New research has revealed the 300,000 Kiwis living with a rare disorder are being let down by the healthcare system.
Rare Disorders New Zealand has carried out a survey — its largest ever with more than 1000 responses — and presented a white paper to Parliament on Wednesday.
"For people living with a rare disorder today and their carers, the picture remains a difficult one.
"The majority reported that the rare disorder impacts a lot on their health and everyday life, is disabling, and makes a number of everyday activities difficult," the report read.
About half are paying out of their own pocket for healthcare with "the majority finding this hard to manage, or unable to afford it".
"There were few accessible, effective modern medicines available for the majority of people, with most being used to relieve pain and inflammation."
Close to 70% of respondents had to visit three or more doctors to get a diagnosis, while one-in-four had their referral to a specialist declined.
Rare Disorders New Zealand chief executive Chris Higgins said the health system hasn't been as responsive as it should've been.
He said about 7% of the population have a rare disorder and they're missing out on "basic human rights".
"Just doing nothing to support people with rare disorders. Nothing systemic. And just reinforces that there's a need to change."
"We're at least five, maybe 10 years behind what other comparable countries are doing and that's not okay. We need to start accelerating how we support people with rare disorders," Higgins said.
The paper recommends that a rare and undiagnosed centre of expertise be established to help people navigate their condition. It also recommends better data collection and a "barrier-free pathway" to medications that people need.
"It has been almost two years since the government committed to delivering a national Rare Disorders Strategy and the rare disorder community is getting restless to see it. They have already waited so long for a strategy that acknowledges their unique challenges and needs," Higgins said.
Health Minister Shane Reti said he was due to receive a draft Rare Disorders Strategy from the Ministry of Health in the coming weeks, "which I will consider alongside the white paper from Rare Disorders NZ".
International Rare Disease Day this year falls on February 29, the 'rarest day' of the year. Forty-five buildings across New Zealand will be coloured in lights.
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