Funding data for rare disorders medicines

OIA response

3 December 2020

Dear [name and contact details withheld] 


Thank you for your request dated 22 September 2020 under the Official Information Act 1982 (OIA) for information relating to medicines used in the treatment of rare disorders. 

You requested more information related to the 2018/19 list of funded medicines used by people with rare disorders, in addition to the same information for previous financial years (“FYR”). Please find the requested data for FYR 2015/16, 2016/17, 2017/18 and 2018/19, including related explanatory notes and caveats, attached with this response. 

Please note that PHARMAC approaches its assessment of requests for information under the OIA on the basis that, once released, the information becomes publicly available - in other words once we release the information to you it becomes available to any other party in that exact form (whether by you distributing it to others or by virtue of us receiving the same request from a different third party). We have withheld a small amount of information as we consider this necessary to protect the privacy of natural persons (section 9(2)(a)). 

As required under the OIA, we also considered whether, in the circumstances, the withholding of this information was outweighed by other considerations which render it desirable, in the public interest, to make this information available.  In this case we did not consider that the public interest outweighed the reasons for withholding the information. 

You have the right, by way of complaint under section 28(3) of the OIA to an Ombudsman, to seek an investigation and review of our decision. 

We trust that this information answers your queries. We are making our information more freely available, so we will now publish selected OIA responses (excluding personal details) on our website. Please get in touch with us if you have any questions about this. 

Yours sincerely

Rachel Read
Manager, Policy and Government Services