Alex Renton looks down on the bench where his mother prepares cannabis: an impish blond toddler, a grinning teenager, a sibling, a son.
It seems longer than two years since he succumbed at the age of 19 to status elipticus, a kind of prolonged, constant seizure — perhaps because so much has changed.
At the request of his family and doctors, Alex became the first New Zealand patient to be granted ministerial approval to import a non-pharmaceutical grade cannabis product in June 2015. The treatment couldn't save him, but New Zealand's conversation about medical cannabis turns on the weeks he spent in hospital, his brain in crisis.
In the course of approving the request to import an oil containing cannabidiol (CBD), Associate Health minister Peter Dunne had officials draw up guidelines for future applications, which had been provided for in law for years but never made before.
Helen Kelly applied, unsuccessfully, for another cannabis product under those guidelines. Dunne ordered a review and the Labour Party promised to make access easier.
This year, Dunne removed the requirement for ministerial approval for CBD products altogether.
And now, Alex Renton has landed his mother in court. Rose Renton, who lives in Nelson, is the most high-profile of a series of "green fairies" to face charges of growing, processing and possessing cannabis for supply.
Although Kelly very publicly eased her pain with the cannabis products people brought to her door, no one seemed inclined to make any arrests. That has changed this year.
"Grief and loss can go two ways," says Renton. "It can break you and you can end up sad and resentful at life. Or you can turn it around and express who he was in your quest for equality. I was a very private person up until Alex's illness. And it's not something I would say that I enjoy, the public side of it. It's not something I gravitate towards, but it seems to be where I've ended up."
That quest has entailed sourcing plant strains high in CBD — a non-psychoactive chemical with plausible benefits in treating pain, inflammation and anxiety — making them into balms, oils and brownies and sending those products the length of the country to people who say they benefit from them.
Renton says she now has three local GPs and a pain specialist referring patients to her, because "the pharmaceuticals haven't been and aren't working".
The results, she says, have largely been impressive: "Across the board: sleep, wellbeing, blood pressure. These people are actually moving away from pharmaceuticals and replacing it with a medicinal product that's non-toxic. And it's giving them quality of life. I think that's the central point."
The room, in the downstairs storey of Renton's house in Nelson's Brook Valley, reeks faintly but unmistakeably of boiled weed. Renton has left out fresh jars of cannabis balm to set.
There's a sense that Alex, the second of her seven children, is here too, and not only in the photographs above the bench.
"Sometimes I talk to Alex and I say: Am I doing it the way that you would do it? Have I read and investigated what you told me that you'd read?' Am I doing justice to who he was and how he felt about cannabis as medicine? And I just kept getting the green light. 'Yep mum, you've far exceeded all expectations'. He knew it was a medicine. That's why we grew it that year. The only year we grew it together was before he got sick."
Renton is 44, lucid and healthy. Her high cheekbones have been grazed by the sun. She doesn't look like someone who would end up in court on drug charges, but she had warned her kids that might happen.
Getting busted, she says, "wasn't a horrible experience. Even the sergeant who was here apologised for his ignorance and for not being up to date with the law change, apologised for taking what he had to take.
"The biggest trauma for me from getting busted was my patients' medicine. As far as my reputation goes, when you've lost your best friend the way I lost Alex there's nothing really on this earth that will hurt me."
Some of Renton's products do contain THC — the cannabinoid that produces a high and is specifically banned under the Misuse of Drugs Act. Those, she says, are for people suffering severe pain and sleeplessness. But the balm, which is made from cannabis roots, does not.
Contrary to Renton's belief, it probably doesn't contain CBD or other cannabinoids either. And yet it's plausible that other constituents of the plant might be helping.
Several terpenes found in the roots have been investigated, and even patented, as potential treatments for pain, ulceration and inflammation. Use of the roots as balms and poultices in Chinese medicine dates back at least 5000 years.
But what quantity of these terpenes are there in a gram of balm? It's not clear. It's also not clear how much CBD (and how little THC) there is in the CBD oil Renton makes, which is an infusion combining material from the plant and organic hemp seed oil.
