A Northland couple say medical marijuana has dramatically improved their daughter's once uncontrollable epilepsy - but they can't afford to keep giving her unfunded medicine which costs almost $1000 a month.

Alisha Butt, 20, lives near Kaitaia with her parents Royd and Sushila Butt and her brother Ashneel, 23.

Both children are intellectually disabled due to a chromosomal abnormality but Alisha also has severe epilepsy.

Medical cannabis Sativex.
Medical cannabis Sativex.

Mrs Butt said Alisha had tried every government-funded epilepsy drug without success.

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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 got 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.

Work and Income 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 fulltime carers but they say that amount is manageable. The couple have taken heart from Associate Health Minister Peter Dunne, who said on Saturday that trials for medical marijuana should be encouraged despite "prejudice" from the medical profession.

The debate over medical marijuana has sparked up after the Australian government announced a licensing scheme to allow the cultivation of cannabis for medical trial purposes this month. Mr Dunne said New Zealand was "highly likely" to follow suit if the trial products were approved. He told TV3's Q+A programme it would be "very, very good" to get clinical trials in New Zealand.

Mrs Butt said Alisha's epilepsy had improved dramatically since she started taking the drug. 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.

The family is worried about what will happen when the Work and Income subsidy runs out, however. Mr Butt said Alisha's seizures were so intense before she started Sativex, they feared a return to her previous state could be dangerous or even fatal.

If the medication was government-funded Alisha and the rest of the family would have a better quality of life. It would also reduce stress he described as "beyond belief". "They say it [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's at least two other families we know of in the same situation," he said.

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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.

Sativex is approved in New Zealand only for treating spasticity (muscle stiffness) caused by multiple sclerosis. Other use 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). The Butts' application for an 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 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.

Meanwhile, Whangarei epilepsy sufferer Jade Guest has improved dramatically since her mother Jessika took her and brother Ethan to Colorado last year so Jade could be treated with medical marijuana. Jade was suffering up to 40 seizures a day before starting treatment, and Mrs Guest said that since trying medical cannabis, Jade's cognitive abilities and quality of life had improved.