Queensland is set to join a New South Wales-led push for medicinal cannabis trials, but some parents of children suffering from epilepsy say they just want to skip that process and continue to administer the controversial drug.Both major parties in Queensland politics have claimed credit for the upcoming trial, which would be a first step towards legalising the practice.State Health Minister Cameron Dick told Parliament on Thursday that, as of Monday, medicinal cannabis had been rescheduled by the Therapeutic Goods Administration from a schedule 9 poison to a schedule 4 medicine for therapeutic use only.
“That means that a medicinal product containing cannabis can now be considered by the TGA for listing on the Australian Register of Therapeutic Goods,” he said.
“It is a small but important step to enabling medicinal cannabis to be used in trials in Australia.
“It will make it easier for medical professionals to source medicinal cannabis through the special access scheme in order for trials to begin.
“We hope this will encourage suppliers of medicinal cannabis to legally supply pharmaceutical standard products for trials, including the trials undertaken in conjunction with New South Wales.”
Queensland joined with NSW to advance the trials for children with epilepsy, the terminally ill and people on chemotherapy.
“We are a listening government and we agreed it would be a very useful and worthwhile thing to join in with NSW in those clinical trials,” he said.
“There is a significant difference between regulated pharmaceutical products and using the crude product from the cannabis plant.”
The state opposition in turn claimed credit for Queensland’s participation in the trials.
“On October 10 last year, I signed off with other health ministers on a bi-partisan agreement that we would co-operate and discuss as a state holding trials and accessing the safety of medicinal cannabis,” Opposition Leader Lawrence Springborg, the former health minister, said.
“This is the LNP plan being accepted by the Labor government, it’s by and large a bi-partisan approval.”
Mr Dick refuted that claim, but, beyond the politics, families wanted certainty that what they were doing for their children would be made legal and they would not be prosecuted for what they saw as a loving act.
Fairfax Media discretely put the call out to parents who had chosen to treat their children with cannabis oil.
About 20 people responded, some of whom agreed to share their stories.
Like most people who came forward, Mark did not want to use his real name.
And it was little wonder.
After all, Mark was breaking the law.
“A lot of people don’t realise the number of people affected and the number of people involved because we’re all worried about prosecution,” he said.
Mark’s seven-year-old daughter developed epilepsy when she was about 15 months old.
“She was always a little bit behind the eight-ball but she was able to do a lot of things,” he said.
“She used to be able to roll over, she used to reach up and pull herself up in a highchair and eat.
“She was starting to talk and, since her epilepsy started, she’s regressed to a stage where she can’t do anything.
“She can’t eat, she has to be fed by tube.”
Mark’s daughter used to have up to 200 seizures a day, he said, and the prescribed medications she was on had either stopped working or had terrible side effects.
“We’ve been told she will slowly get worse and, one day, the inevitable will happen and she’ll basically die from what’s wrong with her,” he said.
So, at their wits end, they started using cannabis oil about three weeks ago.
“As a father, and as parents, we can’t stand by and watch our daughter slowly die and morally and ethically, if there’s something that can help I think it’s wrong not to use it,” Mark said.
“She deserves a chance.”
And the results have been stunning.
“She’s not having any more seizures, she’s improved out of sight,” Mark said.
“She actually wants to eat.
“It’s early days yet, but so far all the results are positive – there are no negatives.
“…We realise that it’s illegal, but if I had to go to jail, I’d go to jail for my daughter if it meant she could stay on it.
“The nurses say she’s looking good and I just keep my mouth shut and say ‘yeah’.
“Our kids are at the stage where nothing we do can make it worse. It can only make them better.”
Mark said the trials were a welcome development, but “we don’t have that sort of time”.
“We know it’s illegal, but when you have a child who the medical system can’t help any more, yes there’s a substance that is legal in a lot of other countries that has been known to help children like our child, why can’t we use it?” he said.
Although Karen’s daughter is 18 and has had seizures since she was three, she has not used cannabis oil.
But Karen desperately wanted to administer the oil. She was just too scared of being caught.
