NZORD and rare disease funding in the media

27 February 2018

Dr Bromhead highlighted Labour’s pledge during the election to establish a separate fund that would allow rare disease patients to access life-saving medicines. NZORD were informed recently that this fund would not be part of the Budget.

"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,'' says Dr Bromhead.

Minister Clark’s response focused on the continuing fund set up and administered by PHARMAC – which uses a model NZORD claims doesn’t work for patients with a rare disorder.

"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,” says Dr Bromhead.

Other articles focusing on the failed election promises featured in the New Zealand Herald and Newstalk ZB.

Double blow for sufferers of rare diseases (Radio New Zealand interview)

Charity upset pre-election pledge for separate fund for rare diseases off the table (New Zealand Herald)

Charity claims Labour to go back on pre-election funding promise (Newstalk ZB)

New Zealand rare disease group says government breaks election promise (globalgenes.org)