Behind every application to the Exceptional Circumstances Framework is a person and a whānau facing a life-changing diagnosis, often with limited remaining treatment options and significant uncertainty about what comes next. For people affected by head and neck cancers — particularly rare cancers such as Adenoid Cystic Carcinoma (ACC) — the question of access to medicines is not abstract policy. It is about whether a person can continue to swallow, speak, breathe comfortably, maintain independence, or spend meaningful time with their family. In this context, delays, uncertainty, and lack of visibility in funding pathways are not administrative issues; they are deeply human ones, experienced at moments of extreme vulnerability.
Link to our Submission

Link to our response to submission questions