'Life-changing' drug coming for Kiwis living with cystic fibrosis

Pharmac says it has reached the final stages of fully subsidising the drug Trikafta for people living with the disease cystic fibrosis.

It is now in the consultation process and hopes to have the drug available by April 2023.

Trikafta is already funded in dozens of other countries, and has been found to extend the lives of those with cystic fibrosis by around 27 years.

The current lifespan of someone with the disease is 35.

For 33-year-old mother of three, Chantelle de Kort, the news is 'life-changing' for her family.

"Just doing simple things like walking the block is hard now. Also housework and laughing, I can't laugh without having a coughing fit," de Kort says.

"The amount of medication and energy I have to use just to get through a day will completely change."

According to de Kort, once she is on Trikafta she will no longer have to take 30 tablets and six nebulisers a day to get the mucus out of her lungs.

Cystic fibrosis causes severe damage to the lungs, digestive system and other organs in the body.

"It prevents me from getting chest infections, which doesn't always happen, and then I have to go to hospital for weeks at a time away from the kids."

Pharmac says it has been negotiating a deal with drug maker Vertex for 18 months to supply Trikafta to New Zealand.

The drug is not cheap, with some patients paying hundreds of thousands of dollars to access it privately.

"One of the things that happened for Pharmac this year was a significant budget uplift," Pharmac's director of operations Lisa Williams says. "[Funding of] $71 million for this financial year and $127 million next year. So we have been working hard to try and reach a deal and now we have achieved that."

For 10-year-old Nora Hughson-Young, taking the drug would mean being able to be active for longer.

"I'm happy. I know that it will help me and make me more healthy," Nora says.

Her mother, Nicci Hughson, says Nora has told her she wants Trikafta so she can be "normal".

"She needs medicine every time she eats and she is often on antibiotics and gets rundown quite easily," Hughson says.

"She also misses quite a bit of school and gets tired easily. She just wants to be able to go to school camp and on the mudslide like the other kids."

Cystic Fibrosis New Zealand says more than 540 people have the disease in Aotearoa, which attacks the lungs and digestive system.

Lisa Burns, from the organisation, says she has been campaigning since 2020 for Trikafta to be available here.

"It is very difficult to put into words what this means to me, let alone to the community that are going to have years added to their lives," Burns says.

"We as a community have fought hard to get the stories out there, so people understand the really cruel nature of cystic fibrosis."

Burns says the announcement is very emotional for all the families who have lost someone to the disease.

"We can't get those families back that person, but I have every confidence that they will be celebrating, because this is very much a tight-knit community."

Health Minister praises decision

“Pharmac, not politicians, makes the decisions on what treatments to fund, but politicians decide what funding to provide to Pharmac, and health is always a priority for Labour governments,” Andrew Little says in a statement tonight.

“Since 2017, we’ve increased the medicines budget by 43%, letting Pharmac make more than 200 medicines available for thousands of people.

“Trikafta is the latest of those medicines. It has the potential to not only greatly improve quality of life for people with cystic fibrosis, but also extend their lives by up to 27 years.

“This is fantastic news for them and for their families, and comes on top of other recent announcements, like a plan to fund the spinal muscular atrophy medication Spinraza and a call for proposals for late-stage lung cancer medicines.

“It shows what a difference the Government’s budget boost is making. When we came into Government, the medicines budget – like other parts of the health system – had been starved of investment, despite record population growth.

“We’re fixing that. In 2020, we promised we’d increase Pharmac’s budget by $200 million over four years. We’ve kept that promise, and on top of that put in $71 million more this year, with another $120 million boost is in the pipeline for next year.

“The medicines budget is now 43% bigger, under the Labour Government, than it was when we were elected in 2017. This means better access to medicines and treatments for New Zealanders, helping people lead healthier lives," Little said.