A group of patient advocates are calling for Pharmac's billion-dollar budget to be doubled so it can buy more life-saving and life-prolonging drugs for sick Kiwis.

Patient Voice Aotearoa launched its campaign on Tuesday, accusing the Government of sitting on a $7.5 billion surplus and waiting for a "rainy day" while people are dying because drugs that could help them aren't funded in New Zealand.

The group is chaired by Malcolm Mulholland, whose wife Wiki has stage-4 breast cancer.

The campaign - "All I want for Christmas is to live" - calls on New Zealanders to sign a petition asking the Government to double Pharmac's funding and look at reforming the agency.

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It's backed by nearly 30 patient advocacy groups, with more than 17000 people signing the petition.

There are also plans to directly target politicians and build political support for doubling funding.

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They say doubling Pharmac's budget would bring it close to the spending per capita seen in the UK and Australia, while tripling it in two years' time would pull New Zealand into line with other wealthy OECD countries.

But the health minister says it's not a simple matter to compare New Zealand's pharmaceutical spending with other countries, and no matter what Pharmac's budget, there will always be calls for more spending.

Among those who told their stories at the launch were Emily and Eddie Porter, who took a petition to Parliament to get funding for Kalydeco, a life-changing cystic fibrosis drug.

Eddie and Emily Porter want Pharmac's budget boosted so it can fund drugs like Kalydeco, which could extend the life of cystic fibrosis sufferers like their son Otis. Photo / Supplied
Eddie and Emily Porter want Pharmac's budget boosted so it can fund drugs like Kalydeco, which could extend the life of cystic fibrosis sufferers like their son Otis. Photo / Supplied

Their son Otis was diagnosed as a baby with cystic fibrosis, which damages the lungs and shortens life expectancy.

Pharmac has recommended Kalydeco be funded but it's not known when that will take effect.

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In a video at the campaign launch the Porters expressed their frustration at knowing there is a treatment that could limit Otis' suffering and give him a longer, better life.

"Knowing that it's there but it's not available because we live in New Zealand is heartbreaking," Eddie said.

The family had considered moving to Australia but wanted to fight for Kalydeco to be made available here. Nearly 11,000 people signed Eddie's petition - and other petitions like it have garnered thousands more signatures.

Mulholland said Pharmac currently had more than 100 medicines on its waiting list, not including drugs currently being assessed.

He said Pharmac's medicine spending was just over 5 per cent of the Vote Health budget, compared to an OECD average of 16 per cent.

Patient Voice Aotearoa chair Malcolm Mulholland with wife Wiki, who is battling stage-4 breast cancer. Photo / Supplied
Patient Voice Aotearoa chair Malcolm Mulholland with wife Wiki, who is battling stage-4 breast cancer. Photo / Supplied

But Health Minister David Clark said it was not a simple matter of comparing New Zealand's pharmaceutical spending with that of other countries.

"Pharmac is the reason New Zealanders pay some of the lowest prices in the world for medicines – and that means more people can get access to the drugs they need," Clark told the Herald.

The current Government had put more money into the agency so it could buy more medicines, bringing its budget to $1.015 billion.

"Comparing medicine spends between countries is not straightforward, but we know that the buying power of Pharmac means it can negotiate lower prices for medicines.

"In recent months three new cancer medicines have been funded, as well as a new treatment for multiple sclerosis, more meningococcal vaccines and widened access to long-acting reversible contraception.

"There will always be an endless call on Pharmac for funding, as there is on drug funding worldwide, because pharmaceutical companies are constantly developing new products."