Spinal Muscular Atrophy sufferer frustrated Pharmac's budget not up for scrutiny in review

The Government has made good on its promise to review drug-buying agency Pharmac, but the review won't include a look at its funding - and those pushing for life-saving drugs say that renders it useless. 

Brent Walker recently lost the ability to eat and drink. He has Spinal Muscular Atrophy, a disease that slowly makes muscles waste away. There are drugs available to treat it, but in New Zealand we don't fund them.

"[It's] soul-destroying, sometimes," Walker told Newshub. "Like, every day you wake up it's often the first thing you think about - just that frustration in the back of your head every day, that you have to fight the system to try and get treatment that lots of the world has access to."

Walker says it would be "absolutely life changing" if Pharmac funded the medicine he needs. 

"It could add decades to my life expectancy, as well as making big differences in my every day-to-day life. I might be able to eat and drink again one day, hopefully," Walker said. 

"I wasn't prepared for how hard that was going to be psychologically. It's something I struggle to put into words because eating and drinking is such a natural human instinct."

Patients like him fighting rare diseases and cancers have been begging the Government to review Pharmac, and on Tuesday the Government answered the call.

"We have a good system," said Prime Minister Jacinda Ardern on Tuesday. "Our challenge is to make it better."

Ardern made good on a promise made in the heat of the Newshub Leaders Debate last year, during which she said: "If it gives people faith in our system, then yes."

The review, to be led by former Consumer NZ CEO Sue Chetwin, will consider how Pharmac operates, how quickly it makes decisions on new medicines and whether it could do better for New Zealanders.

It won't consider whether the Government is giving it enough money. 

"Really this is about looking at the way Pharmac makes decisions within the budget that it's got," said Health Minister Andrew Little. 

That hurt Walker - he was expecting more. 

"It's like another nail in the coffin delivered with a smile," he said. 

Patient Voice Aotearoa founder Malcolm Mulholland, who is petitioning the Government to increase Pharmac's budget, told Newshub the Government seems reluctant for it to be reviewed. 

"I think there's a lack of willingness on the part of the Government to be opened up to scrutiny about what Pharmac's budget really should be."

Bowel cancer New Zealand chair Stefan Corbett says the review's a good start, but wants urgent action from it. Bowel cancer is New Zealand's second deadliest cancer, and new drugs haven't been funded for 20 years.

"What it creates is a two-tiered system where people that can afford new drugs live longer and I don't know if that's the way we want things in New Zealand," he told Newshub.

While the review may eventually increase the transparency and speed at which Pharmac chooses what drugs to fund, reviews don't pay for life saving drugs - that's up to the Government.