Implementation of the Rare Disorders Strategy
Working to ensure the Strategy leads to change
The Rare Disorders Strategy outlines the Government's intentions to improve health outcomes for people living with a rare disorder.
While the Strategy guides the long-term priorities for health entities over the next 10 years, the need for improved responsiveness for rare disorders remains urgent. Progressing the intentions in the Strategy requires government agencies to take immediate action to begin developing implementation plans.
Excerpt from the Aotearoa New Zealand Rare Disorders Strategy, Page 22
To date, the engagement from government agencies has been disappointing. You can view our correspondence with Te Whatu Ora | Health New Zealand and Manatū Hauora | The Ministry of Health here.
In summary, at Rare Disorder New Zealand's request, Manatū Hauora | The Ministry of Health endeavored to gather the government agencies tasked with implementing and monitoring the Strategy to discuss implementation. This has been unsuccessful due to Te Whatu Ora | Health New Zealand declining to engage while Te Whatu Ora undergoes their current reset.
Following early indications that Te Whatu Ora would not be engaging in discussion regarding implementation of the Strategy, Rare Disorders NZ wrote to Hon Dr Shane Reti, Minister of Health (letter here), and Professor Lester Levy, Commissioner Te Whatu Ora | Health New Zealand (letter here) to urge them to prioritise planning the implementation of the Strategy. Hon Dr Shane Reti's response can be found here. Commissioner Levy is yet to respond.
Rare Disorders NZ is focused on monitoring progress and holding the government agencies tasked with implementing and monitoring the Strategy to account. These agencies are:
- Manatū Hauora | The Ministry of Health,
- Te Whatu Ora | Health New Zealand,
- Te Pātaka Whaioranga | Pharmac
- Te Tāhū Hauora | The Health Quality & Safety Commission.
We will continue to advocate for an implementation plan and actions within the seven priority areas that were agreed to by our collective of support groups, and reaffirmed following the release of the Strategy.
"The health system is under a reset, yes, but the health of people living with a rare disorder cannot be put on hold any longer. The reset phase could be used to plan to implement cost-effective approaches to respond to the needs of people living with a rare disorder.
Action can be taken now, beginning with an action plan by Te Whatu Ora."
Chris Higgins, CE Rare Disorders NZ
