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Cystic fibrosis advocates hand over petition for 'life-changing' drug

Monday, 28 March 2022

Brett Holdcroft, 11, has cystic fibrosis. He wants Pharmac to fund a drug, so he can live longer and be a cardiologist. (Video first published May 2021)

A petition of more than 43,000 names, calling on the Government to urgently fund Trikafta, a 'miracle drug' for people with cystic fibrosis, has been handed to Labour MP Shanan Halbert.​

At Auckland's Cornwall Park, Halbert​ formally accepted the petition on behalf of the Health Select Committee chair Dr Liz Craig, and will present the petition to Parliament on Tuesday.

The families of those with cystic fibrosis gathered to watch the event, holding framed photos of their loved ones who couldn’t be there due to the risk of cross infection.

The petition was launched, in August 2020 by Carmen Shanks​, who has cystic fibrosis.

**READ MORE:

* Auckland mother 'pulled from brink of death' by life-changing cystic fibrosis drug

* These lives can’t wait; New Zealand needs to fund this drug now

* The life-changing drug that could help Brett, 11, live long enough to fulfil his dream

**

More than 500 roses were also placed on the steps to represent the Kiwis with cystic fibrosis who could be helped if the drug became publicly funded.
More than 500 roses were also placed on the steps to represent the Kiwis with cystic fibrosis who could be helped if the drug became publicly funded.

Speaking at the event she said Trikafta was essential to improve the quality of life and life expectancy of CF patients in New Zealand.

While there was no cure for CF, Trikafta was described as a lifesaving drug, that could turn cystic fibrosis into a manageable illness.

But as Trikafta is not funded by Pharmac, the only way New Zealanders can currently access the drug is privately – at a cost of about $330,000 per year per person.

Pharmac has said it wants to fund the medicine, but previous reported figures claim an extra $60 million in funding would be needed to provide the drug to the almost 400 people who would be eligible.

Since being approved by the FDA in 2019, Trikafta had been made available in 30 countries, and from April 1 it will be accessible in Australia.

Cystic Fibrosis New Zealand chief executive Lisa Burns said, for many, Trikafta was the last hope.
Cystic Fibrosis New Zealand chief executive Lisa Burns said, for many, Trikafta was the last hope.

“It is truly mental torture to know that there is something as effective and life changing as Trikafta, but it is out of reach for me because of the country I live in,” Shanks​ said.

Receiving the petition from Shanks​, Halbert​ acknowledged the hard work and advocacy of those behind the petition.

“We are committed to improving the health outcomes of New Zealanders, through greater access to safe and effective medicines,' he said.

“Over the past four years, the Government has gradually increased the combined pharmaceutical budget by 25 per cent to 1.1 billion per year, to ensure this happens.”

Cystic Fibrosis New Zealand, chief executive Lisa Burns​ said, for many, Trikafta was the last hope.

“They call it a wonder drug or a miracle drug for a reason, because it literally has the ability to transform someone’s life.

“Trikafta needs to be funded now. Ongoing delays mean that people with cystic fibrosis continue to struggle. They are sick now, and they are in hospital now.”

CORRECTION: An earlier version of this article stated Trikafta cost private patients $430,000 per year per person. Pharmac has confirmed the price is $330,000 per year per person. (Amended at 2.42pm on March 29)