Rotorua cystic fibrosis sufferers celebrate funding of ‘miracle drug’ Trikafta

Natalie Wineti and her husband Laurence Wineti. Photo / Mead Norton

Tears, hugs, smiles and receiving “the best Christmas present ever”.

Cystic fibrosis sufferers around the Bay of Plenty are celebrating after Pharmac announced on Sunday funding of the “miracle drug” Trikafta is proposed to start on April 1.

Cystic fibrosis is an ultimately terminal condition that produces thick and sticky mucus and which mainly affects a person’s lungs and digestive system. Trikafta treats its underlying cause, but at $330,000 per year, the drug was out of reach for many families as it had not been publicly funded in New Zealand.

On Sunday, Pharmac said it had reached a provisional agreement with medicine supplier Vertex to fund Trikafta and was initiating a consultation on its funding for people aged six and above with cystic fibrosis who met certain eligibility criteria.

Natalie Wineti said Trikafta being funded meant she would no longer have to consider moving to Australia. Photo / Mead Norton

Rotorua mother Natalie Wineti, who has cystic fibrosis, said the announcement left her whānau “in tears”, as she never thought the day would come when Trikafta would be funded.

“My husband and I [...] were literally planning a future in Australia. We’ve been living in so much uncertainty,” the 38-year-old said.

Wineti, who was told in October to consider getting a lung transplant due to her condition, was confident she would no longer have to go through with it.

“I won’t have to uproot my whānau and make that move to Australia. It means that I can stay in the job that I love. It means that I’ll finally have a quality of life.

“That is the best Christmas present ever... I’ve got a smile from ear to ear.”

Wineti said her boss put on a “Trikafta celebratory morning tea” for her yesterday.

“It was so lovely. The whole team have been giving me hugs and kisses and congratulating me. It’s so amazing.”

Wineti said she and her whānau would go out for dinner tonight to celebrate and she would have “a glass of champagne”.

She thanked Pharmac for funding this “miracle drug”.

“It’s just going to make a world of difference.”

Cystic fibrosis sufferer Jessie McKay celebrates the news Trikafta will be funded in New Zealand.

Tauranga woman Jessie McKay, who also has cystic fibrosis, celebrated with her family with a cake and candles after the announcement.

The 21-year-old said her days were “long” made up of working full-time and doing treatments.

But she was confident that if she could start taking Trikafta, life would be “such a breeze”.

“The main thing that it was affecting was my goals. I couldn’t go and travel without having to take an extra whole suitcase of medication.

“I have so many plans that I can actually do. I want to travel and go places, and it’s just going to be so much easier now.”

McKay has just returned from America after doing a summer camp and is planning to go back for another season next year.

Cystic fibrosis sufferer Isaac Tait, who lives in Whakatāne, said he and his family were “elated”.

“I’m absolutely speechless - it’s life-changing and life-continuing. No more burden on people,” the 41-year-old said.

Tait’s parents had been paying $396,000 per year for Trikafta.

Tait said he was having a family dinner on Sunday night when someone sent him the link to the story about Trikafta being funded.

“It’s quite funny because someone here in Whakatāne won $5m on Saturday, and I feel like I’ve won way more than him.

“Kids born with cystic fibrosis nowadays have the potential just to take one or two pills and then just carry on with their life. I was horrifically bullied at school because I was a sick kid and always in hospital, and so many people aren’t going to have to go through that now, and it’s just amazing.”

Cystic fibrosis sufferer Troy Watson, who also lives in Whakatāne, said it was “the best thing I’ve heard this year”.

Watson, who has been taking Trikafta for about six weeks as part of a two-and-a-half-year trial with Vertex, said it had been “completely life-changing”.

“I’m never in pain, I’m always energetic. I just feel good constantly.”

He said it was a “relief” to know that once the trial ended, he could continue taking Trikafta.

Watson, who works full-time at a butchery, is saving and planning to buy a house.

OJ Daniels and his mother Trish Daniels. Photo / Andrew Warner

Cystic fibrosis sufferer OJ Daniels has been on Trikafta since June after being approved for free access through a managed programme run by the drug’s manufacturer and supplier Vertex.

“Everything’s just changed now. I can actually experience life now.”

OJ is planning to enrol at university next year to study IT and wants to eventually get a job in the industry.

His mother, Trish Daniels, said Pharmac’s announcement was “the most ideal Christmas gift in a lifetime”.

“When he was put onto the access programme, that feeling was extraordinary... that was the most miraculous thing that could happen in his lifetime.”

But the announcement on Sunday left her “ecstatic”.

“Neither of us have really slept - we’ve cried a thousand times over. We have no more tears left in us.

“There are no words that can describe the feeling that we had and the emotions that were flooding through us when they announced that they were going to fund Trikafta. It was just incredible.”

Nikki Reynolds-Wilson has cystic fibrosis, but because she has had a lung transplant, she cannot take Trikafta.

“It would’ve been great to be able to take it because it would help with my digestive system, but it reacts with our anti-rejection medication,” she said.

Reynolds-Wilson and her sister Kristie Purton were known as Tauranga’s ‘Cystic Sisters’, both having been born with cystic fibrosis. But Kristie died in March 2019 after undergoing a lung transplant when her body rejected the lungs.

Despite not being eligible for Trikafta, Reynolds-Wilson said it was nice to know kids with cystic fibrosis could now “live a lot longer and do a lot more”.

In a press release, Vertex Pharmaceuticals said more than 360 New Zealanders with cystic fibrosis would have funded access to Trikafta under the agreement.

Vertex Australia and New Zealand senior country manager Sabrina Barbic said it was a “significant milestone” in ensuring they received “timely and sustainable” access to Trikafta.

“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.”

On finalisation of the process, New Zealand will join more than 35 other countries where Trikafta is broadly reimbursed for eligible cystic fibrosis patients, including Australia, the United Kingdom and Canada.