The family was given permission to use the drug but, as fulltime caregivers for two disabled children, could not afford the $1000 per month cost. The family has battled Pharmac, the government's drug-buying agency, to get the drug funded for Alisha but were refused on the grounds there was not enough evidence it was effective for epilepsy. A Kaitaia benefactor paid for the first month's supply and Work and Income covered 75 per cent of the cost for another three months.
The family has now been thrown a lifeline by the Northland District Health Board, which will fund the medication starting this month as long as it is needed and remains effective. Mrs Butt said Alisha's seizures were so bad last September the family feared she would not survive. Now her seizures lasted less than a minute, instead of hours, and she slept through the night, instead of constantly being woken. As a result the family's quality of life had improved.
Mrs Butt said she was grateful to the health board and the "very helpful" staff of Kaitaia Hospital and believed the decision would also save the health board money. She had been told the cost of treating Alisha averaged $17,000 each time she had to be admitted to hospital.
Meanwhile, the Butts have vowed to keep up the fight for other families in similar predicaments. Mrs Butt believed there was resistance to Sativex because it was derived from cannabis.
"People should be given a chance. Never mind that it comes from marijuana," she said.
The family organised a petition calling for Sativex to be funded for all patients with severe seizures and multiple sclerosis, collecting 6125 signatures in a month, mostly in Kaitaia and Kerikeri. Mr Clendon collected the petition on Monday and planned to table it in Parliament today.
NDHB chief executive Nick Chamberlain said Pharmac had given the board authority to decide whether to fund Sativex for a specific patient out of its own budget.
"It was our belief that the specific and exceptional circumstances of the patient warranted making application in this particular instance ... We've decided to fund Sativex, for this specific patient out of our Non-Community Pharmaceutical Benefit funding and are making these arrangements forthwith," he said.
Epilepsy New Zealand chief executive Graeme Ambler believed Alisha was the first epilepsy patient to receive publicly funded Sativex.
"We're really supportive of the family. We're pleased to hear the outcome," he said.
- Sativex is currently approved in New Zealand only for treating spasticity (muscle stiffness) caused by multiple sclerosis. Other use has to be approved by the health minister and it is not government funded. In exceptional circumstances Pharmac will subsidise unfunded medications under a scheme called Named Patient Pharmaceutical Assessment (the Butts' application was declined). Pharmac's clinical advisory committee is, however, currently considering whether to include Sativex on its list of funded medicines for multiple sclerosis, epilepsy and pain.
