A support group for people who want to use medical marijuana says more research - and a shift in attitudes - is needed before the medicine stands a chance of being publicly funded.
Earlier this week, the Advocate detailed the struggle of the Butt family of Kaitaia who have two severely disabled adult children, one of whom suffers seizures so intense and prolonged she often ends up in hospital. Medication has had no effect.
However, since Alisha Butt, 20, was granted permission to use a form of medical cannabis called Sativex her seizures have eased dramatically, her parents say. The problem is they will not be able to afford the unfunded medicine, which costs around $1000 a month, once a three-month Work and Income subsidy runs out.
The founder of medical cannabis support group United in Compassion, Toni-Marie Matich, said it was unlikely Sativex would be publicly funded anytime soon because it had not been trialled for epilepsy or with children. So far it was approved only for multiple sclerosis.
Ms Matich had treated her own daughter's severe epilepsy with cannabis oil, reducing her seizures by 50 per cent for two years before it stopped being effective.
Research was being carried out worldwide into which cannabinoid-based medicines were effective against epilepsy.
"We need to be patient and await the outcomes of those," she said.
The group's advisory board had advised Sativex was not suitable for epilepsy because it contained the cannabinoids THC and CBD in a 1:1 ratio. THC could increase seizures unless it was offset by a higher ratio of CBD.
The same company that made Sativex was now working on a new drug that was high in CBD.
"I know a handful of parents who've used Sativex for treating epilepsy and see remarkable results in the first two to six weeks, then they start seeing adverse effects."
The group had many patients on its database who did not apply for Sativex because they could not afford it or their doctor did not support it. The application has to come from a GP.
Ms Matich said progress on medical cannabis was being held back by conservative attitudes and people who did not understand it was a health issue separate to recreational use. As a result, patients who had run out of other treatment options were vulnerable to the black market and snake-oil sellers.
Ms Matich hoped a national symposium the group was organising next April would help change attitudes.
Epilepsy New Zealand chief executive Graeme Ambler backed Ms Matich's call for more research.
" It's a very emotional subject and there's lots of positive comment internationally, but the fact is very little is known."
Meanwhile, Associate Health Minister Peter Dunne said trials of medical marijuana should be encouraged despite prejudice from the medical profession.