Rare Disorders NZ supports patient advocates

Media release

21 August 2019

Rare Disorders NZ supports patient advocates

Rare Disorders NZ (RDNZ) supports all people living with a chronic health condition who are brave enough to share their experiences with the media to advocate for changes in the health system.

RDNZ is disappointed at the disrespectful insinuations in the media recently that shared personal journeys focusing on medicines access and the group Patient Voice Aotearoa are being pushed by ‘Big Pharma’.

“We stand with the many brave New Zealanders living with rare disorders and cancer who had the courage to share their personal stories with the media. The need is still real whatever the distracting conversation may be,” says RDNZ Chief Executive Lisa Foster.

“Within the OECD, only Mexico spends less per capita on pharmaceuticals than NZ. This situation will not change without people’s voices being heard.”

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 and the groups we support are keen to work with government 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,” says Lisa.

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