Letter to the Editor, Tuesday December 22, 2015

Policy first

We have a daughter who has life-threatening seizures (Cannabis med works but too costly, October 27).

She used to have seizures lasting from hours to 20 hours. We live in Kaitaia. We were told by the specialist in September she is deteriorating, and she may die.

We have tried all funded epilepsy drugs available in New Zealand. We started her on prescribed Sativex (medicinal marijuana), and she has improved by over 50 per cent, and she is on a low dose. Since introducing Sativex in September she has not been in hospital.

The cost of this medication is $990, but some pharmacies charge as high as $1300. Pharmac and the Ministry of Health won't fund this medication.

We have been told by the Pharmac CEO that they don't consider the consequences of withdrawing the medication. Even the doctors have confirmed that our daughter may die. Policy and money are more important than life. They also said our daughter's case is exceptional, meaning there are not many people like her.

If our daughter has to be hospitalised it will cost taxpayers and the state about $15,000 upwards per month, which includes helicopter transfer of $3599 from Kaitaia to Whangarei, ICU cost and medication of $6725 per day. But Sativex will cost only $990. Pharmac reckons they considered this. We find it strange. Minister of Health Peter Dunne is hopeless.

Sativex has to be approved by the Minister of Health for a person to use, and is then prescribed by a specialist (not GP). This drug is legal to use in New Zealand. Our daughter has got approval from the Minister.

We are petitioning to the House of Representatives to fund Sativex for life-threatening seizures and multiple sclerosis. We are collecting signatures of people who will support this. We are NOT asking for money, but only names and signatures to support this petition please.

SUSHILA AND ROYD BUTT

Kaitaia

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Anyone who would like to support the family is welcome to make contact on (09) 408-3012, (027) 779-3495 or alisha.b@xtra.co.nz for a petition form. It can also be signed at the Northland Age office.