Submission on the review of the Exceptional Circumstances Framework Consultation

Rare Disorders NZ provided feedback on the Review of Pharmac's Exceptional Circumstances Framework.

Rare Disorders NZ sees five areas of change that are urgently needed in this framework.

1. Introduction of a Specific Assessment Pathway for rare disorder medicines.
We recommend equitable access to modern rare disorder medicines is established through a specific rare disorder assessment pathway. We see this as an essential outcome of this review.

2. Future proof the Framework
We recommend this review includes a future focus, with a subsequent review date and horizon scanning built in.

3. Make the system more efficient for low volume medicines
We recommend changes are made to reduce administrative load for both clinicians and Pharmac, while increasing consistency and certainty for patients. 

4. Increase transparency and formalise discretion
We recommend Pharmac becomes more transparent about decisions on applications made through the Framework. The discretion currently applied within the Framework also needs to be formalised.

5. Increase guidance and support for clinicians making applications
We recommend that Pharmac develop a comprehensive clinician guide, including worked examples of NPPA applications. Additional practical support pathways for clinicians also need to be developed

Read our full submission here.