Medicines access for cancer must also be Fair for Rare
30 July 2019
Rare Disorders NZ welcomes the National Party’s recent announcement on cancer care but calls on both the opposition and the coalition government to widen their medicines access proposals beyond cancer to include provision for people living with rare disorders.
“Too often New Zealanders with a serious uncommon health condition fall between the cracks and don’t get the health care they deserve,” says Chief Executive of Rare Disorders NZ Lisa Foster.
“For truly integrated universal healthcare in New Zealand we must have a cohesive approach to health which is based on need, not just on a specific condition or diagnosis.”
Rare Disorders NZ campaigns on behalf of the 400,000 New Zealanders living with a rare disorder, 50% of whom are children. New Zealand lags far behind other OECD countries like Australia where the percentage of the healthcare budget spent on medicines is at least double our 5%.
“We’ve been working alongside Malcolm Mulholland and Patient Voice Aotearoa to ensure that people living with rare disorders are included in any medicines access proposals,” says Lisa.
Two rare disorder groups will be speaking to the Health Select Committee next week to call for funding for life-changing medicines that are already available to patients living in other countries. Spinal muscular atrophy spokesperson Fiona Tolich will be calling for funding for Spinraza, a medicine that has been shown to stop the progression of the disease. The NZ Pompe Disease Network will call for access to Myozyme, the only medicine available for Pompe disease, a rare condition that causes muscle weakness and respiratory issues. Myozyme is funded for all those with Pompe disease in over 75 countries - New Zealand, Iceland and Turkey are the only countries in the OECD that don’t fund it.
Rare disorders are not just health and disability issues but affect mental health, education, housing, employment and overall wellbeing.
Rare Disorders NZ (formerly NZORD) is a connector hub and collective voice for patients and families affected by rare disorders. Rare diseases affect about 8% of New Zealanders.
There is no acknowledged definition of rare disease in NZ, however RDNZ follows the European Union policy which defines a disorder as rare when it affects less than 1 in 2000. More than 7,000 rare disorders collectively affect around 400,000 New Zealanders. Of this number, 50% are children.
As the umbrella organisation for all rare disorders in New Zealand, RDNZ works with more than 130 support groups, some of which are too small and under-resourced to take a public stance, to promote better health care and wellbeing for all people living with a rare disease.