A Kaitaia family is continuing to battle for access to an essential medicine for their daughter, and for accountability from health authorities.
Alisha Butt is dependent on frequent doses of medical marijuana (Sativex), and her parents Royd and Sushila say inadequate supply represents a potentially life-threatening scenario. She had been using the drug for almost a year to control severe epilepsy.
In September she became the first person in the country to receive publicly-funded medical cannabis, with Northland DHB undertaking to continue providing it while it was needed and remained effective.
Mrs Butt said each dispensary of the medicine was supposed to last a month, but it didn't.
"In the past Alisha had one to two weeks' supply left before we got the next lot, but now were are receiving it on the day it is supposed to be finished. This is putting Alisha's life at risk," she said. The delay was increasing stress levels for the whole family.
"We get three bottles, which are supposed to be 10ml each, but some have less, so the monthly prescription doesn't even last three weeks. We need at least a week's supply to be on hand," she said.
"If she doesn't get one day's worth it's life threatening."
The supply had to run out before the family could obtain more from Australia.
The family's concerns had been raised in writing with Alisha's specialist and various government agencies, but had so far been ignored or overlooked. Others who had not responded included elected members of the DHB and politicians, one of whom had reportedly told the family to get a lawyer.
The family has gone as far as approaching the police to accuse the DHB of committing a crime, while they have also been accused by specialists and the health board of misusing the drug.
Mrs Butt believed her daughter might have died but for the intervention of three "caring ladies" from Kaitaia who had helped obtain further supplies of Sativex for the last three weeks, but now they were having to fight again, and the situation had become desperate.
"At present, no one is listening. No one is taking responsibility," she said.
"We have had enough.
"Missing a day of Sativex would end Alisha's life. We want help from the community, otherwise (the authorities) will end up killing Alisha and getting away with it."