Pressure is mounting on decision-makers to make a call on funding for the breakthrough drug Trikafta to end a painful waiting game for people with cystic fibrosis.
Patients, advocacy groups, drug-buying agency Pharmac and the Government are stuck in a feedback loop on Trikafta, with Pharmac saying it clearly wants to fund the medicine but can’t with its current budget. This has led to patient groups urging the health minister to step in.
“We need a yes or no. And if it’s going to be a no, stop torturing us by delaying it,” patient advocate and Wellington man Ed Lee said.
Lee has taken Trikafta for two-and-a-half years to treat his cystic fibrosis, privately funding it at $330,000 a year – a price tag which puts the drug out of reach for most people.
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Lee said it now came down to Government stepping in and increasing the medicines budget, as Pharmac had clearly indicated it wanted to fund Trikafta.
But Health Minister Andrew Little said he had no intention of telling Pharmac what to do. “Politicians do not make decisions about what medicines will be funded. That’s Pharmac’s job and that’s the way it should be,” he said.
“Some medicines cost hundreds thousands of dollars for just one person. Pharmac’s job is to assess which should be bought. Trikafta is at the expensive end of the scale and is on Pharmac’s Options for Investment list.”
Mark Taylor/Stuff
Minster of Health Andrew Little says Trikafta is at the expensive end of the scale for medicines and Pharmac must make its on decision on the medicine. (File photo)
Trikafta is one of 75 medicines on the list.
Budget 2022 gave Pharmac an extra $71m this year and $120m next year, but as the agency told the Health Select Committee in June, funding Trikafta would take almost all it’s new money.
But Pharmac’s latest assessment of Trikafta outlined how it could bring people with cystic fibrosis a further three decades of “full health”, compared to current treatments.
The advice from its Pharmacology and Therapeutics Advisory Committee (PTAC), released on Monday, recommended the drug be funded for patients aged 6 and over, with medium priority.
Supplied
Pharmac director of operations Lisa Williams says the drug has been re-ranked on its funding wishlist as a result of the recommendation, but it’s unclear how close it is to the top.
Pharmac director of operations Lisa Williams said, “if Trikafta were funded, there would be some savings to the health system through the reduction of the need for hospitalisations, lung transplants and supportive care”.
“We also estimate that Trikafta could give people with cystic fibrosis who are aged 6 and over a longer and improved quality of life – specifically benefits equivalent to 27 more years at full health when compared to current funded treatments.”
In response to the latest findings, Lee said: “Hold on, 27 years – that’s medium priority?… Almost double the life expectancy and it’s still not funded.
“You never know what these other Kiwis are going to do with their life. You know, they might be the prime minister, they might be surgeons, but [Pharmac] is saying … we can’t strike a deal.”
ROSS GIBLIN/STUFF
Hamish Mountfort, who has the degenerative condition cystic fibrosis, is unlikely to live beyond his 30s without access to the drug Trikafta. He and his mum, Emma Brewerton, want the Government to fund the drug. (First published April 28, 2022)
Cystic fibrosis causes lung function to decline over time and can lead to chronic lung infections, liver failure, cirrhosis of the pancreas, risk of diabetes, frequent stays in hospital, and a life expectancy of about mid- to late-30s.
Cystic Fibrosis New Zealand chief executive Lisa Burns wanted to see negotiations progress between Pharmac and Vertex or for the Government to step in and make a decision.
“There’s been enough assessment, reassessment and reviews. The evidence of effectiveness is proven, it’s now time for decisions and action.”
The approximate annual social, economic, and financial impact of cystic fibrosis was $116 million, Burns said – which the charity claimed was almost double what would be needed to fund Trikafta.
Ross Giblin/Stuff
Hamish Mountfort, 22, spends hours each day breathing into a nebuliser. (File photo)
The latest recommendation has meant Pharmac has re-ranked the drug on its funding wishlist, but would not say how close it is to the top.
Pharmac has also not said how much the drug would save the health system, with key figures redacted in an economic analysis released on Monday.
The current offer from supplier Vertex meant the cost of the drug would still outweigh the savings to the health system, Pharmac confirmed. But negotiations were ongoing.
Current treatments for cystic fibrosis in New Zealand are largely reliant on patients using nebulisers at home to help to clear mucus from their airways and taking pancreatic enzymes.
Pharmac funds another cystic fibrosis drug called kalydeco but it does not treat as many people.
The latest assessment “reinforces that it continues to be a medicine we want to fund,” Williams said.
Drug safety agency MedSafe has approved Trikafta for use in New Zealand.
Calls for decision on Trikafta as new advice shows health system savings and decades more life for patients & Latest News Update
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