After years of tireless advocacy, Rare Disorders NZ overjoyed Minister instructs development of Rare Disorder Strategy
Jun 2, 2022, 9:14 AM
Rare Disorders NZ applauds the Government for accepting the Pharmac Review Panel’s recommendation to ‘develop a strategy that will lead to better, more timely services and more equitable support and outcomes for people and whānau with rare disorders’.
The Pharmac model that has existed for the past 30 years has disproportionately failed the rare disorder community in New Zealand, due to its excessive focus on cost-saving, by bulk-buying high demand medicines and failing to enable alternative pathways for low volume treatments.
The Review Panel recognises the equity challenges of rare disorders, and the wider impacts of a lack of a coordinated approach to rare disorders in New Zealand. The report recognises that a cross-agency approach is needed to address the challenges faced by people living with rare disorders, and that this should be led by the Ministry of Health.
Rare Disorders NZ expects the Minister will have a clear expectation that achieving equity must include rare disorders and ensuring access to modern medicines. A Rare Disorder Strategy as part of the Pae Ora (Healthy Futures Bill), is the only way to ensure improved health outcomes for this population group, and Rare Disorders NZ looks forward to liaising with health officials on the development of the Rare Disorder Strategy to ensure it includes the advice and lived experiences of the rare disorder community as recommended by the Review Panel.
Rare Disorders NZ would like to acknowledge the hard mahi of particularly Patient Voice Aotearoa for pushing for the Pharmac Review, and the tireless advocacy of the rare disorder community alongside Rare Disorders NZ in calling for a rare disorder strategy.