Medical Cannabis System So Tricky, 'Doctor Google' Used By Epilepsy Patients
Australian doctors lack knowledge about medical cannabis, a leading epilepsy group has said, as it launches a new tool to educate those with the condition about how marijuana could help in their treatment.
While medical cannabis is legal for use in Australia, not all doctors are willing to prescribe it, and many products are not approved. Those who want to access it have complained about red tape, complicated access schemes, and doctors who simply do not know enough about the process to prescribe the medication.
Now, a new cannabis-focused website has launched to give epilepsy patients information about what the drug does, how to access it, and how it could help them.
Sydney University's Lambert Initiative for Cannabinoid Therapeutics said medical cannabis is "much more complicated" to access than most other medicines, and most doctors don't feel confident to prescribe it.
A 2018 study from the Lambert Initiative found 79 percent of doctors did not understand the current regulatory process -- which leads to a "tiny" number of patients able to access it.
This is one of the factors behind the launch of C4E.com.au, the new website from Epilepsy Action Australia. It aims to give patients legitimate and verified information about how cannabis might help their condition, while avoiding misinformation about the drug.
It also aims to help doctors get their heads around the complicated issue.
“Medicinal cannabis can be life-changing but it is not a ‘silver bullet’ and it is not advisable for people or carers to consult ‘Doctor Google’ for something so important," said Carol Ireland, CEO of Epilepsy Action Australia.
Cannabis has been shown in some studies to assist those experiencing epilepsy, with epilepsy one of a short list of conditions for which special access to unapproved cannabis medication can be sought.
Emma, from Sydney, is one of an estimated 250,000 Australians living with epilepsy. She has wanted the ability to access medical cannabis to treat her seizures, but said it was difficult to find information about how to get it, and was forced to rely on word-of-mouth or social media.
"It wasn't easy to find out, it was just the help of family and my epilepsy carers," she told 10 daily.
"There's a stack of information out there but you have to be really careful where you get it from. I worry about people," added her mum, Diane.
Ireland told 10 daily Australia's interest in medicinal cannabis was inspired by international use.
"About five years ago, we started hearing from patients about their wish to use medicinal cannabis, after hearing success stories from overseas about it helping people who were having hundreds of seizures a day," she said.
"We had desperate parents asking, 'How can I get hold of it?'"
The TGA ruled in a 2017 guidance paper that medicinal cannabis is only recommended as an "adjunctive treatment" for epilepsy -- or, only in addition to existing epilepsy drugs.
"There's still not a lot of doctors who want to prescribe it, and not all patients want to try cannabis, but many people do," Ireland said.
"The first point of resistance is finding a doctor who understands the system, and wants to prescribe. There are hoops to go through, but without a doubt, this has improved in recent years."
Epilepsy Action Australia and some neurologists say cannabis can have benefits for 'intractable' medication resistant epilepsy, which affects one-third of people with the condition.
The C4E website -- 'cannabis for epilepsy' -- links patients with "trusted information" on the topic, such as published academic articles, information on driving and everyday living, lectures, quizzes and findings from clinical research.
Ireland said the website's aim was not to advocate for greater access to the drug, or for more people to use it, but to simply educate people about their options if they want to know more.
"We wanted to show, in very simple terms, the evidence about cannabinoids and seizures, and give you information before you talk to a doctor," she said.
"'Advocating' is too strong... this website is seeking to be balanced. Not all the evidence is in, but there's some, and we know there's a need for more."
"I think the more we can publicise and get people to deal with the right websites, it's good. We were lucky, we knew about the right groups, but it's you don't want to be guided through the wrong channels," Emma's mum Diane said.
Emma has been given approval to access cannabis, but her family is still waiting for the "extraordinarily dear" cost -- which can be up to $50,000 per year for some families -- to go down before they start using it.
"We just want people to have the right to try," Ireland said.
"We don't believe for a second it will help everyone, but people want the right to try."