Edward Lee is counting down the days until 1 April 2023. This is the date that Trikafta, the Cystic Fibrosis (CF) ‘miracle drug’, is set to be made available in New Zealand. The road to get to this point has been a long one and Edward has been instrumental in making this milestone possible.
Edward has CF, a protein folding disorder that causes thick and sticky mucus to build up in the lungs, making it hard to breathe and increasing the likelihood of infections. Each lung infection causes further lung damage, resulting in poor lung function. Edward’s lung function was 28% at its lowest, making him tired and breathless. CF took a huge toll on Edward’s quality of life, he spent a lot of time in hospital and was constantly on antibiotics, which damaged his liver and renal function.
The predominant treatment for CF in New Zealand is inhaling saltwater twice a day to remove mucus from the lungs. However, after hearing about Trikafta, which is a breakthrough treatment available in most E.U. countries, the UK and the US, Edward knew it was what he needed to get healthy and live a normal life. “Trikafta isn’t currently funded in New Zealand, but I was in a fortunate and privileged position to be able to go to the US and pay for a Trikafta prescription,” Edward explains. “It really is a miracle drug. Within 48 hours, it had removed the mucus that had been clogging up my lungs and preventing me from breathing properly for my whole life. Within four days my cough had gone and I began to feel like I didn’t have CF at all. I returned to the hospital after a couple of months of taking Trikafta and the radiologist thought something was wrong with the x-ray because she couldn’t believe the improvement in my lungs!”
During one of his many stays in hospital, before taking Trikafta, Edward decided to use social media to find a CF community: “We’d send messages of encouragement to each other and the occasional parcel to wish people well and help them to keep battling their CF,” Edward explains. Once he’d experienced how transformative Trikafta had been for himself, Edward knew he wanted everyone with CF in New Zealand to access Trikafta.
With the support of the CF community and armed with the x-ray images, which proved just how well Trikafta works, Edward began lobbying for Trikafta to be funded in New Zealand. “We did TV interviews to inform people about CF and how incredible this drug is. We went to all the major political parties to drum up support. We spoke to the health minister and Pharmac to convince them to fund Trikafta. We helped to convince the minister of finance to approve the cost of funding it and eventually, on December 4th, we got what we wanted and it was confirmed that Trikafta was set to be approved in New Zealand,” Edward explains.
Speaking on the difference that Trikafta will make to the CF community, Edward says: “Around 27 years will be added to our life span, which is amazing as lots of people with CF don’t even make it to 30. People will be able to plan for retirement, instead of just assuming they won’t live to see it.”
Trikafta will be available for those aged six and above: “My hope is that these young children with CF will be able to take Trikafta before any permanent lung damage occurs and they can live most of their lives without feeling like they have a serious illness”.
Edward’s life has been transformed since he began taking Trikafta: “Since being well, my lung function has increased significantly. I’ve been able to hike the Routeburn Track with my wife – an 8-hour hike which I wouldn’t have been able to do before Trikafta. My wife’s mental health and my own has greatly improved; we’re no longer worried that I’m going to die really soon. Previously it felt like I was living in a dark cloud, but now we can plan for our future.”
