“No country can claim to have achieved universal health coverage if it has not adequately met the needs of those with rare diseases.”
Helen Clark, United Nations

New Zealand lags far behind most OECD countries in supporting people living with rare disorders and their families to access the best healthcare. Australia announced support of a national plan for rare disease patients in late 2018, ensuring that no one is left behind. The New Zealand Government wants to make this country the best place to be a child – but is ignoring these vulnerable children who often fall through the cracks.

In New Zealand a shift in mindset is needed for rare disorders to stop being considered in isolation, and instead to be regarded as a significant factor within health policy frameworks. One step is to call for a national framework that encompasses the collective needs and unique challenges faced by people living with rare disorders. This is in alignment with the global rare disease movement headed by Rare Disease International in its quest for universal health coverage.

Fair for Rare

Rare Disorders NZ is developing a call for a National Framework and Action Plan for all people living with a rare disease.

This will focus on the following areas:

  1. Diagnosis

Many of these disorders are so rare, no one else in New Zealand may be diagnosed and it can be difficult to find support and treatment.

  1. Coordinated care

A coordinated ‘harmonised’ approach to care is essential and would enable inter-disciplinary services and effective collaboration with community service providers, Ministry of Social Development and Ministry of Health

  1. Access to services

Access based on need not on a set condition. Simplified process to enable access to health and disability services so that no-one is left behind because they don’t tick a box.

  1. Access to treatments

Equitable access which can be assessed under appropriate criteria for rare disorders including their small patient populations, progressive disease and limited data.

  1. National rare disease registry

Improved data to ensure accurate awareness of the demographics of rare disorders and to allow responsive access to each other and to clinical trials that may be available.

  1. Research

A national coordinated programme of research on rare diseases that includes active participation by patients, carers and patient advocacy groups.

We are calling for acknowledgement of the common challenges and a commitment to address these challenges. We want inclusion of patients and clinicians in decision making processes, consideration of a wider definition of patient quality of life, and impact of rare disorders for carers.