Data on narcolepsy medication

OIA response

Thank you for your request dated 3 December 2023 under the Official Information Act 1982 (OIA) for information relating to narcolepsy. You requested:

I am a researcher working with the University of Otago's school of medicine. I am currently working on a project regarding the quality of life for New Zealand patients with narcolepsy. I would like to request the following data from Pharmac NZ:

For these medications:

  • Methylphenidate hydrochloride
  • Dexamphetamine sulfate.
  • Clomipramine hydrochloride.

 Could you please provide data on:

  1. The number of special authorities applied for and approved specially for narcolepsy over the last five years.
  2. Distribution data for the information in (1), broken down by:
  3. Region.
  4. Age groups (including children and adolescents).
  5. Gender groups.
  6. Ethnic groups.

The information you have requested is provided in the excel file attached. Please note that where 6 or fewer people are counted, the number has been suppressed to "<6". This is in accordance with section 9(2)(a) of the OIA, to protect the privacy of natural persons.

Note that clomipramine is open listed on the Pharmaceutical Schedule and is not funded via Special Authority for narcolepsy and so we have been unable to provide specific data for clomipramine for the treatment of narcolepsy. Therefore, this part of the request is being refused under OIA section 18(g).

In making our decision, we have considered the public interest considerations in section 9(1) of the Act. No public interest has been identified that would be sufficient to override the reasons for withholding that information.

We trust that this information answers your queries. Please note, you have the right to make a complaint to the Ombudsman about our response to your OIA, under section 28(3) of the OIA. Details of how to make a complaint(external link) are on the Ombudsman’s website.