Submission to Health select committee on the Medicines Amendment Bill

A call for decisive action for disadvantaged rare diseases – April 2012

NZORD has submitted to the Health select committee on the detail of the Medicines Amendment Bill. While this Bill is primarily about issues related to licensing and prescribing medicines, and adapting the rules to be more responsive to innovative practices, we have focussed in our submission on the inherent discrimination that occurs in many aspects of medicine access for rare diseases.

We note that the lack of priority generally accorded to rare disorders in our health system is not in line with the rights of patients with rare disorders to fair consideration in access to healthcare and medicines. Noting that the Bill does nothing to make a real difference to the significant relative neglect of patients with rare disorders, we ask the select committee to also note other major policy contradictions that compound the problems, including:

  • A lack of transparency and consultation opportunities about medicine budget setting
  • Research policy which encourages development of high value products, yet these are not made available to NZ patients
  • Discriminatory approaches in the medicine assessment process
  • Failure to incorporate the medicine strategy into medicine access decisions
  • Major contrast between the hands-on approach to some health services by politicians, yet hands-off regarding medicines

Our submission concludes with a request to the select committee to take initiatives of its own to investigate and report on these serious problems. Read the full submission form NZORD in this Word doc or in PDF format.

John Forman
Executive Director, NZORD