Dying Kiwis become criminals as they turn to medicinal cannabis
An increasing number of Kiwis are turning to medicinal cannabis at the ends of their lives as they suffer from the effects of terminal illnesses such as cancer.
They are the everyday successors to Helen Kelly - people prepared to break the law to avoid dying a slow and painful death.
What they're doing is illegal, but they insist the drug helps relieve their symptoms, and say they have nothing to lose.
Joan Cowie, a 64-year-old Auckland grandmother, says she suffers from "horrid" pain when she's not taking cannabis.
"It can be piercing, and if I lay on my side and bring my arm over, it feels like something is being squashed in my chest," she says.
Heading into her 60s, Cowie's plan was to retire and "start doing all that crazy stuff I didn't do in my 20s".
Then, two years ago, she was told she had terminal lung cancer.
"I cried. I thought I was going to die. Well, I knew I was going to die," she says.
Bay of Plenty truck driver Sonia Howes, 40, was also diagnosed with terminal lung cancer, just after landing a new job driving a milk tanker in 2014.
"I just couldn't believe what they were saying to me," she says. "Cancer to me equals death. I would lay on the couch and just cry for days."
Whangarei mother Alexa Smith*, 39, received the same diagnosis last year, not long after giving birth to her first child. Doctors initially misplaced her chest pain.
"They sent me off to physio and osteo and said 'oh, you're breastfeeding, and you've got bad posture', but I had a couple of episodes coughing up blood, and I knew something was wrong," she says.
"Finally they sent me for a scan, and found the cancer."
TURNING TO CANNABIS
All three women now use medicinal cannabis to help counter the effects of their disease, including chronic pain and nausea.
They follow in the footsteps of former trade union boss Helen Kelly, who spoke publicly about her use of medicinal cannabis before her death from lung cancer in October 2016 at the age of 52.
Kelly's back was broken as tumours spread and pressed against her spine, but she said illegally taking cannabis helped her stay pain-free and sleep at night.
Her journey has since inspired many other cancer sufferers to seek out medicinal cannabis.
Cowie turned to Facebook to ask for help to access the drug after reading about its potential benefits.
"I was absolutely terrified," she says. "I knew it was illegal, and I was frightened that the police might be watching that particular page, but I had no other choice."
Since using cannabis, Cowie says her appetite has returned, her pain has been relieved, and she can get a good night's sleep.
"It's a blessing," she says. "As far as I'm concerned, it's a god-send."
Cowie had never been a cannabis user, and as a mother she warned her six children to stay away from the drug.
"My daughter thinks it's the funniest thing that God put breath into, that the old girl's now having cannabis," she says. "Especially after I banged on at them over the years!"
Smith says she's "not a druggie", but the gentle effect of cannabis helps her in a way that other drugs haven't.
"The pain was really starting to ramp up in my bones, and the prescribed stuff doesn't really agree with me," she says. "It makes me vomit, and it's got all sorts of side effects."
LIFE AS A CRIMINAL
Howes is afraid of what could happen to her family if police decide to target her cannabis use.
"I worry that I may lose my children," she says. "I take good care of my children, and I don't believe they need to be out of my care because I take medical cannabis."
Cowie carries copies of her cancer diagnosis in her handbag in case she ever has to explain to police why she's carrying cannabis.
"That way at least if I get pulled over I can show that I'm not lying, I have got cancer," she says.
Smith acknowledges that technically she's a criminal, but doesn't identify with the label.
"I really don't believe I'm doing anything wrong," she says. "It's the law that's wrong. I'm just trying to help my quality of life, and make it worth being around for."
The women all agree that legally available cannabis extract products such as Sativex and Tilray are out of reach - with a month of treatment costing as much as $1200.
Those prices have kept most Kiwis away, with figures from the Ministry of Health showing just 55 active approvals for Sativex, and only four active approvals for Tilray.
By comparison, black market cannabis can cost as little as $200 for four to six weeks of treatment.
Howes says even finding that much cash can be a struggle while living on a benefit, and she'd much rather just grow her own.
"If I could just grow it myself and medicate myself it wouldn't cost a fortune, and I wouldn't be running under the radar looking for cannabis everywhere," she says.
Central Auckland GP Dr Graham Gulbransen says patients are increasingly asking how they can access medicinal cannabis.
"I am not able to recommend that they go to illegal sources, because they're not standardised products," he says. "The dose is unknown, and I don't know if there's contamination, so it leaves me in a difficult situation.
"As a doctor I'm frustrated that there's nothing I can realistically prescribe, and I would love to have a whole range of cheaper products available."
The Cancer Society takes a cautious approach to the use of medicinal cannabis, and says there is no research-based evidence to prove the effects of the drug on cancer patients.
"We would obviously be very excited if there was a link, but currently there is no research that we are aware of that links cannabis as an effective treatment of cancer," says spokesman Daniel Glover.
Glover says likewise, the society would not recommend cannabis for pain relief until rigorous testing had been completed and the drug was approved for use in New Zealand.
"If anyone would like to consider an alternative treatment option, we suggest you seek advice from your oncologist or medical practitioner as some may affect your treatment," he says.
Dr John Ashton, pharmacologist and health researcher at the University of Otago, says initial research suggests the THC compound in cannabis can help with mild pain relief and non-specific sedation.
"There are other properties, such as reducing nausea and stimulating appetite, although we have other drugs today which do that better," Ashton says.
He explains that beyond that, the long-term effects of cannabis remain unclear.
"There's a lot of controversy over the permanent effects," he says.
"Whatever your stance on legalisation or decriminalisation, the medicinal use of anything should be held to the same standard. So when people are just mixing up their own concoctions, it's very hard to know what's actually going on."
NO TIME TO WAIT
Howes, Smith and Cowie say that with terminal cancer, they don't have time to wait while the government debates medicinal cannabis.
"When it's your life that you're dealing with, to have to live and do things under the radar is stupid, it's ridiculous," says Smith.
Cowie wants to grow her own cannabis, but would also be happy to buy commercially grown products.
"The population is calling for it, and we've got farmers who are struggling who would gladly grow it," she says. 'They'd probably make more money than they do now."
Howes says it's unfair to force terminally ill patients to choose between accessing their medicine or breaking the law.
"It adds a lot of pressure, because you don't know who should be talking to," she says.
Smith wants those in Parliament to think about how it would feel if they were put in the same situation.
"You go through something like this, and it changes your whole perspective," she says.
"The politicians need to hurry up and make it legal."
*name changed to protect privacy.