OIA response: Dispensing data for siltuximab, tocilizumab and bedaquiline

Request for information relating to data for rare diseases medicines siltuximab, tocilizumab and bedaquiline for financial years 2016/17, 2017/18, 2018/19 and 2019/20.

14 October 2020

Dear [name and contact details redacted]

REQUEST FOR INFORMATION: DISPENSING DATA FOR SILTUXIMAB, TOCILIZUMAB, BEDAQUILINE

Thank you for your request dated 17 September 2020 under the Official Information Act 1982 (OIA) for information relating to data for rare diseases medicines siltuximab, tocilizumab and bedaquiline for financial years 2016/17, 2017/18, 2018/19 and 2019/20. You asked for:

  1. Special Authority (SA) approvals, split by type (initial or renewal) and financial year for:
    1. Siltuximab
    2. Tocilizumab
    3. Bedaquiline
  2. Subsidised units dispensed in the community, split by financial year for:
    1. Siltuximab 100mg vial
    2. Siltuximab 400mg vial
    3. Bedaquiline 100mg tablets x 188
  3. Restriction approvals in the DHB hospitals, split by type (initial or renewal) and financial year for:
    1. Siltuximab
    2. Tocilizumab
    3. Bedaquiline
  4. Purchased units in the DHB hospitals split by financial year for:
    1. Siltuximab 100mg vial
    2. Siltuximab 400mg vial
    3. Bedaquiline 100mg tablets x 188
  5. Number of unique patients with SA and Hospital Medicines List (HML) Restriction approvals, split by type (initial or renewal) and financial year for:
    1. Siltuximab
    2. Bedaquiline
  6. Number of unique patients with SA and HML Restriction approvals, split by type (initial or renewal), DHB and financial year.

Please find the requested data (and associated caveats) attached with this response in the provided template.

Special Authority data for siltuximab, tocilizumab, bedaquiline [XLSX, 33 KB].

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 made some adjustments to the data attached where total applications is equal to or less than 10 (displayed as <10) as we consider this is necessary to protect the privacy of those patients (section 9(2)(a)). Additionally, we have been unable to provide DHB hospital/HML Restriction data as this information is not held by PHARMAC (section 18(g)).

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.

Please note 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