It’s time to make the 300,000 families affected by rare disorders a health priority

Olivia - Rare Disorders NZ

It’s time to make the 300,000 families affected by rare disorders a health priority

Sue Haldane, a mother of a child with a rare disorder, has spent 17 years dealing with barriers within our health system to ensure her daughter Lizzie’s needs are met. Now Sue is determined that the journey will be easier for future generations of New Zealanders living with a rare disorder.

Despite the low prevalence of each rare disorder, collectively they affect many families, with 1 in 17 people living with a rare health condition – more than those diagnosed with diabetes.

Lizzie was born in 2003. She has a genetic rare disorder, 22q Deletion Syndrome, which leads to heart abnormalities, weakened immune system and developmental delays.

Sue and Lizzie | Rare Disorders NZ
Sue and Lizzie

Sue, on behalf of Rare Disorders NZ, has launched a Parliamentary Petition seeking essential systemic changes that would benefit everyone within the rare disorder community, and wider society as well.

My Petition urges the Government to acknowledge the universal challenges faced by people living with a rare disease, and the unfairness within the current system, by committing to the long overdue development of a New Zealand National Rare Disorder Framework,” says Sue.

I would make no changes to Lizzie’s lovely self, but I crave many, many changes to the world she lives in.”

For many of the 6% of New Zealanders living with a rare disorder every day is a fight, with many feeling neglected and invisible,” says Rare Disorders New Zealand Chief Executive Lisa Foster. “Currently their healthcare is fragmented, there’s little cohesiveness in services, there’s inequitable access and high levels of stress. This leads to high uncertainty in all aspects of their life and often no clear pathway for diagnosis, treatment and care. Many vulnerable patients continue to fall through the cracks. As a country with a keen sense of fairness it simply doesn’t make sense to have no formal policy or framework in place to support them”.

The recommendations of the Health and Disability System Review aim to address inequities in the system and yet those with rare disorders are still not recognised as part of the changes.

Rare Disorders NZ says New Zealand lags behind almost every other developed nation by not providing a basic national framework or set policy to support these patients and ensuring access to cohesive healthcare and simple fairness so that the type of disease does not detrimentally affect access to care and supports. Rare Disorders NZ and its 140 support groups are now calling for the immediate establishment of a New Zealand National Rare Disorder Framework to bring New Zealand into line with other countries.

Most developed countries, including Australia, the UK, EU countries and many in Asia and South America all rightly recognise the importance of implementing a National Rare Disorder Framework, strategy or policy to ensure no-one is left behind” says Foster. “Yet here in New Zealand, a country known for its empathy and fairness, we are falling behind. New Zealand is one of only five nations to have no commitment to address these challenges. However, we have the opportunity to do the right thing and develop a national rare disorder framework to change lives. The social, health and economic cost of ignoring this issue is too high a price to pay and must be resolved”.

There in a unique opportunity now to create a system that includes the rare disorder community by acknowledging this vulnerable group then minimising the significant challenges they currently face,” says Lisa.

Sue has been Lizzie’s advocate, her medical officer, her education director, her social worker, her therapist, her nutritionist, her dietician, work placement officer and retirement planner.

There’s has been no shape or coordination to Lizzie’s care. We handle each health, education and social ‘portfolio’ separately. We tell her story again and again and again. We attain a level of health or stability – and we are discharged. But this is a lifelong condition from which Lizzie can only be discharged by death,” says Sue.

I want to make sure the thousands of families like ours have an less fragmented and stressful journey through the New Zealand health system, with a clear blueprint for coordinated family care,” says Sue.

“Of course, the person diagnosed should receive laser-like focus, but primary caregivers also need a strategic support plan and formalised care. Burning out when you are the mother of a child of complex needs is a frightening experience.”

Read Sue and Lizzie’s story on the RDNZ website.

Petition of Sue Haldane for Rare Disorders NZ: Develop a National Rare Disorder Framework: 

About RDNZ

Rare Disorders NZ (formerly NZORD) is the connector hub and collective voice for patients and families affected by rare disorders. Rare health conditions affect 6% 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 fewer than 1 in 2,000. More than 6,000 rare disorders collectively affect around 300,000 New Zealanders. Of this number, 50% are children.

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