Rare diseases a major public health problem

Rare diseases a major public health problem

Public Health Association media release

18 September 2013

Rare diseases affect nearly 400,000 New Zealanders, the Public Health Association Conference in New Plymouth was told today, yet New Zealand is falling behind in their treatment, diagnosis and prevention.

According to the European Union (EU), a rare disease is one that affects fewer than one in 2000 people. Currently around 8 percent of New Zealanders suffer from rare diseases, and the New Zealand Order for Rare Diseases (NZORD) is calling for the development of a public health oriented rare disease action plan to ease the impact rare diseases have on families and communities.

“Rare diseases are individually rare but collectively common, with some of the more prevalent ailments being Huntington’s disease, a disorder that affects muscle coordination, and adrenoleukodystrophy, which can force the body into a vegetative state. On the whole, rare diseases have long been ignored in New Zealand”, said NZORD’s Executive Director John Forman.

“It’s not because we don't care about people who suffer from rare diseases, it’s just the health system has failed to adapt over the past few decades. While we often see only one or two people in New Zealand suffering from a particular disease, when combined, the total number of people suffering from rare diseases, as well as the sum of their suffering, is a major public health problem.”

He said many diseases that are classified as rare were a complete mystery to medicine and science a generation ago, and many countries are still catching up.

“And because our country is smaller and more isolated than many others, we don't have the same number of specialists to diagnose and treat these diseases.”

He said the EU and other countries have recently recognised that rare diseases are a major public health problem, and have mobilised their resources to implement rare disease policies, promoting research and developing rare disease action plans.

“And it’s time New Zealand started doing the same.”

In February last year, John Forman attended the International Conference on Rare Diseases and Orphan Drugs in Tokyo, where delegates from around the world wrote and published the Yukiwariso Declaration. This document provides advice to governments around the world on the need for specific policy and action plans for rare diseases.

“These plans would cover diagnosing the diseases, providing families with information, increasing healthcare providers’ knowledge and experience and increasing access to services.”

ENDS

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