Parents of children with severe epilepsy are one of the main groups affected. They say red tape is blocking access to medicinal cannabis for patients in need and many are at their wits end.
Even on a good day, eight-year-old Sophie Martin has hundreds of seizures. When she has a severe seizure, she turns blue and cannot breathe. She has been in and out of hospital since she was 10 weeks old and there have been close to 100 admissions to intensive care.
Every day her parents, Shellie and David, move mountains to try to give her some quality of life. Their lounge room is like a miniature hospital, complete with resuscitation trolley. Even the simplest of tasks, like going outside, are a mission — they have to go armed with a paramedic bag.
The decision makers, say the Martins, have "zero idea of what it is like to have a child this sick". They are talking about medicinal cannabis. 'We have no more options'
The couple are speaking out for the first time about their illicit use of the drug. In March, after a big decline in Sophie's condition and yet another harrowing stint in hospital, the Martins told doctors that they had made a decision.
"I said to the doctors, I'm just doing this now on the record because we have no more options."
The Martins decided to order a low THC cannabis oil on the internet from a company based in Colorado in the US after watching the progress, years earlier, of a young girl with the same incurable condition, Dravet Syndrome. "She went from being — I don't want to use the word vegetable, but on some days that's what they are, they can't do a thing — to being active and being productive and I just went, I need that for my little girl."
'It is making a difference for my daughter'
This is a video of Sophie in a state of Status Epilepticus. This type of seizure is catastrophic and is a medical emergency. Sophie has had 50 of these types of seizures, all requiring admission to the Intensive Care Unit and being put into an induced coma to stop the seizure. Sophie's last status episode in March 2014 went for 11 hours. The longest she has fitted continiously for has been 5 days.
Carol Ireland of the group Epilepsy Action Australia said many other desperate families were in a similar predicament.
"We've certainly heard of families who are using an illicit product and they are going to their doctors and they're trying to get a prescription for a legal product, they don't want to be breaking the law," Ms Ireland said.
"However, that's really, really difficult. "When they seek approval from the government, the government is expecting some research in terms of the efficacy of the drug that they are asking for and that research is not there yet. "So the doctors aren't comfortable. The doctors aren't prescribing."
Compounding the hurdles, say the families, is a patchwork of complex regulations. State as well as Commonwealth approval is needed before medicinal cannabis can be prescribed and each state has its own regime.
At the federal level, medicinal cannabis can be prescribed under two schemes, the Special Access Scheme and the Authorised Prescriber scheme.
National figures from the Therapeutic Goods Administration (TGA) show there have been 82 approvals for prescriptions under the Special Access scheme since November last year and it says 60 patients have been treated with medicinal cannabis by specialists who have applied to become Authorised Prescribers since January 1.
The Australian Medical Association (AMA) said the rollout of medicinal cannabis is being tightly controlled because there is little clinical evidence to support its use.
'82 approvals for prescriptions under the Special Access Scheme since November? That's it?'There IS something you can do about it