People who live with a rare disorder are among the most vulnerable in our society, and we have been failing as a society to value and protect them, writes Chris Higgins.
OPINION
The term “rare’ usually evokes in us thoughts of something precious, something to be treasured.
A taonga.
When we are in possession of something rare, we feel privileged to have it in our lives.
We carefully and meticulously look after it and make sure we do everything possible to keep it in good condition.
To damage it or lose it would be unthinkable.
So why is it the rare people among us - the 6 per cent of the population who live with one or more of the 7000-plus known rare disorders - are not afforded that sentiment in our health and social care services?
Why have we not had systems in place to ensure they are protected, carefully looked after and treated with the respect and dignity they deserve?
Half of those affected by a rare disorder are children - what could be more precious? Instead, we have had no response system in place for managing these out-of-the-ordinary conditions, and as a result, people living with rare disorders have felt invisible; their needs side-lined and put in the “too hard” basket.
People who live with a rare disorder are among the most vulnerable in our society, and we have been failing as a society to value and protect them.
This also makes them some of the strongest and most resilient people I have ever met. And so it is with pride that I reflect on the past month - the second Rare Disorders Month we have marked in Aotearoa.
To see people from all corners of the motu and a wide range of sectors take various initiatives to help bring rare disorders out of the darkness and into the light has been truly heartwarming.
Kiwis have been showing their aroha and support for the rarest among us to let them know they are indeed valued.
At least 22 locally organised events have been taking place across the country, from workplace fundraising morning teas, to school dress-up days and community get-togethers, all in the name of rare disorders.
On Rare Disease Day, 49 buildings and monuments across the nation committed to glowing up for rare. The rare community has felt seen and heard.
They can no longer be ignored. It has also been a month marked with some impactful events.
When we launched our most recent reports, “Impact of Living with a Rare Disorder in Aotearoa New Zealand” and “Impact for Whānau Māori of Living With a Rare Disorder in Aotearoa New Zealand”, we saw high-level political interest across the spectrum.
This launch saw over 100 people attend, including three ministers, top health officials and cross-party representation.
We also brought together top scientists who share a passion for improving the lives of those with rare disorders so they could connect and establish a network of support and knowledge-sharing.
Our role as the connecter-hub for all stakeholders has been central to building networks, knowledge and awareness. The political interest and support we have seen, that we have collectively with patient support groups worked so hard to garner, makes us hopeful we have finally turned a corner in this country and change is on the horizon.
The final draft of the first Rare Disorders Strategy in Aotearoa is being considered by the Minister of Health and is progressing well. The magnitude of this cannot be underestimated.
Up until now, even a definition of the term “rare disorder” in Aotearoa has never been formalised. No data has ever been officially and systematically collected on rare disorders, and the health system has had no guidance on how to manage rare disorder cases. We are hopeful the new strategy will change this.
But the strategy in itself will not be enough. We need to see tangible changes implemented in service delivery to ensure a more responsive health system.
There is still work to be done, but the momentum is there and things are moving in the right direction. Now is not the time to take our foot off the pedal.
The media and public are glowing up - now it’s time for the Government to show up.
Our organisation is facing one of the most important times in our history - to ensure that the strategy leads to meaningful change once and for all for the rare community in Aotearoa, and we will do everything in our power to make sure this happens
Chris Higgins is the chief executive of Rare Disorders NZ.
