NZORD supports rare medicine petitions to government

MEDIA STATEMENT

23 April 2019

The National Organisation for Rare Disorders (NZORD) supports petitions for more effective, equitable outcomes for people with rare disorders, as part of a comprehensive, strategic approach for this vulnerable group of over 377,000 New Zealanders, half of whom are children.

“These petitions are clear symptoms of a need for a more effective, transparent approach to health and intergenerational wellbeing in New Zealand,” says NZORD Chief Executive Gill Greer.

“We recognise the many demands on the government’s budget but no New Zealander should have to move to Australia to access specific life-changing medicines,” says Dr Greer. “New Zealand lags behind other countries in the OECD regarding diagnosis and access to treatment, and recognition of the need for a comprehensive, cohesive framework and action plan.”

Several petitions calling for access to life-changing medicines will be presented to government next month.

“These petitions, and the thousands of signatures of support they have garnered, send a clear message that New Zealanders want better health care and wellbeing for those living with rare diseases,” says Dr Greer.

Spinal muscular atrophy spokesperson Fiona Tolich will present a petition to the Deputy Leader of the National Party, Paula Bennett, on 1 May with more than 15,000 signatures calling for funding for Spinraza, a medicine that has been shown to stop the progression of the disease.

The NZ Pompe Disease Network’s petition 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.

As the umbrella organisation for all rare disorders in New Zealand, NZORD 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.

“NZORD 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 Dr Greer.

“The impact on 8% of New Zealanders and their families, and their ability to lead a normal life the rest of us take for granted cannot be ignored.”

About NZORD

NZORD is a connector hub and collective voice for patients and families affected by rare disorders. Rare diseases affect about 8% of the entire population.

There is no acknowledged definition of rare disease in NZ, however NZORD 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 over 377,000 New Zealanders. Of this number, 50% are children. Around 80% of these conditions are genetic and in 50% of cases the underlying cause is unknown.

www.nzord.org.nz

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