On 25 July 2024 Aotearoa New Zealand’s first Rare Disorders Strategy was released.
Developed by The Ministry of Health – Manatū Hauora, the Rare Disorders Strategy is the first high level, documented intention to improve the health and wellbeing of people living with a rare disorder and their whānau.
The Strategy also marks the first time Aotearoa New Zealand has a definition of what is considered a rare disorder.
Rare Disorders NZ has long been calling for a national rare disorders strategy to ensure the health system recognises, and equitably meets the needs of the 300,000 New Zealanders living with a rare disorder.
So, this is a major milestone for those affected by a rare disease or disorder in Aotearoa New Zealand.
Why do we need a Rare Disorders Strategy?
The Ministry of Health have heard from people and their whānau living with rare disorders that they often face significant barriers to getting timely, effective and equitable health care. Practitioners may also find it difficult to diagnose rare disorders, or may not know how to support their health and wellbeing.
So, in response to the recommendations in the Pharmac Review Final Report 2022 the previous and current government’s agreed to the development of a strategy to improve the lives of people and whānau living with rare disorders.
It is intended to provide a framework to guide health entities in improving health outcomes for people with rare disorders and their families or whānau. It will uphold the principles of Te Tiriti o Waitangi. It will also allow the health sector to provide better support for people with rare disorders, as well as making it easier for people, practitioners, and organisations to get the information and support that will help.
The strategy will improve system responsiveness and support for people and their whānau living with rare disorders, as well as service providers who often face difficulties meeting patient needs.
It also lays out long-term priorities that will guide health entities in improving health and wellbeing outcomes for people and their whānau with rare disorders over the coming decade to 2034.
Up until now we haven’t really known the extent of the problem here in New Zealand, as we haven’t been keeping accurate records of what is classified as rare, let alone how many it affects.
So what is Rare?
“A rare disorder is a medical condition with a specific pattern of clinical signs, symptoms and findings that affects fewer than or equal to 1 in 2,000 people in Aotearoa New Zealand.
Rare disorders include, but are not limited to, rare conditions among genetic disorders, cancers, infectious disorders, poisonings, immune-related disorders, idiopathic disorders and various other rare undetermined conditions.”
A definition has also been developed for ultra-rare disorders: “An ultra-rare disorder is a medical condition with a specific pattern of clinical signs, symptoms and findings that affects fewer than or equal to 1 in 50,000 people in Aotearoa New Zealand.” (Sources: Aotearoa New Zealand Rare Disorders Strategy)
The thing is, knowledge of rare disorders is expanding rapidly throughout the world, and the strategy will help with adopting advances in science and progress being made internationally.
It will also build on the opportunities we now have in a more unified and consistent health system with a heightened focus on equity of outcomes.
There are over 7,000 known rare disorders, and while each rare disorder may only affect a small number of people in New Zealand, as mentioned previously collectively rare disorders are estimated to affect 300,000 people in New Zealand.
Chief Executive of Rare Disorders NZ Chris Higgins says that “the Strategy is not perfect and there are some significant omissions that we will need to continue to draw attention to, such as the need for a separate assessment pathway for rare medicines, and acknowledgment that rare disorders impact every aspect of life, not just health.
But we believe the Strategy is a good foundation to start improving service delivery for people living with a rare disorder and we look forward to being part of the implementation process,”
“The Strategy is an important first step, but real change will only happen when systemic improvements are implemented, and we will certainly be monitoring this closely.”
You can download the Aotearoa New Zealand Rare Disorders Strategy here.
Also available to download are the supporting documents Aotearoa New Zealand Rare Disorders Strategy Context and Evidence and the Aotearoa New Zealand Rare Disorders Strategy Rare Voices and Aspirations.
Blessings ’til next time 🙂
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