Nick Laing is back to running and the gym since taking Trikafta for his cystic fibrosis. He hopes to get a job in graphic design or photography soon too. Photo / Paul Taylor
Nick Laing is back to running and the gym since taking Trikafta for his cystic fibrosis. He hopes to get a job in graphic design or photography soon too. Photo / Paul Taylor
Nick Laing used to dread getting out of bed every morning, but now he can run towards his passions at full speed.
The 38-year-old Hawke’s Bay man says he “shed a bit of emotion” when he heard that other people with cystic fibrosis like himself could soon access the “miracledrug” that changed his life with Pharmac’s announcement of its provisional agreement to fund Trikafta earlier this month.
“It’s a massive relief.”
He started his treatment on Trikafta in October through private funding.
He said he had five admissions to the hospital this year, typically about two weeks in length, and he was in the hospital for a month in July after a blood test detected glandular fever.
“There was talk of me going up to Auckland for a double lung transplant because my lungs were starting to deteriorate.”
He said he had applied to have treatment with Trikafta funded on compassionate grounds, but he had been rejected.
He said a friend who he had met through a shared interest in The Backstreet Boys offered to pay for him to be treated with Trikafta for 12-15 months, which he said costs about $330,000 annually.
“I initially said no, that is too much money but she said ‘no is not an option’.”
He said after some time making the arrangements with the hospital he was able to begin treatment and saw immediate results.
“Within hours of me taking the first dose, I coughed up probably half a litre of mucus,” Laing said.
Laing enjoys drumming, running, swimming, tennis, cricket and going to the gym, all activities he can now do with no limitations. Photo / Paul Taylor
“My shortness of breath disappeared and I have managed to put on close to 10kg.”
He said he likes drumming, running, swimming, tennis and cricket and he is now getting back into training at the FlaXrock Gym.
“This is my third week of full-on training five times a week. Before, even just talking to you I wouldn’t be able to talk without running out of breath or coughing throughout,” Laing said.
“I used to wake up every morning and dread getting up because once I got up all the mucus and stuff in my chest would move and I would just cough for the first two hours and then be too exhausted to do anything, normal stuff like doing laundry or mowing the lawns.”
He hasn’t been able to work because of his CF, but on Trikafta he now hopes to get some graphic design work designing logos or work in photography.
Pharmac’s director of operations Lisa Williams announced on December 4 that Pharmac was initiating consultation on the funding of Trikafta for people aged 6 years and above with cystic fibrosis who meet certain eligibility criteria.
Pharmac estimates Trikafta could give people with CF up to 27 more years at full health when compared with supportive care.
The consultation is available on the Pharmac website for anyone wanting to have their say.
Funding for Trikafta is proposed to start on April 1, 2023.
