As part of world Rare Disease Day on 28 February, Cystic Fibrosis New Zealand has written to all 120 MPs in New Zealand to highlight some of the issues facing the CF community.
One of the biggest obstacles is that the condition cystic fibrosis falls into a pharmaceutical funding gap because the incidence of the main genetic type of cystic fibrosis in NZ is too common to qualify under Pharmac’s rare medicines funding criteria, nor do CF medicines benefit a large number of the general population.
CFNZ has also highlighted the on-going lack of funding for the medicine, Kalydeco, which is routinely available overseas – as are TOBI Podhalers which are superfast nebulisers for taking the antibiotic, tobramycin, which would make a huge improvement to the treatment burden of CF.
