Prime Minister Jacinda Ardern says she's listening to calls for life-changing drugs to be made more accessible but says she has no say in Pharmac's decision process - and she doesn't want any either.
Every morning 13-year-old Kees Williams from Palmerston North goes through the same gruelling routine, using a nebuliser to clear his mucus-filled lungs.
He's one of hundreds of New Zealand children who has cystic fibrosis, the deadly inherited disorder which cuts life expectancy to just 37.
What makes this situation even worse is that there is a drug that could help Kase, but it costs $400,000 a year - something his family can't afford.
Trikafta has the potential to turn cystic fibrosis from a life-threatening disorder, to a manageable condition. But Pharmac doesn't fund it and it’s not even on the list of drugs it may fund in the future.
Kees' mother Janine Williams says "it's hard knowing there is something that could prolong the life of our child but we can't access it".
Despite the increase in Pharmac funding announced in last week's Budget, it seems unlikely Trikafta will now be funded.
Williams says she could never have imagined her whanau to be in such a desperate situation and she wants politicians to know that her son is worth it.
The Hui spoke to the Prime Minister about Kees' plight, and she said his pleas do not fall on deaf ears.
"Not at all. I've consistently heard calls for, at different times, different drugs, for the purposes of different treatment," Ardern said. "What we've got to do is make sure we are continuing to fund Pharmac, but ultimately they are the ones that are making those decisions and that's really critical for us - politicians should never make the calls around what drugs are and aren't funded but we have over time increased Pharmac's budget by 25 percent. It's over $1 billion, but they need to make those critical decisions."
In the Budget last Thursday, the Government announced it would boost Pharmac's budget by $200 million, however, the figure fell well short of expectations.
Newshub recently revealed the agency Pharmac would need $400 million a year to clear the backlog of drugs on its wish list.
The Hui asked Ardern why some other countries, including Australia, allocate around 15 percent of their health budget for drug funding, but New Zealand spends just 5 percent.
"We have a really unique model," she said. "That's one of the reasons why it wouldn't be straightforward to compare the way New Zealand operates to others because we basically have a bulk buying model.
"One thing it doesn't necessarily or has been seen to necessarily serve, is small groups of the population who have rare disorders or particular health needs so we are undertaking a review of the model to check whether there are things we need to change to best serve those communities."
Ardern admitted she finds it "heartbreaking" receiving and hearing stories from ill Kiwi kids, but she never wants to be the one making the decisions around drug funding.
"I'm not the expert and we should never politicise pharmaceutical funding in this country, I would hate to see that."
One option Kees and his family are considering is relocating to Australia to get better drug access.
Ardern told The Hui she doesn't want people to leave "under any circumstances", and the Government is reviewing the process of Pharmac to see if there are any ways to better serve Kiwis with less common drug needs.
"We want to make sure that we have a health system which is meeting people's needs. The one thing we do know is there are people who are in circumstances where they are in a smaller group often with drugs that may be seen as for those high needs groups at higher costs - are we serving those groups well?
"That's for us to check the settings of, but the decisions of what to fund is still up to Pharmac."
The Hui is made with support from Te Māngai Pāho and NZ On Air.
