6 days to go!
28 July 2024While I’ve chosen to mostly kept Roman’s health journey private I wanted to share more about Cystic Fibrosis.
Currently trikafta is funded in NZ for those over the age of 6 (who meet the eligibility criteria). It is the first medicine that can treat the cause of CF but it does not cure CF. The full cost of ONE year on this drug is approximately $330,000 NZD.
While this medication is funded as of April 2023, there is a lot more additional costs for patients and families that cystic fibrosis imposes. For example: lost wages for those with Cystic Fibrosis and their care givers and lost opportunities to work. Costs such as the hours spent doing daily treatments, going to and from hospital appointments, frequent hospitalisations, and a parent or caregiver having to give up work to care for a sick family member. Extra cost to grocery bills for a higher fat diet and additional nappies/wipes due to pancreatic insufficiency.
If you can! Spare your next morning coffee and donate those few bucks. Appreciate all the support so far can’t wait to cross the finish line for Ro 💗