Cystic fibrosis: Rotorua mother gives Pharmac a year to fund Trikafta before moving overseas

A desperate Rotorua mother has been told by her doctor to consider getting a lung transplant after being hospitalised for the third time this year.

Natalie Wineti has cystic fibrosis — a genetically inherited and terminal condition — but the $330,000-a-year "miracle drug" to treat it, Trikafta, is not funded in New Zealand.

Without that three-pill-a-day option, her days are bookended by "exhausting" 90-minute treatment sessions.

Trikafta is funded in Australia, where Wineti and her husband are considering moving if nothing changes within 12 months.

Wineti was discharged from Rotorua Hospital on Tuesday after spending five days "stuck" getting treatment.

She was told by her doctor it was worth considering a lung transplant because the organ's function was declining, which she called "a bit of a shock".

Cystic fibrosis sufferer Natalie Wineti has just spent five days in Rotorua Hospital. Photo / Andrew Warner

But for the 38-year-old, the solution was simple and wouldn't require the need for a transplant — publically funding the $330,000-a-year drug.

"I can only imagine what my future could look like on Trikafta," she said.

"My life is literally in Pharmac's hands and it's got the power to end the pain and suffering."

Cystic fibrosis produces thick and sticky mucus and mainly affects a person's lungs and digestive system. It affects about 540 people in New Zealand.

Pharmac has Trikafta on its options for investments list and had been in discussions with its supplier Vertex as part of Pharmac's work towards publicly funding the drug.

Several Bay of Plenty families have spoken out about the need for Trikafta to be publicly funded including Whakatāne man Isaac Tait, whose parents are paying $396,000 a year for the drug, and Tauranga father Glenn Ford who is considering moving to where it's funded overseas.

Wineti is married with a 10-year-old son and two stepchildren.

She is a full-time social worker, covering the Bay of Plenty, Taupō, Waikato, Hamilton and Te Aroha.

"I'm up at about 5am every day to start my treatments before I head off to work."

Wineti takes more than 40 tablets per day and uses inhalers and nebulisers.

"It's really time-consuming and exhausting but necessary for the sake of my health.

"After my treatments are done, I get to work, 9am to 5pm, and then return home in the evening to do those treatments again for an hour and a half."

Natalie Wineti said she has been admitted to hospital three times this year due to her condition. Photo / Andrew Warner

Wineti said life with cystic fibrosis was "exhausting" as she struggled to breathe, talk and walk.

"I spend hours and hours awake at night just coughing so hard to try to clear the secretions that are built up in my lungs.

"By the time I've cleared enough to be able to fall asleep, it's time to get up for work. It's never-ending."

Wineti was admitted to hospital on October 6 and her doctor said it was time to start thinking about a lung transplant.

"I'm thinking if there's Trikafta, why wouldn't we go that way? I think transplants should be the last resort."

Wineti said deciding to get a lung transplant would create an uncertain future and mean having to consider giving up the job she loved.

"There is a miracle drug out there that can help people with cystic fibrosis maintain a quality of life - it's so life-changing.

"It would make a world of difference for everybody with cystic fibrosis because we want to live and grow not just survive. Because that's all we're doing, we're surviving."

She had considered moving to Australia as Trikafta is publicly funded there.

"At the moment, [my husband] and I are giving it a year to see what happens with Pharmac and if nothing progresses, we're going to have to make the move because I can't keep living like this.

"It's not fair that we have to consider a move ... my role as a social worker, I'm out there helping people who are in crisis or in other words saving people who are in crisis. Who's saving me?"

The Australian health system comprises of publically and privately funded health care, with the public system including Medicare, public hospitals and the Pharmaceutical Benefits Scheme (PBS).

Generally, in order to be entitled to Medicare someone must be an Australian citizen or permanent resident, however, Kiwis living permanently in Australia are eligible for it if they can prove they have entered the country long-term or permanently, according to the Ministry of Foreign Affairs and Trade.

New Zealand residents visiting Australia are also entitled to services as public patients in a public hospital for medically necessary treatment and prescription medicines subsidised under the PBS, according to a 2016 New Zealanders in Australia guide on the Parliament of Australia website. Trikafta is on the PBS.

Being in hospital affected her mental health "big time".

"It's hard to be stuck in here. I feel really alone. I feel isolated, but I know I'm in the best place when I am really unwell."

But if Trikafta was funded, she could "live a normal life and do the things I want to do".

In a statement, Pharmac chief executive Sarah Fitt said it understood the substantial health need of living with cystic fibrosis and the health benefits Trikafta offered.

"Trikafta remains a medicine Pharmac would like to fund, subject to available budget.

"We will continue to work closely with Vertex staff to try to find a way forward."

Fitt said Trikafta was on its on our options for investment list, however, the actual ranking on the list was confidential for commercial reasons. This ensured it could negotiate the best prices so more New Zealanders could access the treatments they need.