Are The Odds Fair On Rare Roulette? – Scoop.co.nz

Thursday, 18 March 2021, 1:26 pmPress Release: Rare Disorders NZ

Living with a rare health condition can be a geneticlottery as well as a complete game of chance in terms of thesupport and healthcare available in NewZealand.

Anyone, anytime, could find themselves ora loved one having to cope with the symptoms of a raredisorder, says RDNZ Chief Executive Lisa Foster. Whilethe disorders themselves may be diverse, the discriminatorybarriers within the system are strikingly common, and oftenexceptionally difficult for the rare disordercommunity.

Join Rare Disorders NZ and theircollective of more than 100 support groups at Parliament onWednesday 24 March to handover a petition for reform to DrLiz Craig MP on behalf of the 300,000 New Zealanders livingwith a rare disorder. Take your chance and spin the RareRoulette wheel to learn more about the systemicdiscrimination and barriers facing the 1 in 17 people livingwith a rare condition.

We met with Health MinisterAndrew Little on 1 March 2021 to discuss the urgent issuesand opportunities for equity. Now is the time for action toensure our health system is fair for rare. With no currentrecognition or seat at the table with Government, how canthere be authentic inclusion of the rare disordercommunity? says Lisa.

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

For a progressive and kindcountry, is this fair? The most heartbreaking aspect is thatsolutions are available now that are cost effective, so whyis nothing happening? This is not a marginalised issue andthe whole country would benefit from action, saysLisa.

International evidence shows that rare disordersneed specific pathways and policies, and taking action makeseconomic, social and moral sense. New Zealanders would beshocked to learn that New Zealand lags behind most OECDcountries in supporting people living with rare disorders toaccess vital health and social care. Many other countriesincluding Brazil, China, the Philippines, Sweden the UK andAustralia are taking action to ensure equitable diagnosis,treatment and care.

Rare Disorders NZ have offered towork with the Government to integrate and align raredisorders within the living standards framework andwellbeing budget, as well as co-create a National RareDisorder Framework.

We know from internationalevidence that any review of the current health anddisability system without consultation with the raredisorder community will not lead to equity for thisvulnerable group, says Lisa.

There are more NewZealanders living with a rare disorder than those diagnosedwith diabetes - an estimated 300,000 people. Within raredisorders there are over 6,000 different conditions with awide range of symptoms that impact on daily life in variedways but with common barriers.

To better supportpeople with a rare health condition, especially during apandemic, there needs to be acknowledgment of the specificchallenges they face as a collective group and a willingnessto act, says Lisa. With clear recognition as a healthpriority, practical actions can be implemented for thisvulnerable population.

RDNZ, and their collectiveof more than 100 rare disorder support groups, are callingfor systemic changes to ensure people living with a raredisorder are acknowledged within our healthcare system. TheFair for Rare NZ campaign wants acknowledgement of thecommon challenges facing the rare disorder community throughthe development of a National Rare DisorderFramework.

We hear stories all the time from peopleliving with a rare disorder with the same pleading messagethat they want respect, to be seen, heard and acknowledgedby this Government - what can we tell them? One answer givenby the Ministry of Health has been that future changesrelated to recommendations from the Health and DisabilityReview will resolve the current barriers. But if there is noawareness of the issues or consultation with the rarecommunity, how can there be confidence with that promise?says Lisa.

Petition handover and RareRoulette wheel

Wednesday 24 MarchMeet12.20pm 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

Rare Disorders NZ is the connector hub andcollective voice for patients and families affected by raredisorders. Rare health conditions affect 6% of NewZealanders.

There is no acknowledged definition ofrare disease in NZ, however RDNZ follows the European Unionpolicy which defines a disorder as rare when it affectsfewer than 1 in 2,000. More than 6,000 rare disorderscollectively affect around 300,000 NewZealanders.

http://www.raredisorders.org.nz

Scoop Media

Become a member Find out more

Here is the original post:

Are The Odds Fair On Rare Roulette? - Scoop.co.nz