People with rare health conditions need equitable treatment

2 September 2019

Rare Disorders NZ (RDNZ) applauds the Government’s recent announcement on cancer care but is urging more action to support all New Zealanders with chronic health conditions.

“People with serious diseases that are not a cancer deserve to have equitable care,” says RDNZ Chief Executive Lisa Foster.

“We urge the government to ensure that New Zealanders living with a rare disorder are not left out.”

The Government has announced it will establish a national Cancer Control Agency by December this year and will give PHARMAC an extra $60 million over two years. This money hasn’t been ring-fenced for cancer and some of the funding will go towards other illnesses.

“This is a step in the right direction, but more action is needed to ensure that every New Zealander gets world-class health care. No family should have to move to Australia to get medicines available all over the world,” says Lisa.

In May this year the Minister of Health David Clark sent a letter to PHARMAC outlining the government’s expectations and his own priorities, which included a strong and equitable health system for everyone, specifically referencing people with rare disorders.

Rare disease advocates are part of Patient Voice Aotearoa, the alliance which has driven these changes to cancer care. RDNZ supports Patient Voice Aotearoa and will continue to champion the stories of people with rare disorders who fall through the gaps in the system. Petitions for funding for Spinraza for spinal muscular atrophy, and Myozyme for Pompe Disease were presented to the government in May. RDNZ attended the Health Select Committee meeting alongside these groups on 7 August.

As the umbrella organisation for all rare disorders in New Zealand, RDNZ works with more than 140 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.

RDNZ is looking to establish a Genetic and Rare Disorders Alliance in order to provide a stronger voice for the 400,000 New Zealanders living with a rare disorder. RDNZ wants to develop a National Framework and Action Plan like Australia and many other countries. This would focus on improved diagnosis, access to services, medicines, better data and coordinated care, to ensure that all people living with a rare disorder get fair access to healthcare, and decision making is transparent and affordable.

“The health system will continue to fail people living with rare diseases until the fundamental challenges of assessing rare disease treatments are better addressed. RDNZ, our 140 patient organisation members, and our community are eager to ensure our collective voice plays a crucial role in making positive changes,” says Lisa.

About RDNZ

Rare Disorders NZ (formerly NZORD) is a connector hub and collective voice for patients and families affected by rare disorders. Rare diseases affect 8-10% 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.

www.raredisorders.org.nz

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