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Stanmore Bay personal trainer Josh Chase is continuing his campaign to raise funds for and build awareness of a drug that can dramatically improve the lives of cystic fibrosis (CF) sufferers.
Chase was born with CF, which is a progressive, genetic condition that clogs the lungs and digestive system with thick mucus, causing chronic symptoms including breathlessness, coughing, chest infections and stomach pain.
Although there is no cure for CF at present, the drug Trikafta can clear much of the mucus and dramatically improve sufferers’ lives – something that Chase himself is experiencing, having recently started on a two-year trial.
“I noticed changes in myself within the first few hours of taking it,” he said. “Calling it a miracle drug is an understatement.
“I took my first tablet in the morning and by 12, I didn’t need an inhaler, I stopped coughing and was able to take a deep breath, and I haven’t coughed since I started. I’m also sleeping better.”
Taking Trikafta also means Chase has been able to get a full-time job for the first time in five years, becoming the manager of Jetts Gym in Browns Bay.
“I can lift heavier weights than I ever have, it’s amazing,” he said. “I’m not gasping for air, and not having to take time off work.”
However, other people with CF are still unlikely to be able to enjoy such benefits, as Pharmac recently decided against funding Trikafta, which costs $330,000 per person, per year.
This was a huge blow, according to CF support organisation Cystic Fibrosis NZ (CFNZ). Chief executive Lisa Burns said after months of apparent progress, she was “utterly thrown” when the decision was announced in late September.
“It defies logic that a medicine with such positive impact doesn’t make it up the ranking list for funding. The current average (CF) life-expectancy in New Zealand is 31, yet Trikafta could give Kiwis with CF an additional 27 years, and quality of life. It doesn’t make any sense.”
Chase remains hopeful that by the time his two-year trial on the drug comes to an end, Pharmac will realise how much of an impact the drug has on people’s lives and change its mind.
In a bid to raise funds for all CFNZ’s efforts, Chase is currently running a raffle at Jetts, with prizes that include sports gear, NZ Muscle supplements and vouchers for groceries, coffee and a tattoo. Tickets remain on sale until November 30.
Raffle tickets and donations: givealittle.co.nz/fundraiser/cf-fundraiser-jbb or email Josh Chase on 021 0259 0259.
Info: www.cfnz.org.nz
