Rare disorders omission from cabinet paper concerning, says Rare Disorders NZ

Rare Disorders NZ is alarmed that despite Manatū Hauora working for the past year on New Zealand’s first Rare Disorders Strategy to address the inequitable health outcomes for those affected by rare disorders, the rare disorder community has not once been mentioned as a priority population group in a recently released cabinet paper on the Minister of Health’s vision for primary and community healthcare in Aotearoa.

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“Primary healthcare services are the greatest contributor to health outcome inequities for people with rare disorders because of their repeated inability to make timely and accurate diagnoses. It is alarming that the inequities faced by the rare disorder community continue to be overlooked despite all the work that has gone into the Rare Disorder Strategy to date,” says Chris Higgins, Chief Executive of Rare Disorders NZ.

The Rare Disorders Strategy will direct the health system in how to better manage rare disorder cases and address the failings of the health system to meet the healthcare needs of this sizeable population group of 300,000 New Zealanders. Challenges and systemic barriers for people living with a rare disorder include lack of timely diagnosis, poor treatment access, lack of access to modern medicines, lack of coordinated care, isolation, and a general sense of feeling lost in the system.

“We support the underlying principles and design features for primary and community healthcare outlined in the paper, as these reflect what we have long been calling for to improve equitable access to services for people living with a rare disorder. However, we do now hold concerns about the Government’s appreciation of just how important the implementation of the Rare Disorder Strategy is to improve the health and wellbeing of rare disorder patients. If they get the system right for people affected by rare disorders, they get it right for everybody,” says Higgins.

The design features set out in the cabinet paper that should underpin primary and community healthcare in Aotearoa are: comprehensive and accessible, continuous, coordinated, individual and whānau-centred, and fit for purpose and continually improving.

“What's needed is an outward looking primary healthcare system which is connected to national and international centres of knowledge and excellence. There’s not even a hint of this in the Cabinet paper, and there’s therefore a real risk that the proposed locality-based approach to delivering primary health care services will perpetuate for those with rare disorders the worst features of the postcode lottery,” says Higgins.