Perhaps it doesn't matter — perhaps these products are little different from the pots of herbal balm you might find for sale at Nelson market on a Saturday. (The balm recipe also includes lavender, calendula, kawakawa, comfrey, plantain and borage.) But it's very difficult to convince medical regulators and doctors to call something a medicine if you can't say exactly what's in it.
Renton slips easily from talking about medical benefits to the "spiritual" nature of the plant. She trusts her plants — high-CBD strains called Charlotte's Web and CBD Therapy, which had been grown for her by West Coast man John Patrick, who was busted at the same time she was.
"The Charlotte's Web bud was perfect, you only had to sniff it. You just know — cannabis has a vibration. I think each one of us has a strain that is linked to us as a soul."
She also believes — with some justification — that the availability of higher-CBD recreational cannabis in place of the high-THC "rocket fuel" bred by the black market would reduce harm.
But how can she know that the ostensible cannabinoid ratios in the plants are represented in her products?
"How do you know anything? Results."
A few kilometres away in the affordable suburb of Washington Valley, almost in line of sight of Rose Renton's house, Shane and Kat Le Brun are fighting a very different battle — not to reject the system, but to make the system work better.
They had been married three months, he an army munitions officer, she an early childhood teacher, on the day in 2010 when their lives changed. Kat stepped out on an icy deck at the school where she was working, "my leg went from underneath me and I landed awkwardly on my back and butt. That was it."
Doctors eventually discovered three of her spinal discs had prolapsed. In the seven years since, the 31 year-old has had spinal surgery and then been re-injured — knocked over by a child in a sandpit — and twice gone into respiratory arrest from opioids administered by emergency medics.
She also, somehow, gave birth to their son, Isaiah — which meant going without the fentanyl patches and clonidine she'd been prescribed to manage pain.
The re-injury left her with central sensitisation syndrome, or allodynia, a kind of electrical fault in which her nervous system malfunctions and radically amplifies the perception of pain. She has managed to return to part-time work, but usually goes straight to bed when she gets home. Her pain is the central fact of their family life.
Her condition is managed to some extent with methadone, the only opioid prescribed for long-term use. It's slowly destroying her teeth.
Over time, she's had various powerful opioids, ketamine, gabapentin, valium and an anti-depressant (stress is known to aggravate her condition). She has tried cognitive behavioural therapy and acupuncture.
And on one terrible evening in hospital, when she couldn't stop screaming, she was given an anti-psychotic and shut in a room by herself for the night.
But there is one treatment she's not allowed — or at least, can't legally get. Cannabis.
She says that the first time she tried cannabis ("I got it from a family member") she slept well for the first time in four or five years.
Shane, who now works in IT, had already taken a nerdish interest in her pain medication (to the extent that they suspect he appeared to "know too much" and was incorrectly flagged as a drug-seeker by the system) and turned his attention to cannabis.
He formed a charity, Medical Cannabis Awareness NZ, which campaigns for the availability of affordable medicines via the non-pharmaceutical provisions first used by Alex Renton's doctors.
Last year, MCANZ was responsible for 80 per cent of ministerial approvals for their use. Ministry officials who were once suspicious of medical cannabis now speak to him regularly.
Ironically, the one he hasn't been able to help is Kat.
"I do find it very difficult," she says. "It feels at times that he's fighting harder for others than he is me. At the height of my pain, I have been known to throw a few pillows at Shane and say to him, you're doing all this work and you have been for so long and I'm still not further ahead.
Her frustration is compounded by the stigma Shane's advocacy attracts.
"I have been discriminated against because of what Shane does. I think people hear the world cannabis and freak out — because it's illegal in their eyes. And all they know of when you say that word is getting high.
"They don't know the ins and outs, how it can help people and how you can actually still have the product without being high."
Although they decline to go into detail, the couple say they have also been on the receiving end of police attention.
Kat's own bid to be legally prescribed a cannabis product hit a familiar roadblock — doctors. A senior medic at Burwood spinal unit told them there was insufficient evidence for him to prescribe Sativex, the only Medsafe-approved cannabis product in New Zealand.
