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NZORD calls for separate fund for people with rare disorders


4 December 2017

NZORD calls on Government to create separate fund for people with rare disorders

The New Zealand Organisation for Rare Disorders (NZORD) is calling on the Minister of Health to urgently establish an Orphan Drugs Fund that sits within the Ministry, operating outside PHARMAC’s current legislative requirements.

“Collectively 8% of Kiwis suffer from a rare disorder, and the current system of funding medicines through PHARMAC means these patients are missing out on potentially lifesaving, or life extending medicines that are more freely available in other countries,” says Dr Collette Bromhead, Chief Executive of NZORD.

“Rare disorders are hugely disabling for patients, and have a massive impact on their families, and their communities,” she says.

“Scotland by contrast, with a comparable population of 5.4 million people, established an Orphan Drugs Fund in 2013, and has since dedicated £140 million to funding medicines for people with rare disorders.

“PHARMAC has just completed a pilot scheme that enabled it to look at new funding solutions for rare disorder medicines. As a result, 10 medicines were funded and PHARMAC are introducing new mechanisms for considering rare disorder medicines. These include establishing a Pharmacology and Therapeutic Advisory Committee (PTAC) for rare disorders, engagement with new and existing suppliers and annual provision for rare disorder funding applications.

“However, this doesn’t go far enough. It’s really tough to get medicines funded for patients with rare disorders, and New Zealand is slipping further and further behind other countries with medicine access,” she said.

“The problem with the PHARMAC model is that it funds medicines on a disease specific population basis. While a huge number of kiwis suffer from rare diseases collectively, the number of patients is relatively small for each particular disease.”

“Rare disorders just don’t fit into the PHARMAC model, and need to be treated separately.”

NZORD highlights issues such as a lack of a timetable for PTAC, the current backlog of 20 funding applications that are still to be considered, and the fact that two out of the ten medicines funded by PHARMAC have no patients currently in New Zealand.

“We want to make sure that the structures put in place by the Government get the best outcomes for patients with rare disorders,” says Dr Bromhead.

NZORD has written a Briefing to the Minister of Health outlining the challenges facing people with rare disorders and an Orphan Drugs Fund is one of the key recommendations.


NZORD is an umbrella group set up to provide information, support and advocacy for patients and families affected by rare disorders, and to assist with the development of support groups for them. Rare diseases affect about 8% of the entire population.

NZORD builds collaborative relationships with health professionals, health planners and researchers to improve knowledge about rare diseases, improve clinical care and develop treatments and cures for rare diseases.

Our network includes more than 140 rare disease support groups and we work closely with more than 60 support groups for common disorders in a range of health and disability sector improvement initiatives.

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