Media release: Government’s Election Promise to Rare Disease Patients Now “Off the Table”

20 February 2018

The New Zealand Organisation for Rare Disorders (NZORD) is stunned that the Government is not honouring its election promise to establish a separate fund which would allow rare disease patients to access vital, life-saving medicines.

Dr Collette Bromhead, NZORD Chief Executive said that the decision to take the promised fund “off the table” is devastating to the 377,000 New Zealand patients and their families who live with a rare and life-threatening disease.

“We have been told that the pledged $20m fund, to be spent over 4 years, will now not go ahead.

“And in a double blow, we have now been notified that the Government is also reviewing the contract which enables NZORD to provide the essential services and support for patients and families impacted by rare diseases.”

“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. 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,” she said.

“During the 2017 election, the Labour Party announced that it would set up a separate fund to enable patients who suffer from rare diseases to access medicines. There are over 7,000 rare diseases and we are well aware of the challenges this creates for any funding model.

“The issue with the PHARMAC model is that it funds medicines based on the number of patients with a disease and while, collectively, over 8% of the population suffer from a rare disease, the number of patients for each disease is relatively small.

“Rare diseases just don't fit into this model and need to be evaluated differently. 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 programmes for life saving drugs which allow rare disease patients better access to medicines.

“It is disappointing that New Zealand is taking a backward step with regard to its rare disease patients and we are urging the Government to honour its election commitment. We are also strongly advocating  to the Government that NZORD's funding contract needs to needs to continue, so that NZORD can provide vital services to patients,” says Dr Bromhead.