Tauranga mother fighting for son with cystic fibrosis to receive $500K-a-year drug

Lavinia Twose is fighting for her son Izaeah to receive the drug Trikafta, which costs almost $500,000 a year to fund. Photo / George Novak

"I have already lost a child to cystic fibrosis ... the thought of losing another one is unbearable."

Those are the words of Tauranga mother Lavinia Twose in a letter to Prime Minister Jacinda Ardern, desperately seeking help to fund a $500,000-a-year drug to keep her 19-year-old son Izaeah alive.

"He's been on oxygen 24 hours a day since he was 10 years old - he never complains," Twose said.

She says Izaeah now needs the new drug Trikafta from the United States, after other drugs available in New Zealand stopped working.

Twose asked the Prime Minister to consider funding Trikafta under "compassionate grounds" as "the heartache from writing this is too much to carry".

"Please ... save our family any more heartache that the loss of Izaeah will bring," she said.

Trikafta would clear his lungs of mucus, "which is a major part of [his] troubles," Twose said.

However, costs to import Trikafta into New Zealand come to US$311,503 for a year's worth of drugs.

That's around NZ$494,641, but Twose is keeping her chin up - "It's not much," she jokes.

If the Trikafta can't be funded, then Izaeah is "pretty much at the end of his treatment," Twose said.

"Izaeah's been talking with me about his funeral and what he wants to happen but he has also said he's scared and doesn't want to die," she said.

Twose previously lost her middle son Lucky to cystic fibrosis. He died on August 3, 2001 - the day before his third birthday. Lucky is survived by a twin who does not have cystic fibrosis.

"He (Lucky) had a lot of extra problems on top of the cystic fibrosis [and] failed to thrive," Twose said.

Lavinia's son Lucky died from complications with his cystic fibrosis the day before his third birthday. Photo / Supplied

Izaeah's aunt Faith McMah started a Givealittle page to fundraise for the Trikafta, which has so far received $1525 of a $470,000 goal in five weeks.

"He is the brightest, most cheerful, loving and gorgeous boy I know," she wrote on the page.

"With this drug [we will be] hopefully significantly improving his quality of life ... unfortunately, there is no cure for cystic fibrosis."

The condition is New Zealand's most common life-threatening genetic disorder, which affects around 550 people in New Zealand.

It affects breathing and digestion, leading to the lungs and digestive system becoming blocked with mucus. This can cause chronic lung infections, as well as problems with weight gain and malnutrition.

Izaeah now lives in Christchurch with his partner and her family, Twose said, near to his care team at Christchurch Hospital, where he must go every three months for around 10 days to take intravenous antibiotics.

Izaeah Twose has been on oxygen 24 hours a day for nine years. Photo / Supplied

Izaeah "never complains", even though it's a struggle for him to do most things, she said.

"He's been told a few times that he doesn't have long left ... and he's lived," Twose said.

"He doesn't often get negative."

"He pushes through," McMah said, but it's getting harder.

"He doesn't really think he deserves it ... he thinks it's a lot of money that a lot of other people can do things with."

Like any other 19-year-old, Izaeah's hobbies include games - "board games, cards, video games" - and his only scheduled outing in the week is to play Dungeons and Dragons.

Izaeah told the Bay of Plenty Times Weekend that with the Trikafta, he hopes to be able to have the energy to study. He doesn't know what yet, but it will probably be related to game development, he said.

At the moment, he doesn't schedule his week because he doesn't know how well he's going to be at any given time, he said.

The thing he most wants people to understand about his condition is that "it's really hard to explain the meaning of quality of life".

"When you're waking up, choking on phlegm and it's hard to catch your breath for the simplest things ... hopefully, Trikafta would help mitigate that. It's a bit scary."

"Hopefully I'll get out more, enjoy life while I can with the people that I love. My family's really far away, but I know they're always there for me."

Lizzie McKay, communications co-ordinator for Cystic Fibrosis NZ, said they were not aware of anyone in New Zealand with access to Trikafta, either through funding or compassionate grounds.

However, they have "regular contact" with a New Zealander in the UK who is now taking Trikafta and has seen "incredible, life-changing improvements".

Jane Wright, a senior communications advisor for Pharmac, said they had recently confirmed funding for another cystic fibrosis medicine, Kalydeco.

"We are, of course, aware that there are other new cystic fibrosis medicines funded overseas but New Zealand has not received funding applications for them," she said.