As many as nine out of 10 people who use medical cannabis to treat epilepsy find it more successful than other medical treatments, a new survey shows.
Desperate carers and people suffering chronic pain have been turning to the black market to source the medicinal cannabis.
Despite federal laws legalising the harvesting of the drug, some doctors feel uncomfortable administering it because there isn't enough clinical information yet available. States continue to run patient trials with limited access to the drug.
Now, a study of self-reported experiences of 976 people ranging from adults suffering with epilepsy, to parents of children with the condition, showed that 14 percent of people surveyed use cannabis products as a last resort to manage seizures.
Of those surveyed who use cannabis for the condition, nine in ten adults and 71 percent of parents caring for their children with the condition found it a more successful treatment than other medications.
Lead author of the survey, Anastasia Suraev from The Lambert Initiative at the University of Sydney told The Huffington Post Australia people reported resorting to medicinal cannabis to manage treatment-resistant epilepsy and to reduce side effects that had they had experienced on conventional medicines.
Suraev also told HuffPost Australia that while the findings aren't yet backed by medical proof, the survey highlights the need to draw attention to the numbers of people using illicit cannabis as treatment and to create an open conversation between consumers and health professionals.
"Generally speaking, around 70 percent of people with epilepsy will respond quite well to conventional antiepileptic medicine. The other 25 to 30 percent [of people] have uncontrolled epilepsy who have tried many different drugs or are on a multitude of different drugs at the same time and are experiencing a lot of intolerable side effects," she said.
"[Medicinal cannabis] is for the people who have not had success with the conventional methods."
"We can't say for certain that this efficacy is correct because it's an online, anonymous survey, yet we can't ignore the fact that so many people are using it and are reporting significant benefits from it, so we have to look into it further, it can't be ignored," she said.
"We want to bring light to this, to say people in Australia are using it and it's important that people feel comfortable talking about it with their doctors, particularly if they are going to make changes to their treatments without seeking appropriate medical advice -- which could aggravate their condition."
CEO of Epilepsy Action Australia and co-author of the study, Carol Ireland also said the findings show there needs to be greater emphasis in Australia on the education of consumers and medical practitioners about the use of cannabis to treat conditions such as epilepsy.
"This highlights a growing need to educate consumers and health professionals on the use of cannabis by people with epilepsy, and to provide safe and timely access to cannabinoid medicine in order to lessen people's reliance on illicit black market products"
The findings come after Victoria became the first state in Australia to announce it will legalise the use of medical cannabis for exceptional circumstances such as epileptic children, as well as calls from Labor leader Bill Shorten to speed up the rollout of products to patients in need.
According to Suraev, some findings of the survey did suggest some adult respondents were using medicinal cannabis for conditions and issues other than epilepsy, but due to the current lack of medical proof to support that, the focus should be on increasing the numbers of clinical studies while also educating those who are most affected.
"I think we do need more systematic clinical studies which are ongoing and will help us to better understand that cannabis should play a role in the treatment of epilepsy, which is something we need to put a lot of focus on," she said.
"Moving forward, I think the clinical evidence is really what is key to help clinicians feel more comfortable in prescribing an unauthorised product. Until there's enough clinical evidence, health professionals will not feel as comfortable to prescribe it.
"In the meantime, a large number of people are actually using it through a heavy reliance on the illict 'black' market, so in order for them to do it safely, we need more education in order to have an open discussion between doctors and patients."
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