Budget 2021: Cystic fibrosis fighter livid at Pharmac's budget

What is the Budget? Video / NZ Herald

A cystic fibrosis fighter who met with Finance Minister Grant Robertson last month to discuss Pharmac's budget says he's absolutely livid.

"More children are going to die simply because the Government won't provide Pharmac with the funding it desperately needs to keep Kiwis alive," Ed Lee, 38, told the Herald.

His comments come after Robertson announced the drug buying agency would get an extra $200 million over the next four years, a boost that will see it receive more than $1 billion a year in funding.

Health Minister Andrew Little said it was one of the biggest increases Pharmac had ever had – and would help an estimated 370,000 patients a year.

However, it fell short of Pharmac's wishlist, released under the Official Information Act last month, which revealed more than $400 million was needed to "catch up". There was 73 medicines the agency determined as "should be funded but there was not the budget".

Meanwhile, thousands of Kiwis have been left either begging for money to survive or they die waiting.

Lee is one. The Wellingtonian expected his time to already be up. Instead, he pays $430,000 a year to stay alive.

He counts himself lucky because hundreds of other Kiwis battling cystic fibrosis can't afford to pay for the "miracle drug" known as Trikafta.

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Cystic fibrosis is a life-threatening genetic disorder causing difficulty breathing and coughing up mucus as a result of frequent lung infections.

People with the condition were expected to die 50 years younger - until Trikafta.

When the Covid-19 pandemic struck New Zealand, Lee was on his way to the US in his final race for survival.

Weeks prior he was hospitalised with a serious lung infection and given a death sentence.

But within 12 hours of taking Trikafta, the drug started to take effect - his lung function went from 28 to 50 per cent in a week.

"I no longer had to cough which was unbelievable, I could run, I did the Routeburn Track, something that I could have never have done before taking the drug."

Cystic fibrosis survivor Ed Lee says he is livid at the Government's Pharmac budget. Photo / Supplied

Now, he's signed up to KiwiSaver, is planning a family and expects to live a long life - though at a hefty price tag.

He met with Robertson to fight for Kiwis who couldn't afford to pay for the drug.

"Realistically, he's just shown me that doesn't matter."

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Cystic Fibrosis New Zealand chief executive Jane Bollard said she was "absolutely deeply disappointed" with the Pharmac budget, saying it didn't even come close to the amount needed to catch up, let alone fund new drugs.

"The decision ignored a petition, signed by nearly 100,000 Kiwis, calling on the Government to double the Pharmac budget and that's just so disappointing."

Cancer Society of New Zealand medical director and oncologist Chris Jackson said this year's Budget acknowledged a much stronger focus on cancer prevention and screening.

"But it's much less clear how much of Pharmac's extra $50 million per year will be directed to cancer drugs."

He said Pharmac was "big black box" but there needed to be a clear investment to help patients with advanced or terminal cancer.

"We are helping those getting cancer tomorrow but we still need to help those at the other end," Jackson said.

"New Zealanders know that our access to cancer drugs is poorer and slower than comparable countries. The funding increase to Pharmac doesn't necessarily mean more cancer drugs for people affected by cancer," he said.

Meanwhile, The Royal New Zealand College of General Practitioners were pleased the Pharmac funding would help more families access life-saving medicines.

Act Party health spokesperson Brooke van Velden described the funding boost as "grotesque political theatre", saying people shouldn't have to wait for the Budget to get their medicines funded each year.

She said Act continued to call for Pharmac's funding to be reviewed.

"It's what's fair and right for people who are suffering from chronic pain and diseases," van Velden said.

The health budget also saw the first tranche of funding under the new health reforms, allocating $486 million to move from the DHBs model to a central Health NZ agency.

The Budget established the Māori Health Authority, which will be set up out of a $243 million allocation for Māori health.

Those reforms would see DHBs eventually scrapped, but the Budget included $2.7 billion for DHBs over the next four years. Primary health care would also get a boost of $46.7 million.

Little said that was needed to ensure GPs could continue to offer affordable health care as the population grew.

The Government also announced a $28 million spend over four years for adult cochlear implants with advocacy groups saying "it's brilliant news".