'Super happy' at deal to fund life-extending drug

Siblings Emma and Jake Gawn require cystic fibrosis medication Trikafta, which is not yet funded...
Siblings Emma and Jake Gawn require cystic fibrosis medication Trikafta, which is not yet funded in New Zealand.
Pharmac has reached a provisional agreement to fund medication that could provide those with cystic fibrosis up to 27 more years of full health.

The announcement yesterday was welcomed by former Oamaru resident Jake Gawn, one of about 570 people in New Zealand who have the life-threatening genetic condition.

It mainly affects the lungs and digestive system, and specialists estimate the life expectancy is currently in the mid-to-late 30s.

The 24-year-old has already made plans to move to the United Kingdom, where the drug Trikafta is funded, next year.

Trikafta treats the underlying cause of cystic fibrosis, but a pricetag of $330,000 has put it beyond the reach of many in New Zealand.

Mr Gawn said he was "super happy".

"It opens up a whole lot more doors for everyone, especially for those that are in desperate need of it now."

He would still be moving but was pleased he would be able to come home again without sacrificing his health.

He was thankful to everyone who had campaigned for Trikafta to be funded, he said.

His sister Emma also had the condition, and her health has improved drastically since starting the medication.

She left for Australia in August this year in order to access the drug, because Budget 2022 had dashed her hopes that Pharmac would have enough funding to make Trikafta available.

Now the situation has changed, and New Zealand is set to join the more than 30 other countries where the drug is funded.

This is seemingly due to a better offer by supplier Vertex.

Pharmac’s director of operations Lisa Williams said the announcement followed the organisation’s budget increase in May and commercial negotiations with Vertex.

"I am thrilled to announce today that we are initiating consultation on the funding of Trikafta for people aged 6years and above with cystic fibrosis who meet certain eligibility criteria," she said.

The drug could make a substantial difference to the lives of those dealing with the condition, significantly reducing the impact of symptoms.

"Trikafta could give people with cystic fibrosis up to 27 more years at full health, when compared with supportive care," she said.

Funding of the drug is proposed to start April 1 next year.

Consultation is available on the Pharmac website for anyone wanting to have their say.

This was how the organisation ensured people most set to benefit from medicines would be able to access them.

“We have been saying that we wanted to fund Trikafta — and now we are a step closer," she said.

Health Minister Andrew Little said Pharmac, not politicians, decides what treatments to fund, but the Government had increased the medicines budget by 43% since 2017.

This included an additional $71 million this year.

fiona.ellis@odt.co.nz

 

 

 

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