May 14, 2024, 10:33 AM
Valuing life

On 29 and 30 April, Rare Disorders NZ attended the inaugural Valuing Life Summit at parliament, organised by Patient Voice Aotearoa and Medicines New Zealand and hosted by the Honourable David Seymour, Associate Minister of Health (Pharmac).

The impetus for the summit was to bring together experts and stakeholders to find a way forward to improving medicine access in Aotearoa.

Attendees included patient advocates, Pharmac staff, top Manatū Hauora - Ministry of Health officials, MPs, the new Board Chair of Pharmac Paula Bennett, clinicians, industry representatives and academics.

The summit included moving speeches, expert panel discussions and thought-provoking workshops, encouraging high-level discussions on ways to advance medicine access. Rare Disorders NZ CE Chris Higgins participated in a panel discussion on the importance of optimising the patient voice.

Aotearoa sits at the bottom of the OECD when it comes to investment in modern medicines, and the situation is particularly dire for rare disorder medicines, with no specific pathway for these high-cost, low volume medicines.

Rare Disorders NZ continues to advocate strongly for the establishment of a single barrier-free pathway for rare disorder medicines.

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