'Blind spot' in health system due to lack of data on rare disorders

A new report being launched today by Rare Disorders NZ exposes the shockingly low quantity of data available on rare disorders in New Zealand, indicating that government heath entities have no sense of the prevalence of rare disorders or the scale of their impact on the health system.

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The report found that it is not possible to accurately estimate the prevalence of rare disorders in the country due to the low quantity of data available. The primary reason for this is that the classification system for diseases that New Zealand uses does not include most rare disorders.

“As an organisation, we have long been calling for a national data registry on rare disorders, because otherwise how can we know the size of the issue? Without the numbers, how can the Government measure the need, estimate the demand for services and make evidence-based decisions for this population group?”, says James McGoram, Chair of Rare Disorders NZ.

“People affected by rare disorders are falling through the gaps because of a lack of data.”

Based on international data, there are over 6,000 known rare disorders, estimated to affect around 300,000 people in New Zealand. While these disorders individually occur in very small numbers in the population, those affected share the same challenges and systemic barriers in our health system - lack of timely diagnosis, poor treatment access, lack of coordinated care, isolation and for many, being lost in the system.

These conditions can be complex, debilitating and life threatening, and often require a broad range of services. Without access to the appropriate care and treatment, rare disorder patients often end up - unnecessarily - being high-need, high-cost patients.

The report highlights studies from the US that found that an average rare disorder patient has an annual medical cost that is over NZS$40,000 more than an average patient, and that failing to treat rare disorder patients incurs even higher costs.

“Over half a billion dollars is currently being spent on a new data and digital health information system, Hira. We have repeatedly asked for rare disorder data to be captured under this new system, but we have seen no impetus to incorporate rare disorder data collection. To miss this opportune moment would be extremely frustrating, as having the data is the first step to creating meaningful change for the rare community, and will ultimately lead to the health system saving millions,” says McGoram.

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