Application data for multiple sclerosis treatments

28 September 2020

Dear [name and contact details redacted]

REQUEST FOR INFORMATION

Thank you for your request dated 3 September 2020 under the Official Information Act 1982 (OIA) for information relating to Multiple Sclerosis (MS) treatments. You requested:

The following information on the full range of publicly funded MS treatments available since 2000 to today’s date to include:

a.  Gilenya (fingolimod) (2014)
b.  Tysabri (natalizumab) (2014)
c.  Tecfidera (dimethyl fumarate) (2016)
d.  Aubagio (teriflunomide) (2016)
e.  Ocrevus (ocrelizumab) (2019)
f.  Copaxone
g.  Avonex
h.  Beta-interferon

The information we seek for each individual treatment is the:

1.  Number of applications made
2.  Number of approvals
3.  Number of unsuccessful applications
4.  Number of ‘not progressed’ applications
5.  Number of people currently on treatment
6.  Number of people never started treatment despite approval
7.  Number of people who have stopped treatment because of:

a.  voluntary withdrawal
b.  MSTACs decision
c.  meeting the exit criteria

i.  reaching their EDSS exit point
ii.  increased number of relapses
iii.  due to both reasons

d.  other reasons

8.  Number of people who switched treatments
9.  Breakdown of successful applications based on DHB region
10.  Current waiting time for application processing and approval/non-approval

Please find the requested data for questions 1 to 9, from 1 January 2000 to 16 September 2020 (inclusive), attached with this response.

Multiple Sclerosis treatment data [XLSX, 19 KB]

In response to question 10, please note the time for an application to be processed depends largely on the frequency of the MS Treatments Advisory Committee (MSTAC) meetings. Currently MSTAC meets approximately once in every four-week period to provide advice on applications received since the last meeting. Processing time may also vary depending on the number of applications received and the availability of information in the application.

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 patients is equal to or less than 10 (displayed as <10) as we consider this is 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.

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