Media Statement from Rare Disorders NZ

Rare Disorders NZ is extremely frustrated to hear the Minister of Health this week dismiss the call to increase funding for Pharmac to fund the medicines on its Options for Investment list due to budget constraints. His comments were in response to a 43,000-strong petition calling for the Government to fund the life-changing drug Trikafta for people living with the rare condition cystic fibrosis.

Despite Minister Little’s assurance that Pharmac undertakes proper cost-benefit analyses, Rare Disorders NZ believes that if all factors were brought into consideration, funding these life-changing medicines would likely be found to be the most cost-effective option for the Government.

Not funding these medicines results in a higher utilisation of other health services for these patients, such as more frequent specialist and GP visits, MRIs, surgeries and stays in hospital, as well as time out of the workforce and benefit dependency.

Furthermore, it is deeply concerning to hear the Minister make misleading comments regarding the increase in Pharmac’s budget by 25% under this Government. This is not new investment, but money transferred from DHBs to fund existing hospital medicines, and will have no impact on the medicines waiting list.

New Zealand is at the bottom of the OECD when it comes to medicine access and we as a population deserve transparency to understand why. Clearly the system is not working, and a paradigm shift is needed to improve the way decisions are made about resource allocation.

Every New Zealander deserves the right to the highest attainable standard of health, which must be enjoyed without discrimination, and deserve to feel confident that their government is making costeffective decisions to ensure resources are suitably allocated.