By ROBYN BRISTOW
Chisholm Lunn wants to see his family grow up.
“You cannot put a value on that,” he says.
The humble North Canterbury man, who has cystic fibrosis, keeps himself as fit and healthy as possible in his bid to live a happy and full life alongside his family.
But to make his future more certain, the 47-year-old needs access to Trikafta, a life-saving medication.
The serious and ultimately terminal genetic condition affects about 540 Kiwis. It causes the body to produce thick, sticky mucus which damages the lungs, digestive system, liver and other parts of the body.
Sufferers endure a demanding and time-consuming daily regime of lung clearance and often medication, together with regular medical check-ups. Over time, there are increasingly frequent hospitalisations.
For some, a lung transplant may be the only remaining option.
Chisholm was diagnosed with cystic fibrosis when he was 4. Since the age of about 7, when he read that he might only live to 12, he has been aware that his life expectancy was not great.
Chisholm says he has always hoped, perhaps naively, that when a life-changing treatment became available to improve his quality of life and increase his life expectancy, the health system would be there.
But without changes to the Pharmac funding system, he says he may never get access to the drug. He sees no way of being able to foot the bill himself, with the drug costing more than $400,000 a year.
Chisholm has 54 to 56 percent lung function at present, thanks to a strict regime of keeping fit and doing everything he can to stay healthy.
“I have worked hard all my life,” says Chisholm, who has never required a sickness benefit. This is in spite of being told he would probably not live long into adulthood, be able to do certain jobs, or have children.
“I challenged that, and just went and did it.”
Chisholm has, at various times in his life, turned his hand to farming in Central Otago, farm labouring, and working in mines in Western Australia to pay off his student loan.
He has lived in Britain where he had a fencing and landscaping business, and worked in farming and tourism.
He married Alison in 2002 and returned to New Zealand in 2007. He now works in the eterinary industry.
Throughout Chisholm’s life there have been stints in hospital, and medication to take. He has always been on a regimen of cystic fibrosis-related medications, but by keeping fit and being strict about his medications he has not had any hospital visits for some time.
However, every day there is the constant reminder of his illness as he struggles to breathe. He constantly worries that tomorrow is the day he will be back in hospital, or worse.
‘‘Imagine breathing through a straw.
Eventually you’d start to panic. That is what it is like all the time,’’ he says.
Chisholm says the Covid-19 pandemic has made it more difficult for him, as he constantly coughs to clear the mucus build-up.
‘‘You see people stepping away from you,’’ he says.
Chisholm feels that any day he can wake up and take a breath, is a good day.
All his worries about his future would be taken away if he could gain access to Trikafta and remain a productive member of society.
His frustrations grow when he sees hundreds of millions of dollars being spent on non-productive luxuries, while Pharmac remains ‘‘totally underfunded’’ by successive governments.
■ As a charity, Cystic Fibrosis NZ relies on the generosity of the public to help fund its services for people with cystic fibrosis. Its annual appeal runs throughout May, and it encourages everyone, including businesses, schools, and organisations, to support this year’s campaign however they can. Donations can be made online at cfnz.org.nz/donate, or by texting FUTURE to 4462 to make an instant $3 donation.