"I presented the doctor with a printout of a trial of Sativex for allodynia and hyperalgesia," says Shane. "And he tried to change the topic because I basically knew more than he did."
Kat adds: "The report came back and said 'the husband seems to know a lot about cannabis' and made it seem really dodgy."
"We had to go doctor-shopping," Shane says. "It's disappointing, because she's exhausted all reasonable options."
The ministry has since taken a different view, acknowledging that a cannabis product is a benign option for Kat and approving access. Now, they face the other big roadblock for legitimate medical cannabis in this country: cost.
Sativex costs about $1000 a month and a bid by Pharmac to fund it was cut off by its own advisory committee in 2015, in part over fears that it might be "diverted" for illicit use. (The equivalent advisor in the UK takes the opposite view and believes there is little risk of diversion.)
Last year, MCANZ helped Auckland MS patient Dr Huhana Hickey win approval for a functionally identical product made by the Canadian company Tilray.
But that has ended up being more costly than they'd hoped and the couple are now pinning their own hopes on a similar product made by another Canadian company, CanniMed.
Remarkably, the Ministry of Health is now prepared to approve CanniMed's whole dried cannabis products, for use in vapourisers. It has also tabled work on regulations for growing cannabis locally for research as part of advice to the new Government.
Shane believes local production to precise medical standards is the only long-term answer.
"The patient population views the green fairies and illegal suppliers as heroes," he says.
"As a charity, we cannot condone or promote illegal activity. But come on — there's 100,000 people who claim they use cannabis medically at least sometimes and around 50 people in the country accessing it legally at any one time. There's just a huge disparity.
"If we look at Israel and convert their population to ours, we should have about 15,000 patients on it. If you look at Canada, it'd be more like 25,000 patients. And yet we've got 50. When Bill English said during the election campaign that we've got the balance about right … what a tosser."
Sue Grey, the third member of Nelson's medical cannabis triumvirate, looks out over the ocean from her house above Atawhai Drive.
She was a specialist in environmental law when, five years ago, she was asked to act for 61 year-old Golden Bay woman Victoria Davis, who had been charged with cannabis cultivation and possession. Davis had been growing for her husband John, a double amputee wracked with phantom pains.
Grey won her client a discharge without conviction, in part by presenting a doctor's letter to the judge.
She thought she would move on, but in 2015, Davis recommended her to another Golden Bay resident in legal trouble, Rebecca Reider. Reider was facing serious charges after posting herself two bars of cannabis chocolate — which had been legally prescribed to her for chronic pain in California and delivered to her family's home.
Again, Grey presented medical records and Reider was eventually discharged.
But she also studied the Misuse of Drugs Act and discovered that Reider was allowed to import a controlled drug if it was prescribed and she brought it in herself.
In August 2016, Reider did just that — arriving at Auckland airport with a jar of buds prescribed in Hawaii.
Then, advocating for terminal cancer patient Tom Harris, Grey challenged the Ministry of Health's position that CBD is a controlled drug under the Misuse of Drugs Act. The Government's own agency, ESR, wrote in unequivocal support of her argument.
CBD officially remains a controlled drug — but when Dunne announced this year that CBD prescriptions would no longer require ministry approval, it was effectively a surrender.
Now, Grey says, Customs seems to be letting through imported CBD products. But the Reider precedent allowing visitors to bring in medicines containing THC has been undone by a US Drug Enforcement Agency edict, which also blocks the ministry from approving any product made in the US.
The law, Grey agrees, is a real mess. She says she feels for the police.
"I've spent a lot of time working with the Nelson police, the drug squad and the prosecutors. When I first started working with them they had zero tolerance for any excuse for medicinal or any other cannabis.
"Now, they've really learned a lot — but they're in a difficult position because their job is to uphold the law. They have discretion, but they have to report to their bosses. They're the meat in the sandwich, really."
Grey and her clients (she is acting for Rose Renton and has also advised the Le Bruns) have crossed the boundary between Nelson's twin images: the conservative regional centre and the sunsoaked hippie hideaway.
