A Kaitaia couple say medical marijuana has dramatically improved their daughter's once uncontrollable epilepsy, but they can't afford to keep giving her unfunded medicine that costs almost $1000 a month.
Alisha Butt (20) lives with her parents Royd and Sushila Butt and her 23-year-old brother Ashneel. Both children are intellectually disabled due to a chromosomal abnormality, but Alisha also has severe epilepsy.
Mrs Butt said Alisha had tried every government-funded epilepsy drug, without success.
After three emergency trips to hospital in five days for unstoppable seizures - the worst lasted 20 hours - doctors suggested she try a form of medical cannabis called Sativex.
Her specialist obtained permission from the Minister of Health in May, but because of the cost, $990 a month, the family couldn't afford to start until September, when a Kaitaia resident sponsored a month's supply. WINZ is now helping pay for the drug for a three-month period, leaving the family to find $290 a month.
Mr Butt is retired, and both are full-time carers, and that cost was manageable. The family is worried about what will happen when the subsidy runs out, however, Mr Butt saying his daughter's seizures had been intense before she started using Sativex, and they feared a return to her previous state could be dangerous, or even fatal.
Mrs Butt said Alisha's epilepsy had improved dramatically. She had not been to hospital since starting Sativex six weeks ago, and her seizures now lasted seconds or minutes, instead of minutes to hours.
Support worker Georgia Tait, of Mangonui, said everyone involved in Alisha's care had noticed a difference. As well as the reduced seizures she was more alert, had regained some speech, and was better able to move around on her own.
If the medication was government-funded Alisha and the rest of the family would have a better quality of life," Mr Butt added. It would also reduce stress that was "beyond belief".
"They say [Sativex] hasn't been properly trialled in New Zealand, but as far as we're concerned it's made a big difference to Alisha, and there are at least two other families we know of in the same situation," he said.
Mrs Butt suspected there was resistance to approving the medication because it was derived from cannabis.
"If it's helping a person it should be available and it should be funded," she said.
Currently Sativex is approved in New Zealand only for treating spasticity (muscle stiffness) caused by multiple sclerosis.
Other use of te treatment has to be approved by the Health Minister. It is not government-funded.
In exceptional circumstances the government's drug-buying agency, Pharmac, will subsidise unfunded medications under a scheme called Named Patient Pharmaceutical Assessment (NPPA), but the family's application for a NPPA was declined. They were told it was because there was insufficient evidence that Sativex would treat Alisha's seizures.
Pharmac operations director Sarah Fitt said the agency's clinical advisory committee was currently assessing an application to include Sativex on its list of funded medicines for multiple sclerosis, epilepsy and pain.
If the committee made a positive recommendation, Pharmac would still have to weigh up funding Sativex against other drugs that were not yet government-funded.
Pharmac does not comment on NPPA funding applications for individual patients, but the agency's chief executive travelled to Kaitaia last week to meet the family.