Ashley and Troy Watson have cystic fibrosis.
Ashley has access to Trikafta while Troy can't because he is "too well".
The brothers live together and Ashley has to watch Troy's health "slowly deteriorate" because he can't get the drug. Troy says it's a "kick in the guts" knowing he can't get it.
For the first time in his life, Troy Watson thought he was going to "lose the battle" against cystic fibrosis.
The 20-year-old from Whakatāne has just spent two-and-a-half weeks in Tauranga Hospital, struggling to walk and breathe due to the life-threatening, debilitating genetic condition he was born with.
"When Iwent into hospital, I lost my fighting attitude."
With the help of his friend group and rugby team, Watson got out of the hospital on Friday. He returned to work this week and is hoping to get back on the rugby field within the next two weeks.
But Watson has been struggling with "the mental side" of living with cystic fibrosis a lot more in recent months.
"It's just harder to get out of bed in the mornings."
However, after a funding boost for Pharmac was announced last week, Watson says there is a "glimpse of hope" for a "life-giving drug" - Trikafta - to be publicly funded.
Troy Watson is 'hopeful' Pharmac will bring the funding boost towards the cystic fibrosis community. Photo / Andrew Warner
Cystic fibrosis is a genetically inherited condition that produces thick and sticky mucus and mainly affects a person's lungs and digestive system. Specialists believe the average life expectancy of a person with cystic fibrosis is mid-to-late 30s.
Trikafta is not publicly funded in New Zealand. A petition seeking to change this has been presented to Parliament, claiming clinical trials have shown "significant improvement" in health outcomes for people with the condition.
Last Thursday, the Government announced in the Budget that Pharmac would be given an additional $191 million over the next two years to buy much-needed drugs for people with debilitating and life-threatening illnesses.
Pharmac's chief executive Sarah Fitt said it was the "biggest" increase since it formed almost 30 years ago and meant it could keep making more treatments available to New Zealanders.
An additional $71m would be available for 2022/2023 and $120m for 2023/2024.
Pharmac cannot yet share which specific medicines this will fund.
Some Bay of Plenty parents of cystic fibrosis sufferers are "disappointed" by the funding boost and believe they are "not even near" getting Trikafta publicly funded.
20-year-old Troy Watson has cystic fibrosis - a life-threatening, debilitating genetic condition. Photo / Andrew Warner
Watson said he was "definitely hopeful" and had his "fingers crossed" that the cystic fibrosis community would see the funding.
"But also [I] feel a bit helpless because once again, it's out of my hands. I can't do much about it."
Watson said his health had "rapidly declined" in the last two months and he had the last five weeks off work.
"It got to the point where even walking 50, 60 metres was a struggle.
"I couldn't take deep breaths - I was in a fair bit of pain just through breathing alone."
Watson spent two-and-a-half weeks in hospital, where he was on intravenous antibiotics to help fight a lung infection.
"It's just about trying to get your lungs to reopen up."
Watson said if he had access to publicly funded Trikafta, hospital admissions would become a thing of the past.
"It would just completely change the way you go about everyday life."
He said Trikafta would be a "miracle" and a "life-giving drug".
Rotorua mother Trish Daniels said she and the majority of the cystic fibrosis community were 'quite disappointed' with the Budget 2022 announcement for Pharmac. Photo / Andrew Warner
Some parents of cystic fibrosis sufferers were more cynical about the funding boost.
Rotorua mother Trish Daniels said she was "quite disappointed". Her 19-year-old son OJ Daniels has cystic fibrosis.
"They got around $200m - last year Pharmac had mentioned that they needed at least $300m to $400m just to cover the backlog [of drugs].
"It's not even half of what they needed.
"I don't know what that means for cystic fibrosis or Trikafta. But I just know that it doesn't feel good, it doesn't look good."
Before the announcement, Daniels was "reasonably hopeful" they might be "close" to getting Trikafta publicly funded.
But after the announcement, she thought they were "not even near it".
Tauranga father Glenn Ford agreed that the funding was "very disappointing" and was "very pessimistic" about Trikafta being funded. His 11-year-old son Charlie Ford has cystic fibrosis.
"I don't expect anything anymore - I've about got to the stage of nearly giving up. I've just sort of got to ride that horrible cystic fibrosis wave for the rest of our lives and try to battle it and look after our boy as best we can."
Glenn Ford pictured with his son Charlie. Photo / Andrew Warner
Cystic fibrosis New Zealand chief executive Lisa Burns said the announcement caused "major distress" for the cystic fibrosis community, which was "anxiously waiting" for Trikafta to be funded.
She said there would be a "direct benefit" to the health system if Trikafta was funded to ease existing costs relating to treatments for cystic fibrosis.
"We believe Pharmac needed $300m to fund the existing medicines on the list."
"$70m next year and $120m the following year won't deal with that, which means someone will miss out.
"We would like to see Pharmac exploring smarter solutions for use of this additional funding so that as many medications can be funded as possible, including Trikafta."
Pharmac's chief executive Sarah Fitt said it was working its way through its Options for Investment list, looking at what agreements it could now make with suppliers.
Fitt said Pharmac would like to fund Trikafta and acknowledged there was an "unmet health need" for another effective treatment for patients with cystic fibrosis.
"This is why we have placed Trikafta on our Options for Investment list."
Pharmac could not share the names of specific medicines it would like to fund with this budget uplift, other than the ones it had initiated consultation on last week. This included medicines for conditions including cancer, multiple sclerosis, hormone replacement and HIV.
"But they are just the beginning. We'll be working hard over the next 12 to 24 months to secure as many deals for treatments on our Options for Investment list as we can."
Fitt said there were 122 applications for 81 unique treatments on the Options for Investment list.
Pharmac could not provide the number of medicines it would like to fund and remove from the list, as it depended on negotiations with suppliers.
"We are grateful to those who share their stories and experiences with us, as these help us understand which medicines Kiwis think we should be funding."
