Man who spent $330,000 a year self-funding cystic fibrosis drug Trikafta welcomes Pharmac funding

By RNZ

A Wellington man who suffers from cystic fibrosis says he is in disbelief that public funding for a “life-changing” drug that treats his condition is being proposed.

Pharmac has reached a provisional agreement with medicine supplier Vertex to fund Trikafta, along with some cancer drugs, subject to consultation.

Cystic fibrosis advocates and New Zealanders with the diseases have expressed delight at the decision, describing it as “an early Christmas gift”.

Ed Lee, with support from his family, has self-funded access to the drug for the past two-and-a-half years, at an annual cost of $330,000.

“I acknowledge it’s a privileged position,” he said.

His days have typically consisted of “hours and hours” of treatment each day.

“You’re sucking salt water every morning for hours, you’re inhaling antibiotics just to stop your lungs from deteriorating.

“You’re constantly in and out of hospital.”

Other New Zealanders with the condition “who have felt trapped” had moved offshore to get subsidised access to Trikafta, he said.

“I have contemplated it. It was in the back of my mind that one day I’m going to have to move to Australia, or any one of the other 30 countries around the world that have access to Trikafta.

“I didn’t want to leave my family and friends behind. But it’s a very real prospect, when Trikafta is the only way you’ll be able to survive.”

The Pharmac proposal may prompt some Kiwis offshore to return home, he said.

“The days of hospital admissions and antibiotics and lung transplants, they’re all for things of the past.

“It means that people living with CF [cystic fibrosis] are now able to achieve their goals, their dreams and their aspirations, as they’re going to have an extra 27-plus years added to their lives.

“So people will definitely come back home and be with their families.”

Cystic Fibrosis NZ chief executive Lisa Burns said she was “taken aback” by the announcement.

She suggested tens of millions of dollars could be saved with the “social, economic and financial impact” of the disease estimated at $116 million per year.

“The estimated cost of Trikafta would’ve been significantly less than $60m.

“People who are living with cystic fibrosis, particularly as they develop additional complications, their health deteriorates.

“The pressure that puts on the health system becomes significant to the point where they may end up in a situation if their health declines that they need a lung transplant, which is a very expensive surgery.

“We want to prevent as many people as possible from having to go through that.”

Minister of Health Andrew Little said Pharmac’s plan was another example of the Government’s $200m boost to the medicines budget helping New Zealanders.

“Since 2017, we’ve increased the medicines budget by 43 per cent, 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.”

It is proposed funding of Trikafta starts in April next year.