Rare Daily Staff

The New Zealand Organisation for Rare Disorders said the New Zealand Government is failing to honor its election promise to establish a separate fund that would allow rare disease patients to access vital, life-saving medicines.

Collette Bromhead, CEO of NZORD, said that the government is not pursue the creation of a $14.6 million (NZ$20 million) fund to be spent over four years as promised. In addition, the government notified the organization that it is reviewing a contract with NZORD that enables the organization to provide essential services and support for patients and families impacted by rare diseases. There are some 377,000 New Zealand patients who live with a rare and life-threatening disease.

“The decision to cancel the fund for medicines is a complete U-turn by the Government and has been done without any consultation with the rare disease community,” said Bromhead. “It leaves these vulnerable patients with no way to access the essential medicines that could extend their life and provide them with a better quality of living.”

During the 2017 election, the Labor Party announced that it would set up a separate fund to enable patients who suffer from rare diseases to access medicines. In New Zealand, the Pharmaceutical Management Agency, also known as PHARMAC, determines which drugs are subsidized for use in community and public hospitals. The problem, she said, is that it funds medicines based on the number of patients with a disease. While more than 8 percent of the New Zealand population suffer from a rare disease, the number of patients for each disease is relatively small.

She called on the government to honor its election promise and to continue its contract with NZORD.

 “Rare diseases just don’t fit into this model and need to be evaluated differently,” she said. “We need to start thinking about the value for the patient, not just the value for money. Many other countries, such as Scotland and Australia, have established programs for life-saving drugs which allow rare disease patients better access to medicines.

February 21, 2018
Photo: Collette Bromhead, CEO of NZORD

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