Toni-Marie Matich's eldest daughter suffers from intractable epilepsy - a seizure disorder that cannot be controlled with conventional medicine. It led the Hawkes Bay mother-of-five to found United in Compassion (UIC), which advocates for New Zealand-based research into the therapeutic effects of cannabis-based medicines. The paediatrician caring for her daughter just happens to be the Children's Commissioner, Russell Wills.
And that's led to the unlikely but powerful alliance of Wills and UIC, teaming up with NZ Drug Foundation, to campaign for broader access to medicinal cannabis. It's raised the prospect that it could soon become as readily available as morphine.
For Wills, juggling both roles could be a political minefield, but he says its not an issue: as a doctor, he can see the daily impact of what these "devastating diseases do to children and their families". He's not short of stories of desperate and vulnerable families who have gone to "extraordinary lengths to obtain treatments at enormous cost and extreme risk that then aren't effective".
"I think doctors are desperate," he says, "to see patients have access to effective treatments."
Research and random-control trials of cannabinoid products are underway in Israel and the United States and the results of those trials could be just months away - which could mean a New Zealand-approved product could be available by next year, once manufacturers have produced a product and passed MedSafe checks.
At that point Pharmac will negotiate a price with the manufacturers and Wills doesn't see there being any delays because associate health minister Peter Dunne, the ministry, doctors and parents "are all on the same page".
"Pharmac will be persuaded by evidence of effect and cost."
Medicinal cannabis is a polarising issue but Wills says he hasn't received any public backlash for his support of the treatment alternative.
"I think Toni and United in Compassion have been really responsible about how they're working with the public servants and the minister to ensure that children with intractable epilepsy are included in research, if they can be, and have access to these medicines when they can."
He said Dunne and the ministry were in a "dreadful bind" but despite the desperation of those involved they'd shown "extraordinary sophistication and integrity. Everyone is on the same side here, everyone wants access to safe medicines at a reasonable price as soon as we can."
Wills is no stranger to families who have accessed cannabis products illegally and he says that only demonstrates how "desperate and vulnerable" they are.
Every day doctors counsel families on the health and legal risks of sourcing illegal products while encouraging an open and trusting relationship. "You don't turn a blind eye - you engage with the patient and counsel them...that's what any doctor would do in that scenario".
For years Matich has been caring for her seriously-ill daughter while striving to get greater access to treatment for families suffering a similar fate. In a few weeks UIC will announce a crowdfunding initiative to raise money for Matich's extensive work educating different organisations on the medical benefits of cannabis.
Getting as much of the medical profession on board as possible will be instrumental in the success of broadening access for patients. In November a first-of-its-kind national symposium on medicinal cannabis will be held in Wellington with guest speakers including doctors, scientists and international advocates from a number of organisations, particularly the United States and Australia, where access is moving along at a steady rate.
New Zealand's UIC branch along with Medsafe plans to duplicate the testing and research work already being done in Australia by its own UIC. Doing drug trials in New Zealand is a possibility and while approval would be granted, both Wills and Dunne say the cost and resources involved are prohibitive. For that reason the Australian trials are pivotal as New Zealand looks to piggy-back on to the work already being done there.
Dunne says there's no need to "reinvent the wheel" and he's watching trials and research coming out of the States and Australia very carefully.
Nevertheless Matich is pushing on with trials here. A product and supplier have been secured along with a medical cannabis specialist to oversee the testing.
In June Nelson teenager Alex Renton received approval from Dunne to be treated with Elixinol - a hemp-based product, as opposed to a cannabis plant - the first time the drug had been approved for use here. Renton was treated with Elixinol for several weeks before losing his battle with "status epilepticus" - a kind of prolonged seizure.
Matich said UIC were calling for high quality cannabidiols of different strains and ratios, which didn't include Elixinol. "Sativex is a good product...but it's out of the price range and not ideal for every situation."
Sativex is currently the only product available in New Zealand legally that Dunne doesn't have to approve but it's not subsidised by the Government's drug purchaser, Pharmac.
Matich says people need to know the "risks versus the benefits" of medicinal cannabis.
"I think we actually have the ability to set up a regime here in New Zealand that respects all those things. As hard as it is for me to say I can understand the Government's view-point. This is pioneering progress in a reasonable logical way that sees possible future patients benefiting in a way that's safe and as effective as possible."
DUNNE WANTS THE SAME THING
The Prime Minister won't be persuaded to broaden access to medicinal cannabis unless he sees new evidence it works - that wish could soon be granted. Dunne is watching the US and Israeli trials and is also aware of Australian research. He says he doesn't want to "reinvent the wheel" when it comes to testing medicines for approval.
"If a medicine has been tested in the United States or Australia or Britain, basically similar jurisdictions to New Zealand, and the outcome has been proven to be a positive one - we wouldn't seek to reinvent the wheel in terms of New Zealand." In short, if the US regulator, the FDA, approves something in America - "it would be very unlikely we would say it's not a good enough standard for us. If there's credible studies we can piggy-back off then we'd be foolish not to."
John Key has previously stated he didn't support better access to medicinal cannabis because he hadn't seen any evidence that it was an effective option and there were alternatives available.
But Key is now saying he'd consider any new research or advice that's presented to him that proves medicinal cannabis to be effective.
Dunne is treating it the same as he would any other new medicine and he's not putting a timeframe on how long it might be before cannabidiols are available: "I don't want to see things rushed or inferior tests developed or results produced simply because people think that it might be timely and it needs to be in a hurry."
Dunne says the whole point is that any medication funded by Pharmac is treated the same.
"If you take the case of Sativex, which is legally available at the moment, it's not subsidised by Pharmac but it's come through the hoops. I don't have to approve the use of Sativex."
"Essentially if the product ultimately became one that had been ticked off by Medsafe and it was being funded by Pharmac, it would be no different to any other Pharmac medicine in terms of applicability...like morphine or any of the other products Pharmac funds."