"A kick in the guts."
That's what Troy Watson, 20, says it has been like to watch his brother Ashley, 28, take a "miracle" drug for cystic fibrosis - a condition they were both born with that threatens to dramatically shorten their lives.
But he's not sick enough.
After starting the $330,000-a-year drug six months ago, Ashley - once the sicker of the Whakatāne pair, and barely able to walk - is now planning to return to work and potentially move overseas.
Troy was happy to see his brother's health improve, even as his own slowly deteriorated.
Ashley gets Trikafta free through a compassionate managed access programme funded by the drug's manufacturer and supplier. He said it had been a "miracle".
Troy, however, was "too well" to be eligible. Troy said he asked his specialist about it but was told there was "no chance" for someone like him without government funding.
Cystic fibrosis is an ultimately terminal condition that affects about 540 people in New Zealand. Trikafta treats its underlying cause but is not publicly funded in New Zealand.
Specialists believe the average life expectancy of a person with cystic fibrosis is mid- to late-30s.
A petition calling for public funding of Trikafta was presented to Parliament last week, saying clinical trials had shown "significant improvement" in health outcomes for people with the condition.
Ashley said Trikafta should be funded because people should not have to "get as sick as I was" before getting it.
"I don't want to see the next generation coming through having to go through what I went through."
Ashley finished culinary school in 2013 and worked internationally - Australia, Dubai, Amsterdam, New York - before his deteriorating health forced him home in 2018.
He moved in with his parents, who became his full-time caregivers. He could not walk by himself and was constantly in and out of hospital.
Ashley said he was on oxygen 24/7 and "struggled to walk from my bedroom to the bathroom".
He applied for Trikafta supplier Vertex's fully-funded access programme through his specialist doctor about eight months ago.
"You have to be within a certain critical range and then they apply to Vertex.
"I was lucky enough to get it."
The application process took about two months. Vertex monitors his health and he does tests every three months.
Trikafta had made Ashley's life "completely different".
"I'm no longer on oxygen or any of my other medication. I'm back exercising normally, I've been surfing. Life's pretty much back to normal now - as close as it could be."
He enjoyed hanging out with loved ones again and going to the beach "without being stuck in a wheelchair".
Returning overseas had become an option.
Troy's health, however, had not worsened enough to put him in the eligibility range.
"It's quite a hard one to watch when I'm taking it and watching him slowly deteriorate."
In Ashley's view, Pharmac needed a budget increase so it could fund the medication.
Troy said living with cystic fibrosis was a physical and mental challenge.
"You just always feel tired. You wake up and your lungs are tired and sore ... it's just a mental battle just to get up."
He worked full-time as a butcher but sometimes switches to part-time depending on his health.
He struggled to gain weight or digest food properly and found winter "harsh" on his body, lacking insulation.
"I probably eat twice as much as your normal person but my body only takes in half the calories.
"And because my lungs are working twice as hard as your normal person, I'm burning twice as many calories."
Troy said he spent about three hours each day taking medications and doing exercises to help his lungs.
He believed Trikafta would allow him to "almost turn around and live a normal life".
The brothers lived together and Troy said it had been "great" to see Ashley's health improve - but it was also a "kick in the guts" knowing he could not get it.
"If it was publicly funded, it would just save so many lives and open up opportunities for everyone with cystic fibrosis."
Without it, his life looked "pretty short" and he did not have "a bright future" ahead.
Facing the reality of likely dying young was "part of the mental battle".
"It's always on the back of the mind because you're always trying to accomplish and achieve so much, but at the same time you're always so tired and run down."
Troy hoped to travel and "get out and about and see the world".
He said funding was "a real possibility until [Pharmac] changed how urgent it was".
"It was a high-urgency drug but now it's gone down to a medium."
Cystic Fibrosis New Zealand chief executive Lisa Burns said Trikafta needed to be funded now. Without urgent funding, some with the condition would die, she said.
"This is completely avoidable."
The group urged Pharmac to "act now" to negotiate a fair and reasonable price with Trikafta manufacturer Vertex, and for the Government to give Pharmac the necessary budget.
"With Trikafta funded in 30 countries around the world and Australia now confirming access from April 1, surely New Zealand can too," Burns said.
In February, Pharmac announced its clinical advisory committee had recommended funding Trikafta with "medium priority" for people over 12.
Pharmac's director of operations Lisa Williams said it was continuing to talk to Vertex about the treatment and price.
"While Pharmac can negotiate some of the best prices for medicines in the world, when faced with a medicine which has such a long patent life, such negotiations can be challenging."
Williams said Pharmac had limited influence over the price the manufacturer of a patented drug set, and operated "within a fixed budget set by the Government".
"There will always be more medicines we want to fund than we can afford. This means we have to make difficult choices about what medicines are funded."
Williams thanked all those who shared their stories because hearing how medicines impacted New Zealanders was "really important" in helping Pharmac understand which medicines it should be funding.
The Ministry of Health and Health Minister Andrew Little's office were also contacted for comment.
• Cystic fibrosis is a genetic disorder that causes the body to produce thick, sticky mucus that results in serious clinical consequences for multiple organs such as the lungs, pancreas, liver, intestines and reproductive system.
• Daily treatment is three to four hours per day and increases with age and severity of the condition.
• Current treatment in New Zealand focuses on the symptoms of cystic fibrosis, with the aim of slowing the progression of the condition and enhancing quality of life.
• People with cystic fibrosis endure a lifelong, demanding and time-consuming daily regime of lung clearance and medication, together with regular medical check-ups, increasingly frequent hospitalisations and in some cases, lung transplants.
• Specialists believe the average life expectancy of a person with cystic fibrosis is mid- to late-30s.
Source: Cystic Fibrosis New Zealand
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