“It’s against the law, so I won’t do it, but at the same time I’m a mum who can’t see her child suffering like that,” she said.
“Knowing that it worked for other people in other countries, does that mean I have to fly her there?
“I’ll be broke, I’ll have to sell my house, or do I just stand there and watch her convulse and get knocked out every time.
“We’ve got to get out of these dark ages. This is Australia.”
About three years ago, Karen’s daughter started to lose her ability to walk and had deteriorated to the point she was confined to a wheelchair
“We listened to what the neurologists said and we followed the advice and instructions on medicine, so we just gave her all the anticonvulsants, but none of them actually helped her at all,” Karen said.
“We have also tried diets, everything, all that we can hear of we just try it.”
But, so far, Karen has drawn a line at cannabis oil.
“We know that it’s worked for others and all we want to know is that, if it worked for others, why can’t it be legalised?” she said
“Everyone has a right to life. I know (cannabis) has been used badly by other people, but surely if it’s good for some, those of us who really need it for a good reason should be able to have access to it without any fear of being on the wrong side of the law.”
Danielle Graham was the only person willing to speak freely using her own name.
Ms Graham’s son, an epileptic, was totally dependent on his parents.
He would have up to 100 seizures a day, up until January when Ms Graham started to orally administer the cannabis oil drops into her son’s mouth.
“I know I shouldn’t be doing it, but I am,” she said.
Ms Graham said she had no regrets.
“We just had no more options and had to seek it ourselves,” she said.
“I spoke to specialists about it, but because it’s illegal I had to do my own research and get it myself.”
The difference, Ms Graham said, had been staggering.
“He is still having seizures, but more rarely. He used to have 50 to 100 a day – I’m talking someone who has not gone a day without seizures since he was two,” she said.
“To give you an idea of how much it’s worked, we go to Coffs Harbour once a year as a family and every time we drive there, he seizes 50 to 100 times.
“I started giving him the cannabis oil in January and went to Coffs in April for Easter.
“He didn’t have one seizure.”
But it had not been without moments of panic.
“We’ve had our moments where I’ve been really stressed, you know, the police would drive past or pull me up for something and it’s like ‘oh my god, is it that?’,” she said.
“I do get very panicky, but I do know here in Brisbane that people using it who have gone public haven’t had the police knocking on their doors.
“So it does worry me, but I had no other choice. The amount of times you hold your child and his lips go blue – enough was enough.”
Annalise has an eight-year-old son who has uncontrolled epilepsy with subclinical seizures.
That meant, she said, there were no outward signs of what was actually going on.
“Because you don’t have anything clinical to go on, it’s hard to know what’s actually happening, apart from on an EEG,” she said.
“But the condition, as you would assume if your brain is active all night while you’re asleep, you should be expecting regression in skills, which we’re not seeing happening so we can only assume the cannabis is helping.”
Annalise said the hardest part was finding a source of the cannabis oil.
“We were able to find a supplier that I was happy with, which had been proving to be the biggest hurdle, to find someone we could trust,” she said.
“That’s the most difficult thing – finding a trusted supplier and a constant supplier, if you’re not going to grow it yourself, which is an option a lot of people take.
“I mean, what if you got your kid on it, it works, and then you can’t get it?”
Still, Annalise said she wished she could talk to medical professionals about the course of action she had taken.
“Part of the frustration is that we don’t have doctors we can talk to, we don’t have people with knowledge other than people who have personal knowledge of doing it themselves illegally,” she said.
“But we don’t feel like we can go to our doctors and get guidance. We’ve just got to try to do it as scientifically as we can.”
And, always, Annalise was looking over her shoulder.
“We got a knock on the door early in the morning one morning and it was the first thing that pops into your brain is, ‘who is that? Why are they here?’ and your heart goes a bit faster,” she said.
“But it was just a delivery man running a bit earlier than planned, but you don’t really realise until that happens how much it is in the back of your mind.”
Along with every other affected person Fairfax Media spoke to, Annalise wanted an assurance of amnesty for all those who went down the cannabis path.
– with Amy Remeikis