Ashlee Butler has cystic fibrosis and on Friday got the opportunity to ask Deputy Prime Minister Grant Robertson some hard questions during his visit to New Plymouth.
As a Taranaki 27-year-old asked the Deputy Prime Minister why a life-changing drug was still not funded, she apologised for her heavy breathing – she only has 38 per cent of her lung function.
Ashlee Butler has cystic fibrosis (CF), a genetic disorder that affects breathing and digestion, and was one of many people affected by the disorder who came to listen to Grant Robertson speak in New Plymouth on Friday.
She asked Robertson why Trikafta, a drug which can turn CF into a manageable illness, was funded in other countries, but not New Zealand.
He admitted it was a “challenge” due to Pharmac’s funding model, but said the Government was undertaking a review, looking into how it could fund drugs for rare illnesses.
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Robertson, who is also Minister of Finance, was in town to speak at two events as part of his budget roadshow.
The first was for the region’s not-for-profit sector, and the second was a Taranaki Chamber of Commerce lunch.
Speaking to the not-for-profit sector, he highlighted how Pharmac would get a $191 million boost through the Budget, but admitted that Trikafta might be one of those that still missed on funding.
“I recognise it’s a real difficulty,” Robertson said.
He explained he had asked officials to look into how Australia was funding Trikafta.
Butler was standing at a table with CF Taranaki chairperson Shelley Gruchy, who has a daughter with CF, Joy Fabish, who has two children with CF, Joan Tuffery, who lost two children to CF, and Joelle and Kayne Dunlop, whose nearly-3-year-old son Lincoln has CF.
Robertson addressed the group after his speech, and while they said it was good to hear the drug was on the Government’s radar, they said they wouldn't get their hopes up until the drug was actually funded.
“It’s good to know that he knows what it is and seems to understand,” Butler said.
Hamish Mountfort, who has the degenerative condition cystic fibrosis, is unlikely to live beyond his 30s without access to the drug Trikafta. He and his mum, Emma Brewerton, are urging the Government to fund the drug. (First published April 28, 2022)
Should Trikafta be funded, she would go from “from surviving to living”.
“It would completely change my life.”
Meanwhile, Housing Minister Megan Woods and Minister of Climate Change James Shaw were also in the region on Friday, visiting Ara Ake, the country's future energy centre, with MPs Glen Bennett and Adrian Rurawhe.
The centre, which was created using $27 million in Government funding announced in May 2019, was launched in July 2020 and is designed to identify opportunities and technology with change-making potential.
During their time at the centre, the MPs heard from several organisations working with Ara Ake.
These include tertiary provider Witt, which has become a testing bed for the technology of the future, Vertus Energy, which transforms waste into biogas using bacteria, and Emrod, a startup testing the beaming of wireless electricity at a site in Taranaki.
Also speaking were Vortex Power Systems, which is working to transform wasted heat into electricity using a vortex, Azure Wave Energy, which uses the power of waves to create electricity and salt-free water, as well as Our Energy which matches electricity producers with local consumers.