Cystic fibrosis battlers DON’T GIVE UP ON US!
For more than 500 cystic fibrosis (CF) sufferers in New Zealand, it’s somewhat of a “torture” knowing there are breakthrough medicines available that would change their lives but aren’t subsidised here.
One such drug, Trikafta, has been widely heralded for turning CF from a life-threatening condition – predominantly affecting the lungs and digestive system – to a manageable one. Trikafta has approval and is funded in 30 other countries, including Australia, the UK and Canada.
The estimated annual cost of Trikafta in New Zealand is $330,000, excluding GST. Pharmac board chair Steve Maharey has acknowledged the agency needs to work out “how we fund small groups of patients who have very high cost needs”.
The Weekly speaks to three families affected by CF, two of whom see living abroad as the only option for their future. They hope that by sharing their stories, people understand there is a need for urgent change to the way medicines are assessed and funded in Aotearoa.
