March has been a month of reflection, but the mahi must go on.
March has been a month of reflection, but the mahi must go on.
OPINION:
March marked the inaugural Rare Disorders Month in Aotearoa – a support and advocacy period for the 300,000 New Zealanders living with one of 6,000 rare disorders.
Rare Disorders Month has seen a successful collaboration of communities across the motu all uniting to glow up and show up for this population, which has arguably been left in the dark.
The month kicked off with a Parent and Caregiver Guide launch at Government House with the tautoko of Governor-General Dame Cindy Kiro. On March 10, Fortune Favours organised a Rare Beer Challenge, with 21 breweries across the country taking part to formulate a ‘rare beer’ and raise over $17,000 for Rare Disorders NZ.
Governor-General Dame Cindy Kiro hugs Misty Kimura, whose daughter Khy Noa lives with a rare chromosomal condition called Trisomy 9.
Support groups and organisations took part, with dozens of satellite fundraising events taking place across the motu. Highlights included the Immune Deficiencies Foundation of New Zealand organising their own paint and sip event, Rowing NZ holding a #GlowUpShowUp dress-up day and Carousel Bar in Dunedin designing their own ‘Glow Up’ cocktail. Meanwhile, hundreds of individuals showed off their #GlowUpShowUp temporary tattoos on social media, and the New Zealand media amplified the kaupapa.
Why do we need a Rare Disorders Month?
Unlike most OECD countries, Aotearoa doesn’t currently have a national health strategy for rare disorders. For whānau Māori with rare disorders, our health system is not set up to adequately support this population, in more ways than one. This causes issues in diagnosis/knowledge of healthcare professionals, data, equity and medicine access for this population, and has left hundreds of thousands of whānau feeling neglected by our healthcare system.
As many rare disorders are genetic, they can affect an entire whakapapa. An example is the CDH1 gene mutation, which can cause a rare stomach cancer prevalent among Māori from the East Coast – my own whakapapa. Stan Walker notably shed a light on his family’s difficult experience with this rare condition.
As part of my mahi for Rare Disorders NZ, I provide a Māori voice internally in the RDNZ team. I also work in supporting Māori whānau on their rare disorder journey. We’ve set up a Facebook group for Māori living with a rare disorder called Te Whānau o Te Kōtuku. The whakapapa of the name comes from the whakataukī “he kōtuku rerenga tahi”, which in English translates to “a white heron’s flight is seen but once” and signifies a rare or special event.
The Facebook group is a small start, but as an organisation we know we need funding to continue to show up for whānau Māori living with rare conditions.
In this Facebook group, I’ve engaged with around 40 Māori whānau dealing with a rare disorder, and have seen first-hand the effects of a lack of a rare disorder strategy. There is a lack of culturally safe care, wrap-around and cultural support and a lack of awareness among practitioners about rare disorders, and limited medical access.
Another significant issue we see for rare disorders is a lack of data. Our Ministry of Health does not currently collect data on rare disorders. We have no official definition of what is considered rare, and no official rare disorder data registry. If we don’t even know the size of the problem, how can we as clinicians begin to train and treat effectively?
As the month ends, the issues whānau with rare disorders face will continue. Meaning, our hīkoi to bring whānau with rare disorders out of the darkness and into the light is not over.
Rare Disorders NZ will continue working with Government, Pharmac, Te Aka Whaiora, Te Whatu Ora - Health New Zealand and Pae Ora to ensure rare voices are heard and a Rare Disorder strategy is prioritised. I hope to see a strong Māori voice represented in this strategy, and an emphasis on collecting data about which rare disorders are most prevalent among Māori.
With more data, Rare Disorders NZ can put a wide net out so we can catch whānau at all parts of their journey, especially those who need more awhi.
As a medical student, I’m excited to connect with Māori doctors in Te Ora so they know that Rare Disorders NZ exist, particularly for their Māori patients. After my graduation in 2025, I hope to enter my career as a doctor in a healthcare system that’s set up to provide people with rare disorders with the support and attention they need.
