of the medical sector caused the upset: “children in particular have presented in hospitals with comas and died from cannabis oil”. Epilepsy Action has done some homework on this topic and I share with you now the body of the letter that I have written to the Australian Medical Association.

“I refer to a news article on ABC television on the evening of 19 September 2016 about medicinal cannabis and children with epilepsy, in particular the Peek family. Comments made by you in this interview have caused anger, concern and in some cases fear within the epilepsy community. I write this letter in the hope that it serves to explain the reasons for this and to seek your assistance in ameliorating the situation.

In my role as CEO and Managing Director of Epilepsy Action Australia I have had significant contact with many families faced with difficult decisions in managing their child’s unrelenting and debilitating seizures as a result of epilepsy. In often dire circumstances, some parents in Australia have been willing to try anything to help reduce the severity and frequency of their child’s seizures and improve their quality of life. Parents, who hoped that their child might respond to cannabis oil, have desperately sought access to any source of ‘medicinal cannabis’ oil or tincture they could find, with the uncomfortable knowledge that it was considered an illicit drug in Australia.

Having presented at the Senate Inquiry into the Regulator of Medicinal Cannabis Bill 2014, sitting on the Steering Committee for the NSW Clinical Trials, acting as a co-investigator in the PELICAN project (NSW and QLD) and serving on the Board of the Lambert Initiative at Sydney University, I fully support legal and medical pathways undertaken to provide medically prescribed, quality controlled medicinal cannabis to people with epilepsy, however quality research and changes to existing laws takes time. Sadly, time unfortunately is not something that many of these children have.

We understand the legal issue: While medicinal cannabis (or marijuana) use was lawful in Australia until the 1950s, cannabis cultivation and use is now illegal in all Australian jurisdictions for any purpose, even though the international drug treaties to which we are party permit the medical and scientific use of drugs whose recreational use is prohibited. Obviously Australians benefit from the medical use of drugs such as morphine, ketamine, cocaine and amphetamine, despite their recreational use being prohibited.

We also understand that human clinical trials for CBD and epilepsy are in early phases, and that while CBD has been examined as a potential anti-epileptic in humans, these early studies have not been followed up with larger and more convincing clinical trials over a longer period.

On the other hand, we understand from social media and other sources that a number of consumers (parents) in Australia are gaining access to medicinal cannabis to treat seizures. Given the catastrophic and debilitating nature of their children’s epilepsy conditions it is not difficult to understand their desperation. These parents report immense improvement in the severity and frequency of their children’s seizures and overall quality of life. However EAA is of course concerned that these consumers may be using home-grown and black market cannabis of uncertain medicinal quality, and these desperate parents are breaking the law.

We understand that there are inherent risks in use of unregulated cannabinoid based products however if there was legal laboratory testing available, the risks of potential contaminates would be avoided and parents would be aware of the cannabinoid ratios and terpene profiles of the product they are using. This would indeed provide sensible and effective medium term risk mitigation.

I want to refer specifically to your comments in the television interview that “children in particular have presented in hospitals with comas and died from cannabis oil”. If there had been a child death in Australia related to cannabinoid intoxication a Coroner’s inquest would have been required to investigate the death. We cannot find any such listing.

I understand that you spoke yesterday to a medicinal cannabis advocate and that you stated that your information came from Colorado. From our research, I must assume that your comments in fact relate to the accidental ingestion of marijuana edibles (usually owned by the parent or other adult) rather than the children being administered medicinal cannabis oil for specific health conditions. This is more an issue of labelling, child proof packaging and adults being responsible in storing their product.

I believe it would be appropriate, and indeed highly appreciated by parents in the epilepsy community, if you would retract the statement made, or at least provide further detail and accurate context for your statement. I offer the assistance of my organisation to assist in any way possible with education and support in this situation.

Finally, I would like to refer you to an article in the Medical Journal of Australia by David G Pennington (Med J Aust 2015; 202 (2): 74-75) titled “Australia is behind the times on the medical use of cannabis”. It makes for interesting reading on this difficult topic.”