Largest-ever Survey On New Zealanders Living With Rare Disorders Confirms Huge Health Inequities

A new survey on the impact of living with, or caring for, people with a rare disorder in New Zealand finds alarming failings in the health system, particularly when it comes to timely diagnosis, treatment access and coordinated care for people living with a rare disorder.

Results from the largest-ever survey on living with a rare disorder in New Zealand reveal a health system concerningly ill-equipped to provide adequate care and support for rare disorders, with one in five respondents reporting that it took over ten years to gain a diagnosis, and the majority reporting being misdiagnosed at least once. While 85% reported taking medication for their disorder, most of the publicly-funded medicines used are to relieve pain and inflammation due to the lack of accessible, effective modern medicines for the majority of New Zealanders.

“This is unacceptable in a time of genetic testing and when other OECD countries have implemented clear frameworks to reduce the time to diagnosis, and correspondingly, reduce the impact on the health system,” says Lisa Foster, Chief Executive of Rare Disorders NZ.

The Voice of Rare Disorders survey 2021 was conducted in November 2021 by Rare Disorders NZ to fill a significant data-gap in the New Zealand health system, due to the lack of official data collected on rare disorders. With over 6,000 known rare disorders in existence, collectively this population group is estimated to make up 6% of the New Zealand population, based on international data.

The survey also found a high utilisation of healthcare services among this population group, with one in three respondents having been in hospital for an average of 13 days in the past year, and one in 17 in ICU for an average of seven days. Over 80% had visited a specialist in the 70 days prior to the survey.

“This high-impact on our delicate health system could be rectified with the will and foresight of our leaders to recognise the specific needs of this community and implement a National Rare Disorder Framework, yet there has been little progress, or will, from the Government, to address the inequities since our last survey in 2019, which showed similar findings. Despite our repeated efforts to sound the alarm over this untenable situation, we are repeatedly met with indifference,” says Foster.

“With COVID-19 spreading fast, we are at a crisis point. It is a very worrying time for those with underlying rare medical conditions and compromised immune systems,” says Foster.

Unlike most countries in the OECD, New Zealand has no strategy or national action plan for rare disorders, and New Zealanders have the worst access to publicly funded modern medicines out of 20 OECD countries. Only five modern medicines to treat rare disorders have been publicly funded between 2011-2020 in New Zealand.

“To add insult to injury, we – as the only national charity representing all persons with rare disorders - had our funding cut by half, due to end in 2023. The message the Government is sending to the rare disorder community is that they have no concern for improving their quality of life,” says Foster.

“With a once-in-a-generation health reform underway, the obstacles in the system could be addressed and lead to both economic and societal benefits, reducing the pressure on an already overloaded health system. The new health system will however, only truly be more equitable, accessible, cohesive and people-centred, if people living with rare disorders are officially recognised as a population group, and a specific strategy for rare disorders is included in the health reform.”

About Rare Disorders NZ

RDNZ is the only national organisation supporting all New Zealanders who live with a rare condition, and the people who care for them. RDNZ offers a central starting point for patients and families affected by rare disorders, and helps families, patients and healthcare providers find essential information and support groups.

The 2022 Voice of Rare Disorder White Paper can be found at https://raredisorders.org.nz/

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