Rare Disorders NZ is extremely disappointed with the announcement yesterday of a pre-budget boost to PHARMAC’s funding by $160 million over four years. In real terms this amount is a drop in the ocean of unmet need for adequate medicine funding in New Zealand, and will not help people living with a rare disorder. The $10 million increase for the next financial year will not even be enough to enable the status quo, considering the extra costs due to the current crisis.

We ask for transparency of the investment that would be required for PHARMAC to truly ensure equitable access of modern medicines in New Zealand in alignment with other developed countries, and we believe New Zealanders deserve a clear message about medicine funding. Is the message ‘more medicines for more people’ and securing deals for medicines for ALL New Zealanders, or simply maintaining the supply of current medicines we are having to now pay higher costs for? Sadly, the evidence points to the latter and over the next four years, people with rare disorders will continue to lose out when it comes to medicine funding.

The Covid-19 pandemic has brought the fundamental importance of health to the fore. As a compassionate society, it is shocking that there are over 100 medicines on a waiting list, despite going through the robust evidence-based assessment channels to gain approval to be funded. They languish on a long list which has no transparency of when, why or if any will be provided to the desperate patients who need them. The average wait for funded access is four years, and with rare disorders medications, sadly, this can be over 10 years. Imagine waiting to get access to a Covid-19 vaccine for that length of time?

Seventeen of the medications on the waiting list have high priority status for funding. Of these medicines, there are three for rare disorders; one, for a rare condition called Gaucher’s Disease, has been languishing on PHARMAC’s high priority list for almost nine years.

Ignoring these disturbing facts means we will stagnate as a country when it comes to access to life-changing drugs. This will impact on wellbeing and on the wider economy as the health and social costs are significant. Chronic conditions unable to be effectively treated place huge costs on the healthcare system, and often result in an inability to work, study, fulfil social obligations and participate in the community. It is a short-sighted vision with dire consequences for many New Zealanders.

For true equity and fairness, a review of PHARMAC is needed along with adequate funding at a level that aligns with other developed countries.

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