Pharmac signs deal to fund life-saving cystic fibrosis drug Trikafta

Pharmac has signed a deal to fund the life-saving drug Trikafta to help Kiwis living with cystic fibrosis.

It will be funded for eligible cystic fibrosis patients aged six years old and above from April 1, 2023. The medicine is supplied by Vertex Pharmaceuticals.

The fight to get it funded started over two years ago after Bella Powell, now 19, told Newshub in 2020 how she needed the "miracle" drug to live.

Today, after hearing the news that Trikafta would be funded in New Zealand, she was speechless.

"Oh my God. I don't know what to say. My heart is going so fast. What? How did this happen?" she told Newshub.

While the drug is listed at $324,000 per person per year, Pharmac negotiated a significant, but commercially sensitive, discount.

Pharmac's director of operations Lisa Williams said although it will cost New Zealand "many millions of dollars", it is money worth spending.

"Our calculation was that people who used Trikafta would get 27 more years of good health using this product. That's amazing," she said.

And the pills won't cost anything for users.

"They will be completely free," Williams said.

There are 388 people who will be eligible for funded Trikafta.

Nineteen-year-old Powell now lives in Sydney since Australia already subsidises Trikafta. But the reality that her home country will now fund the drug sunk in as she called her sister to tell her the good news.

"From April next year, Trikafta is funded for everyone over the age of six," she tearfully told her sister.

"Does that mean you can come home?" her sister asked, and Powell confirmed, "it does".

Bella Powell was stoked to share the news with her sister that Trikafta would be funded for Kiwis.
Bella Powell was stoked to share the news with her sister that Trikafta would be funded for Kiwis. Photo credit: Newshub.

But it means so much more than coming home - it actually means life. 

Cystic fibrosis is a death sentence for those that have it. It causes the body to make thick, sticky mucus that plugs up tubes and passageways and puts massive amounts of pressure on the lungs, wearing them out. 

Trikafta changes all that. Powell started the fight to get funding for the drug in New Zealand two years ago.

"I was told without anything, I would have two years. As a 15-year-old, that is devastating to hear." 

Sir Bob Elliott, one of New Zealand's greatest medical minds, funded the first round of Trikafta for Powell out of his own money. He was terminally ill at the time.

"I felt I just couldn't let Bella die knowing there was a drug out there that could help her," he told Newshub in 2020.

Sir Bob, a global expert on cystic fibrosis, died just weeks after this interview, in which he called for a Trikafta deal to be done. 

"It would complete a life's work, actually," he said. "To see this through to being no longer a fatal disease, that would please me no end."

Powell pays tribute to Sir Bob with a tattoo on one of her lungs, which are crushed by cystic fibrosis without Trikafta.

"I hope he feels at peace now knowing that the fight is over," Powell said.

Trikafta campaigner Ed Lee, who has cystic fibrosis, has been paying for his own pills. He was told about Trikafta's funding by Pharmac chief executive Sarah Fitt while Newshub was present.

"Thank you so much. I want to give you a hug. I want to give you a hug. Thank you," Lee said to Fitt.

Williams revealed there was emotion on their side too.

"Well, I can tell you that the negotiation team has had some happy tears at securing this arrangement," she said.

Sabrina Barbic, the senior country manager for Vertex Australia and New Zealand, said funding Trikafta is a "significant milestone" for Kiwis living with cystic fibrosis.

"We are pleased that Pharmac has recognised that every eligible patient should have access and acknowledges the value Trikafta can bring, not only to people living with cystic fibrosis and their caregivers, but also the wider society."

Pharmac is now seeking public consultation on its proposal to fund Trikafta. 

On finalisation of the process, New Zealand will join more than 35 other countries - including Australia, Canada, Denmark, Finland, Spain, Germany, Austria, Slovenia, Croatia, France, Italy, and the United Kingdom - where Trikafta is broadly reimbursed for eligible cystic fibrosis patients.