Parents are giving their children cannabis to treat serious diseases, and they're resorting to growing their own plants or importing them illegally from overseas.
At least three New Zealand customers order liquid cannabis products from Mulaways Medicinal Cannabis in Kempsie, about 400km north of Sydney in rural New South Wales.
The cannabis tincture has been credited with providing relief for children with terminal illnesses and has sparked renewed debate over clinical trials of medicinal marijuana.
Mulaways founder Tony Bower said three New Zealanders were on a mailing list of about 150 customers. Other Kiwis flew to Australia to source the drug and dozens more were added each week to a bulging waiting list, he said.
But the supply of liquid cannabis could dry up altogether if Bower is sent to prison. He is due to appear in court in October charged with cultivating cannabis and breaching a good behaviour bond he was placed on after a six-week stint in jail in mid-2013.
He said he felt a "duty" to keep growing the plants and supplying the product to children, even if it meant going back to prison. "It's crossed my mind to stop and pack up but these are sick kids. What else can I do?"
Bower said the delivery of the drug to New Zealand was particularly risky - not only for him but for the customers who ordered it. The maximum penalty for importation of liquid cannabis - considered a class B drug in New Zealand - is 14 years in jail. Possession or use offences carry a maximum three-month jail term and/or a $500 fine.
"To tell you the truth, that's why I don't [send] as much to New Zealand," Bower said. "It's hard because you've got people who risk getting their children taken off them."
Hawke's Bay mother Christine* said she tried to source medical cannabis two years ago but met a dead end and decided to grow her own plants. She took the unconventional step of producing cannabis oil for her daughter Ellen*, then aged 14, who was told she may not reach adulthood due to Dravet syndrome, a severe form of epilepsy.
"At the time I was thinking everything else had failed, so why not try it. I was quite pessimistic to be honest."
Christine said the cannabis oil had an immediate and dramatic impact. Ellen's seizures reduced from hundreds each day down to only a handful, allowing her to return to school for the first time in five years.
"She's gone from 120 hospital admissions in 2012 to just eight last year. It's quite amazing. She is still on some pharmaceuticals. We've found that combination with the cannabis oil has been hugely beneficial."
The plants used to make Ellen's cannabis oil are grown at a private property and taken to an "under the radar" lab to be tested. The oil has to be between 0.5 per cent and 1 per cent of THC - a level that's too low to cause any psychoactive "high".
Christine said it was a time-consuming and extremely high-risk process, but she felt it was her only option. "When you have a child whose condition is terminal, you would do just about everything to save them."
As far as she knew she was the only person in New Zealand who made cannabis oil for her child "but there would be lots of parents in the same boat who would be considering it".
Medicinal marijuana support group Green Cross NZ estimated there were hundreds of children and adults across New Zealand using cannabis medically.
Green Cross director Billy McKee said the Government was "out of touch" with the reality of terminally ill patients and said a medical cannabis trial was well overdue.
"It's extremely urgent they look at it. We've been saying this for years - but [Associate Health Minister] Peter Dunne won't engage with us, he's not interested in looking at the evidence."
Dunne said the Government had "no plan" to approve a clinical trial for medical cannabis. He said anecdotal examples of children's health benefits from cannabis oil or liquids were not enough to change his mind on the policy.
"I have yet to see any evidence that cannabis in any form has contributed in any way to help children, or indeed anyone, recover from serious diseases," he said.
New Zealand Drug Foundation director Ross Bell said there was mounting evidence of the benefits of medical cannabis. He said most of that had been ignored by a Government which was "40 years behind on the issue".
The health select committee had particularly failed to heed calls to review the laws, he said.
"There's absolutely more that needs to be done, especially around compassionate laws to prevent parents being prosecuted. If parents think they can help their child they will bend over backwards to find that drug, whether it's legal or not.
"We need to update the legislation to acknowledge that."
The Green Party also criticised the committee's finding, saying its latest report in May was "spurious" and more research was needed.
Growing calls to decriminalise medical marijuana have gained backing from the Australian Medical Association and the NSW Nurses and Midwives' Association. A bill currently before the New South Wales state parliament could approve cannabis use for terminally-ill patients.
New Zealand Medical Association chair Dr Mark Peterson said he was in support of evidence-based testing of medical cannabis, and wanted to see a trial held.
"We think there is a place for more research, absolutely," he said. "We're trying to make the case that medical cannabis shouldn't be treated differently to, say, aspirin or any other controlled drug."
Bower said governments in both countries needed to legalise the drug for medical use. It would be beneficial for his upcoming court case and also crucial to the wellbeing of young patients, he said.
Countries including Canada, Switzerland, Belgium, Czech Republic, Netherlands, Israel, and 23 states in America have all permitted medical cannabis, while maintaining laws against recreational use.
Christine hoped New Zealand would eventually follow that model. She said parents should be able to seek help for their children without feeling like a criminal.
* Names have been changed for legal protection.
'IT'S AMAZING . . . SHE'S REALLY DEVELOPING'
Eleven-year-old Paige Gallien uses marijuana three times a day to control her seizures in a treatment programme that's been personally ticked off by the health minister.
The Hamilton girl is the only child in New Zealand approved to use Sativex - a medical cannabis mouth spray.
Her father Brent Gallien said Paige had shown an "incredible improvement" in her Dravet syndrome, a rare form of epilepsy, and he wanted the Government to subsidise the drug and make it more accessible for other children.
Since Paige started using Sativex in February she had gone from an average of eight seizures per night down to fewer than one a night, Gallien said. "It's amazing to see her now. Her speech is great, she's really developing. She drew a picture of a smiley face the other day, which doesn't sound like much but for us was really massive."
Sativex has been legal in New Zealand since 2008 but has only partial approval, meaning each application has to be authorised through the health minister's office. Ministry of Health figures show only 53 prescriptions have been issued, including for repeat patients, and no longer active users.
Gallien said there were extensive hoops to jump through to get registered for the programme. He admitted if it wasn't made available for Paige, he would have bought illegal cannabis. "We would have been doing an illegal version. There's no question about that."
Sativex did not receive any subsidy through Pharmac and did not come cheap, at about $1000 for three small bottles, which lasted between one month and three months, depending on the level of use.
It also had side-effects. Government authority Medsafe warned dizziness was commonly reported and it did not recommend Sativex for children "due to a lack of safety and efficacy data".
New Zealand Medical Association chair Dr Mark Peterson said Sativex was out of reach for most people.
"The bar is set deliberately high because it has not been approved for full market use," he said. "It also lacks the evidence of how safe it is to use."
The spray contains half the level of THC - the compound that gives the psychoactive "high" - usually found in cannabis.
Gallien said Paige often felt drowsy, which he suggested would not be the case if he had access to other illegal and unregulated cannabis products, which had lower THC-levels.
Another pharmaceutical, Epidiolex, which is a liquid, non-psychoactive cannabinoid, is also on the radar for New Zealand following clinical trials in America.
Medsafe group manager Stewart Jessamine said the trials were being closely followed and the Ministry of Health "may in the future consider medicinal products [such as Epidiolex] be brought to the market".
Gallien said he would prefer Paige to use Epidiolex, but he expected it would be at least a couple of years away. The more immediate concern was that New Zealand children with serious diseases were missing out on access to Sativex due to cost, or bureaucratic hurdles.
"The next step is to help all these other kids get funding and permission to use it. There are so many people out there with the same issue."
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