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New Zealand Organisation for Rare Disorders

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Phone: +64 4 471 2226

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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

Programme

Chair- Wallace Chapman

8:30 am
Registration-Tea and coffee

9:00
Welcome and Introduction to the day
John Forman
9:10
A health professional's perspective
Christine Forster - GP
9:30
Economic evaluation, decision making and rare diseases  
Alison Davies – Health economist
10:00
Human rights to medical progress                                   
Kris Gledhill – Lawyer & academic
10:20
Public law limits to Pharmac funding decisions
Matthew Smith - Barrister
10:40
Ethics and public decisions about medicines
Andrew Moore - Philosopher
11:00
How do you measure the efficacy of a therapy
Andrew Veale - Respiratory physician
11:15
Funding pharmaceutical treatments for rare diseases in New Zealand; we need a fairer way of doing things
Greg Coyle - Public policy practitioner
11:35
Panel discussion and Q&A

12-12:45
Lunch

12:45
Political Panel. Labour, Annette King; Greens, Kevin Hague; NZ First, Barbara Stewart; National, TBC; Maori Party, TBC.

1:45
A proposition of equality: A patient-centric perspective
Daniel Webby - PNH Patient
2:05
Medical management and clinical trials for rare diseases, and accessing medicines through existing structures
Andrew Marshall - Paediatrician
2:25
Patient, family and support group perspectives
John Forman - Patient advocate
2:45
Breakout sessions

3:45
Report back and discussion

4:30
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.

John Forman
Executive Director, NZORD