For Hariata Wooller and her whānau, being affected by a rare disorder in Aotearoa is “emotionally draining”.
The Wooller whānau continuously adapt their lives to support their daughter Indie, who has the only diagnosis of KDM6B Pathogenic Gene Mutation in the country.
Indie, 10, has had the disorder since birth. Despite displaying symptoms for years and countless doctor visits, a diagnosis only took place three years ago.
It has been almost two years since the Government committed to delivering a national rare disorders strategy, and whānau like the Woollers have been waiting ever since.
In this time, Hariata has travelled to four different countries to get four DNA tests to gain an accurate diagnosis for her daughter.
“There was no information we could gather from anyone here, so we’ve had to go overseas to America, Australia, and Japan to seek answers,” said Hariata.
According to the White Paper recently released by Rare Disorders NZ, one in six whānau Māori had to wait over 10 years for a rare disorder diagnosis, and the majority (75 per cent) had to visit three or more doctors to get a diagnosis.
Additionally, 70 per cent of Māori reported that in the last year, living with a rare disorder has impacted a lot on their health and everyday life. This statistic is higher than non-Māori living with a rare disorder.
The Rare Disorders NZ White Paper and whānau stories like the Wooller’s suggests that the pressures and inequities of the health system for Māori are exacerbated when also living with a rare disorder.
But an Australian clinical geneticist who specialises in indigenous-led rare disorder care believes there is a solution. Professor Gareth Baynam says that Aotearoa has a real opportunity to apply an indigenous Māori health model to a nationwide rare disorder health challenge.
Dr Gareth Baynam.
“The strengths-based focus that is integral to Māori health models, the belonging and becoming, this is where New Zealand has an incredible opportunity to lead the world in the space of rare disorder care,” said Baynam.
Baynam is the Medical Director of the Rare Care Centre and the Perth clinical service. His work to strengthen rare care for indigenous communities through partnerships with Aboriginal healthcare leaders has led to improved equity for indigenous peoples living with rare disorders in Western Australia.
Baynam has seen success with indigenous frameworks in Australia, and has since worked closely with Rare Disorders New Zealand to help advise on an effective strategy for rare disorder care in New Zealand.
“It’s challenging when you are balancing intersections of indigenous health inequities with rare disorders, but it’s clear that a strong, embedded, Indigenous-led and informed approach is the solution. This is what New Zealand does best,” said Baynam.
Rare Disorders presented to parliament recently.
Rare Disorders NZ has strongly recommended that the Government’s incoming strategy incorporates four actions to ensure positive change.
These are establishment of a rare and undiagnosed disorders centre of expertise, establishment of a single barrier-free pathway to rare disorder medicines, incorporation of coding of rare disorders in the classification system of diseases, and recognition of Rare Disorders NZ as a key enabler for the strategy’s implementation.
While Aotearoa New Zealand currently sits toward the bottom of the OECD in terms of its treatment of people with rare disorders, Baynam is excited to see the New Zealand rare disorders strategy and is hopeful that the opportunity to innovate is taken up. He is interested in what New Zealand can teach the rest of the world.
Hariata Wooller is also hopeful.
“I hope they finally realise that there’s a community out there that needs more support. I hope that people with rare disorders will finally get a voice. We just need to be heard.”
March is Rare Disorders Month, and Aotearoa is being called to Glow Up and Show Up for rare disorder communities. Donations can be made to support Rare Disorders NZ via Givealittle at givealittle.co.nz/cause/glowupshowup-for-rare-disorders-month.
