New Zealand Organisation for Rare Disorders
PO Box 38-538,
Wellington Mail Centre
Phone: +64 4 471 2226
Charities Commission Registration CC22512
Important seminar on medicine decisions and orphan drugs
Last chance for rare diseases? – 1 August 2013
Here is the programme for the seminar held on the 1st August 2013.
NZORD invited all with an interest in good decision making about medicine funding, and in particular, problems associated with access to orphan drugs for rare diseases in New Zealand, to a one-day seminar to discuss these issues.
The seminar was prompted by two consultations that were under way at the time, by Pharmac – their review of their decision criteria, and their proposal to deny funding of a new treatment for a rare disease, PNH. A recent opinion from the Ombudsman, critical of aspects of Pharmac’s policies and procedures, was also highly relevant.
Date: Thursday 1 August 2013 Venue: Amora Hotel, Wellington Time: 9am – 4.30pm
Chair- Wallace Chapman
||Registration-Tea and coffee
||Welcome and Introduction to the day
||A health professional's perspective
||Christine Forster - GP
||Economic evaluation, decision making and rare diseases
||Alison Davies – Health economist|
||Human rights to medical progress
||Kris Gledhill – Lawyer & academic|
||Public law limits to Pharmac funding decisions
||Matthew Smith - Barrister
||Ethics and public decisions about medicines
||Andrew Moore - Philosopher
||How do you measure the efficacy of a therapy
||Andrew Veale - Respiratory physician
||Funding pharmaceutical treatments for rare diseases in New Zealand; we need a fairer way of doing things
||Greg Coyle - Public policy practitioner
||Panel discussion and Q&A
||Political Panel. Labour, Annette King; Greens, Kevin Hague; NZ First, Barbara Stewart; National, TBC; Maori Party, TBC.
||A proposition of equality: A patient-centric perspective
||Daniel Webby - PNH Patient
||Medical management and clinical trials for rare diseases, and accessing medicines through existing structures
||Andrew Marshall - Paediatrician
||Patient, family and support group perspectives
||John Forman - Patient advocate
||Report back and discussion
||Close of seminar
This seminar was highly relevant to all those who are interested in the right to health, medicine policy, quality health care, access to orphan drugs, health technology assessment, distributive justice, and the role of moral factors in health care rationing.
Executive Director, NZORD