She has given talks about medical cannabis to the local branches of Rotary, the Lions and the Freemasons.
People stop Rose Renton in the supermarket to ask her about getting relief for relatives.
But her acceptance by the community is no defence in law.
"Rose is a hero, just in terms of raising awareness — and her courage. I've never met anyone with more courage," says Grey. "You have a choice of how you respond — and fear and hiding in the background is your enemy. The public spotlight can cure many problems. Let's have the informed conversation and let it take us where it takes us."
Much rests now on Labour's promised action on medical cannabis in its first 100 days.
The signs are it will be relatively conservative — and many advocates aren't confident it understands the issues. A sustainable solution ultimately involves revisiting the 40-year-old Misuse of Drugs Act — a path the last Government repeatedly rejected.
It will take more than the tinkering of the last few years to achieve, but it's quite conceivable New Zealand could harness its expertise in breeding plants for their attributes in medical cannabis research. Conceivable, as well, that a place with high sunshine hours and community buy-in could become a centre of excellence. A place like Nelson, perhaps.
What is medical cannabis?
Cannabis plant contains at least 85 different cannabinoids and more than 100 terpenes, aromatic oils which give cannabis its aroma and are thought to alter the effects of the cannabinoids.
Cannabis bred for medical use will often contain higher levels of one cannabinoid, cannabidiol (CBD), which is not psychoactive and seems to moderate the effect of THC, the one that produces a "high".
Over decades, illicit cannabis has been bred for a much higher ratio of THC to CBD, while many refined cannabis products, such as Sativex, are "balanced", containing an equal ratio of CBD and THC.
What's the current law on medical cannabis in New Zealand?
Every part of the cannabis plant — even the parts that contain no THC — is officially a controlled drug under the Misuse of Drugs Act 1975.
This has a huge impact on medical use. The regulations attached to the act make most cannabis-derived products even harder to prescribe than morphine and cocaine, requiring ministerial approval for each prescription.
The regulations have been recently relaxed to allow doctors to prescribe Sativex and CBD products without asking the ministry for permission.
In some countries, Britain for example, CBD is considered so harmless it can be bought off the shelf as a dietary supplement.
76% of Kiwis say drug laws should be changed so patients have safe and legal access to medicinal cannabis products prescribed by licensed doctors, according to a UMR poll
12%in the same poll are opposed to the changes
$1300 monthly cost of Sativex, the only approved medical cannabis product in New Zealand
17,000 Kiwis signed a petition in favour of legalising medical cannabis
What's the evidence?
A major review for the US National Academies this year found evidence that "patients who were treated with cannabis or cannabinoids were more likely to experience a clinically significant reduction in pain symptoms" although the effects were likely to be modest, "substantial" evidence that cannabinoid products can alleviate multiple sclerosis spasms and "conclusive evidence" that cannabis eases nausea in chemotherapy patients.
Advocates believe its applications are far wider, noting that cannabinoids act on the body's endocannabinoid system, which regulates a range of functions, including pain, stress, sleep and appetite. It's also not entirely crazy to believe that cannabis could treat some cancers: studies using animal models have shown that THC and CBD can shrink some tumours, especially the hard-to-treat brain cancer glioma.
But that's a long way from an effective human medicine. The main problem is that federal regulations make studies difficult to conduct in the US, the traditional powerhouse of medical research. Critically, researchers there are forbidden to use modern, purpose-bred strains.
A new public position from the New Zealand Medical Association acknowledges "biological plausibility for the use of cannabis as a medicine", but says evidence of benefits is currently limited, in part because the "prohibitionist approach" constrains research. It ventures that the benefit experienced by many patients may be down to a "non-specific anxiolytic [anti-anxiety] effect".
Doctors are advised to remain "actively engaged in the debate" and to pursue "continuing education".
Perhaps most significantly, it says: "It is important to acknowledge the wide range of risks associated with cannabis, but these need to be considered in a similar light to the risks and side-effect profile of existing medications."