In 25 sleeps, New Zealanders with cystic fibrosis will be handed a chance at a future, according to a man with the condition, thanks to a landmark decision by Pharmac to fund the powerful drug Trikafta.
"I can't wait to see what the cystic fibrosis community is going to do with their life," Ed Lee, said.
"Maybe they'll be doctors, maybe they're going to be teachers, maybe they'll cure cancer. They could be the CEO of a company that's going to solve the climate crisis. We've now given these people a chance to live."
Pharmac confirmed on Tuesday that Trikafta would be funded for eligible people over the age of 6 from April 1. It also said it would fund two new medicines – pembrolizumab (branded as Keytruda) and atezolizumab (branded as Tecentriq) – for people with locally advanced and metastatic non-small cell lung cancer, who meet certain eligibility criteria.
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Lower Hutt woman Chantelle De Kort, 33, said Trikafta would mean she can go on walks with her three children, work again and most importantly, wouldn't have to relocate to Australia.
Without Trikafta, De Kort's cystic fibrosis is a full-time job - she must use a nebuliser twice a day and do physiotherapy to clear mucus from her lungs and she would spend about a fortnight in hospital twice a year.
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Lower Hutt mum Chantelle de Kort, who has cystic fibrosis, with her daughters Charlie de Kort (left) and Ella de Kort, during a hospital stay. The family is celebrating news the life-changing drug Trikafta will be funded from April 1.
Now, she said: "I'm looking forward to having a job.
"Me and my husband can even have a conversation about retirement. Before, it wasn't our future."
Lee said: “It’s the fairest and right thing to happen. We don't deserve to die. And now people can dream. They can live, they can have a family, they can go and study.”
Lee, along with the CF community, has been calling for “wonder drug” Trikafta to be funded for more than two years. Those wanting Trikafta in the meantime faced an annual price tag of $330,000, or a move to one of the 31 countries where it’s funded, such as Australia.
Kathryn George/Stuff
Pharmac on Tuesday announced it is funding Trikafta and two new medicines for lung cancer.
Pharmac announced its intention to fund the treatment (elexacaftor with tezacaftor and ivacaftor, branded as Trikafta) late last year, after initially receiving an application from supplier Vertex in July 2021.
This was welcomed by Cystic Fibrosis New Zealand’s Lisa Burns who, at the time, called it “literally a Christmas miracle”.
“It’s such a historic, incredible moment – I was just stunned,” she said at the time.
On Tuesday, Pharmac director of operations Lisa Williams said it was “thrilled to announce that Trikafta will be funded and available from next month”.
“This decision is a significant milestone. To have a medicine with this level of investment secured for our community is a big deal, and we are grateful to everyone who has been a part of this process.”
Andy MacDonald / Stuff
Trikafta is going to be a literal lifesaver for Oakura's Brett Holdcroft. Brett's mum Penny talks about finding out the drug is going to be funded.
The outcome does not provide a new funded medicine for everyone within the cystic fibrosis community, however.
“Our work in this space does not stop at this decision,” Williams said.
Consideration of wider access to ivacaftor, branded as Kalydeco, was already under way, and Pharmac had told Vertex it “would welcome a funding application” for other medicines, such as tezacaftor with ivacaftor, branded as Symdeko.
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 mid- to late-30s.
While Trikafta is not a cure, it stops further lung damage, so the earlier those with the condition can access the drug, the greater their quality of life.
Sophie Harris/Stuff
Cystic Fibrosis New Zealand chief executive Lisa Burns earlier told Stuff that Pharmac’s proposal to fund Trikafta, announced in December, was a “historic, incredible moment”.
In a statement, Vertex said it was “delighted” Pharmac confirmed New Zealanders as young as 6 living with CF would be able to access Trikafta from next month.
Pharmac on Tuesday also announced it will fund two new immunotherapy medicines – pembrolizumab (branded as Keytruda) and atezolizumab (branded as Tecentriq) – for people with locally advanced and metastatic non-small cell lung cancer, who meet certain eligibility criteria.
Williams said lung cancer is the leading cause of cancer-related mortality in New Zealand, so “we’re really pleased with the outcome of having two new treatment options available”.
The funding decision would have a “substantial impact” on those affected and their whānau, she said.
Lucy Elwood from the Cancer Society said funding these treatments would “lead to massive improvements in cancer outcomes for lung cancer patients”.
Roche Products (New Zealand) general manager Alex Muelhaupt said some big benefits likely to arise are improving outcomes for Māori, and changing the social stigma of lung cancer.
“We hope better treatment will reduce the stigma associated with the disease, alleviating some of the less visible burden on patients.”
Cystic fibrosis drug Trikafta, Keytruda for lung cancer to be funded - Stuff
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