For 11 years, Jacinta Newport’s daughter has been in pain.
Sometimes in the hips, sometimes in her lower limbs, that pain, along with frequent visits to specialists, has been a constant, just like her cocktail of medicines and often terrible side effects.
“It’s just affected her life on every level,” Mrs Newport says.
Her daughter, now 22, was diagnosed with juvenile arthritis when she was 11. The condition affects about one in 1000 New Zealand children.
“We’ve tried everything. We’ve been everywhere. We know what works and what doesn’t work.”
Mrs Newport, a nurse, said her daughter had worked hard to complete her education and lead a social life, despite side-effects from opioid medicines including drowsiness, fatigue, dry mouth, blurred vision and hyperalgesia, or heightened sensitivity to pain.
The family have spent the best part of two years working to get a Sativex prescription.
The cannabinoid spray was used to treat spasticity due to multiple sclerosis but was also prescribed for people with a range of pain conditions.
Pharmac, the agency responsible for deciding which medicines get subsidised, plans to discuss Sativex with its primary clinical advisory committee this month, a first step towards possibly more public funding.
Currently 27 New Zealanders were approved to use the spray.
Ms Newport said many more people could benefit from the spray, and those who already accessed it could barely afford it, and often had to endure a ridiculous ordeal beforehand.
She believed passionate emotions about cannabis-based medications had muddied the debate.
Even predatory criminals complicate discussion of Sativex, with some people with the spray reluctant to reveal their identities for fear of being burgled. She wanted her daughter, currently prescribed opiates, to not be named for the same reason.
Ms Newport said some specialists had not properly understood the depression they cited as a reason for not prescribing Sativex to her daughter.
“Why they won’t do it is because she’s had a bit of depression, but the drugs cause the depression. And this is the problem…they use it as an excuse.”
She believed some parents of epileptic children were breaking the law, or even moving to Colorado, to access medical marijuana and treat chronic pain their loved ones suffered from.
The US state has been at the vanguard of cannabis legalisation and medicinal marijuana regulation.
Mrs Newport and her daughter have even travelled to Sydney Children’s Hospital for a pain management programme.
The nurse asked why her daughter still couldn’t get Sativex when she believed it was more widely-prescribed or accessible in some other countries.
“She would love to be on Sativex, to give it a go. She’s not a recreational marijuana user.”
One man who shattered his knee in a 2012 accident and had a chronic pain condition said he went through hell before getting Sativex, which now made his condition more tolerable.
He said the condition was like “taking a blowtorch to your skin or cutting a finger off with no anaesthetic.”
He wanted to remain anonymous, concerned his access to opiates and Sativex would attract thieves.
He said he tried 16 different medicines, including opiates, tricyclics and gabapentin.
“They all had horrible side effects. Methadone gave me mood swings, depression and rage, opiates turned me into a zombie,” he said.
“It was a dark time. I am lucky to be here.”
Eventually a doctor prescribed him Sativex — but he said ACC would not initially fund it.
He said the agency was later ordered to fund his Sativex but he was restricted to 12 sprays a day.
Yet he said Sativex was overpriced here and he was not allowed proper dosing for his condition.
He said public agencies should fund a generic brand, made in New Zealand, to make Sativex more accessible and affordable. Currently, innovation in the development and awareness of medical cannabis here was hamstrung.
He said lack of education about Sativex was a problem, and some doctors did not know how to get it, or that it was even an