Edition of 28 October 2024

Following the launch of New Zealand's first-ever rare disease strategy, OrphaNews sat down with Chris Higgins, Chief Executive of Rare Disorders New Zealand to learn more about the organisation's role in developing the strategy, what it means for the country's rare disease community moving forward, and the importance of engaging with vulnerable populations to achieve equitable policy.

OrphaNews: Tell us about RDNZ: who is your organisation, and what are your main goals and activities?

Chris Higgins: Rare Disorders New Zealand is the national peak body organisation for rare disorders in New Zealand, supporting the 300,000 New Zealanders with a rare disorder and the people who care for them. A significant area of our work is advocating for an equitable healthcare system that works for people living with a rare condition.

OrphaNews: The New Zealand Government recently released their first Rare Disorders Strategy. Can you tell us a little about RDNZ’s involvement in its development?

Chris Higgins: We advocated for years for a strategy for rare disorders to give the health system and other government agencies guidance in how to respond and care for people living with a rare disorder. When the Government finally committed to developing a strategy, we worked closely with the Ministry of Health to ensure the voices of those with lived experience informed the Strategy, and we pushed strongly for key implementable actions to be included that would initiate change to service delivery for people living with a rare disorder.

Chris Higgins receiving a copy of the New Zealand Rare Disorders Strategy from Diane Sarfati, Director General of Health (via Rare Disorders New Zealand)

OrphaNews: Your website mentions the positive approach taken by the Māori Health Authority to engaging Māori in the Strategy’s development. Could you briefly explain for our readers why it’s important to involve Māori in particular in rare disease policy and advocacy? Does RDNZ have any specific strategies for this type of engagement?

Chris Higgins: Health inequity between Māori and non-Māori has been a long-standing concern in New Zealand, deeply rooted in the effects of colonialism. When we undertook our last survey on the rare disorder community in New Zealand, we put concerted effort into increasing our engagement with Māori and were pleased that the proportion of respondents that included Māori as an ethnic group was 13.3%, much closer to National Census estimates than previous 2019 and 2021 surveys. Interestingly, we found the results to be very similar between Māori and non-Māori, indicating that the experiences of whānau* Māori living with a rare disorder were not notably different from others living with a rare disorder. We’ve taken this to indicate that Māori and people with rare disorders are vulnerable population groups who are similarly marginalised from health and other support systems, and therefore we believe that if we get the system right for Māori living with a rare disorder, we’ll get it right for everybody. With this in mind, we pushed to ensure that Māori were able to provide their reflections and input to inform the Strategy, and we worked closely with the Māori Health Authority to make this happen.

OrphaNews: How do you feel about the final version of the Strategy, and how do you foresee it shaping RDNZ’s work moving forward?

Chris Higgins: There is a lot in the Strategy that we campaigned to get included, so it was pleasing to us that we were listened to. It is, however, not perfect and there are some significant omissions, so we will continue to advocate strongly on the issues not covered in the Strategy, such as a pathway for rare disorder medicines. The next steps for us will be pushing for the Strategy to be implemented as soon as possible, so that we can start to see meaningful changes in service delivery.

OrphaNews: Do you have any upcoming events or campaigns you'd like our readers to know about?

Chris Higgins: For the last couple of years, we have extended Rare Disease Day into a month-long Rare Disorders Month campaign during March, to raise awareness of rare disorders through media coverage and events hosted around the country, and we look forward to doing this again in 2025!

Thank you very much to Chris Higgins and the rest of the RDNZ team for answering our questions, as well as for their ongoing work advocating for people living with a rare disease in New Zealand. For more information about RDNZ's work or about the new Strategy, please follow the links below.

*whānau: a Māori word meaning family/loved ones