2013 Seminar – Orphan Drug Access Seminar

Around 80 people from all around New Zealand, and even some attendees from Australia, attended the full day seminar held at the Amora Hotel in Wellington. It was chaired by the radio and TV host, Wallace Chapman.

View the program.

The seminar was prompted by two consultations that were under way by Pharmac. The first being their proposal to deny funding of a new treatment for a rare disease, PNH, and the second their review of their decision criteria. A recent opinion from the Ombudsman, critical of aspects of Pharmac’s policies and procedures, was also highly relevant.

A range of thorough presentations were made, so as to address the issue from all angles.  There was expert analysis and discussion considering the ethical, economic, medical, scientific, political and personal dimensions of the current lack of access to specialised medicines in New Zealand.

Many questions were asked from the audience and there was much discussion generated throughout the day.

A highlight of the day was in the afternoon during the political panel, which bore great news.The panel consisted of Paul Hutchison, National; Annette King, Labour; Kevin Hague, Green; Barbara Stewart, NZ First. The Maori party could not attend, however provided a written statement that was read out.

Annette King stated that the Labour party commits to delivering an orphan drug access policy, Kevin Hague confirmed the Green party support for this also, and Barbara Stewart confirmed support from NZ First as well Though the Maori Party was not present, we interpret their letter as a clear intention to support a similar change to that discussed and committed to by the other parties.

This is a major step forwards, and provides a solid foundation for change to occur in medicine policy in New Zealand, and a strong indication that the concerns of NZORD and groups within its network, have finally made the breakthrough to become mainstream thinking among politicians, and widely supported by the public at large.

Katie Archer