As forty-five buildings across the motu glow up for rare disorders tomorrow, Rare Disorders Month will kick off to unite Aotearoa in pushing for impactful health reform.
Tonight, Rare Disorders NZ will launch the latest Voice of Rare Disorders White Paper at Parliament based on their biennial survey. It is currently the only comprehensive data source that outlines the impact that living with a rare disorder has on different areas of life in New Zealand. 59% of survey respondents reported that the disorder impacted a lot on their health and everyday life. Concerningly, one in three people often felt unhappy and depressed and that they could not overcome their problems.
“This is our third white paper, and the data tells us that things have not improved for people living with a rare disorder. They continue to face poorer health outcomes, because we are ill-equipped in Aotearoa to manage rare disorders,” says Rare Disorders NZ Chief Executive Chris Higgins.
The survey results showed that around half of people felt that organising care was difficult to manage. This included finding information on their disorder, their rights and administrative procedures (57%) and finding the right professionals (48%). There were few accessible, effective modern medicines available for the majority of people, with most being used to relieve pain and inflammation, and around half were having to self-fund costs associated with managing their disorder, with most finding the costs high.
Part of the focus for this Rare Disorders Month, Higgins says, is to advocate for meaningful action as the national Rare Disorder Strategy is delivered.
“It has been almost two years since the Government committed to delivering a national Rare Disorders Strategy and the rare disorder community is getting restless to see it. They have already waited so long for a strategy that acknowledges their unique challenges and needs.”
Unlike many other OECD countries, Aotearoa doesn’t yet have a rare disorders strategy. Higgins says Rare Disorders NZ is hopeful that the Ministry of Health will deliver the strategy soon and Rare Disorders NZ would like to see their four bottom lines included. These include a centre for expertise, improved medicine access pathways, coding of rare disorders and acknowledging Rare Disorders NZ as a key enabler of the strategy’s implementation.
“The rare disorder strategy will only be worth the paper it’s written on if we see meaningful action to improve outcomes for people living with rare disorders.”
Throughout March, Aotearoa will be called to Glow Up and Show Up through community events, social media visibility, fundraising and showing up for fri
