Are The Odds Fair On Rare Roulette?

Living with a rare health condition can be a genetic lottery as well as a complete game of chance in terms of the support and healthcare available in New Zealand.

“Anyone, anytime, could find themselves or a loved one having to cope with the symptoms of a rare disorder,” says RDNZ Chief Executive Lisa Foster. “While the disorders themselves may be diverse, the discriminatory barriers within the system are strikingly common, and often exceptionally difficult for the rare disorder community.”

Join Rare Disorders NZ and their collective of more than 100 support groups at Parliament on Wednesday 24 March to handover a petition for reform to Dr Liz Craig MP on behalf of the 300,000 New Zealanders living with a rare disorder. Take your chance and spin the Rare Roulette wheel to learn more about the systemic discrimination and barriers facing the 1 in 17 people living with a rare condition.

“We met with Health Minister Andrew Little on 1 March 2021 to discuss the urgent issues and opportunities for equity. Now is the time for action to ensure our health system is fair for rare. With no current recognition or seat at the table with Government, how can there be authentic inclusion of the rare disorder community?” says Lisa.

The reality of living with a rare condition can mean waiting years for a diagnosis, juggling specialist appointments and no clear pathway to care or social supports including mental health and education support.

“For a progressive and kind country, is this fair? The most heartbreaking aspect is that solutions are available now that are cost effective, so why is nothing happening? This is not a marginalised issue and the whole country would benefit from action,” says Lisa.

International evidence shows that rare disorders need specific pathways and policies, and taking action makes economic, social and moral sense. New Zealanders would be shocked to learn that New Zealand lags behind most OECD countries in supporting people living with rare disorders to access vital health and social care. Many other countries including Brazil, China, the Philippines, Sweden the UK and Australia are taking action to ensure equitable diagnosis, treatment and care.

Rare Disorders NZ have offered to work with the Government to integrate and align rare disorders within the living standards framework and wellbeing budget, as well as co-create a National Rare Disorder Framework.

“We know from international evidence that any review of the current health and disability system without consultation with the rare disorder community will not lead to equity for this vulnerable group,” says Lisa.

There are more New Zealanders living with a rare disorder than those diagnosed with diabetes - an estimated 300,000 people. Within rare disorders there are over 6,000 different conditions with a wide range of symptoms that impact on daily life in varied ways but with common barriers.

“To better support people with a rare health condition, especially during a pandemic, there needs to be acknowledgment of the specific challenges they face as a collective group and a willingness to act,” says Lisa. “With clear recognition as a health priority, practical actions can be implemented for this vulnerable population.”

RDNZ, and their collective of more than 100 rare disorder support groups, are calling for systemic changes to ensure people living with a rare disorder are acknowledged within our healthcare system. The Fair for Rare NZ campaign wants acknowledgement of the common challenges facing the rare disorder community through the development of a National Rare Disorder Framework.

“We hear stories all the time from people living with a rare disorder with the same pleading message that they want respect, to be seen, heard and acknowledged by this Government - what can we tell them? One answer given by the Ministry of Health has been that future changes related to recommendations from the Health and Disability Review will resolve the current barriers. But if there is no awareness of the issues or consultation with the rare community, how can there be confidence with that promise?” says Lisa.

Petition handover and Rare Roulette wheel

Wednesday 24 March
Meet 12.20pm at the Cenotaph

Petition link: https://our.actionstation.org.nz/petitions/reform-our-health-system-to-include-all-new-zealanders-living-with-a-rare-disorder

About RDNZ

Rare Disorders NZ 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.

www.raredisorders.org.nz

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