Timeline of events
12 December 2013
PHARMAC announce that eculizumab will not be funded in New Zealand on the basis of cost.
21 May 2013 - 30 August 2013
Public consultation "proposal to decline a funding application for Soliris" launched by PHARMAC. 296 (98%) submitters reject the proposal to decline funding.
14 May 2013
Minutes from PHARMAC's August 2012, February and March 2013 meetings in relation to the funding of Soliris for PNH have not been released. No indicative timeline provided by PHARMAC as to; a) when a recommendation will be made, or b) when the funding decision will be made.
18 April 2013
PHARMAC advise via email that they cannot provide a timeline for releasing a recommendation on the Soliris funding application and that they will be holding a board meeting to discuss the application "at the end of April".
March 2013
PHARMAC’s Pharmacology and Therapeutics Advisory Committee hold teleconference to further discuss Soliris funding application.
28 February 2013
PNHSANZ presentation at World Rare Disease Day event hosted by NZORD in Wellington. VIVA! Communications coordinates a local Wellington media announcement.
23 February 2013
PNHSANZ friends and supporters take part in Lake Taupo "Great Lake Relay" event. VIVA! Communications coordinates a local media announcement.
22 February 2013
Email advice received from PHARMAC, stating that a recommendation regarding the Soliris funding application should be available in "second week of April".
14 February 2013
PHARMAC’s Pharmacology and Therapeutics Advisory Committee meet to discuss haematology sub-committee recommendations in relation to Soliris application. Meeting adjourned for further consideration.
31 January 2013
Request to meet with Hon Nikki Kaye, MP, Member for Auckland Central. Request accepted and meeting scheduled.
29 January 2013
Letter from Steffan Crausaz, chief executive of PHARMAC - advice from letter; "Following PTAC’s consideration next month, we will be in a better position to inform you of eculizumab’s (Soliris) funding status. Also at that time, should we consider it appropriate, we may have further discussions with the supplier to negotiate supply arrangements. "
29 January 2013
Two constituents with children affected by PNH request to meet with their MP, Rt Hon John Key. Requests declined.
24 January 2013
PNHSANZ launch national media campaign. VIVA! Communications coordinates national news media announcement from Auckland.
13 December 2012
Letter from PNHSANZ to Steffan Crausaz, chief executive of PHARMAC, requesting feedback and a timeline in relation to the process for making Soliris available to PNH sufferers in NZ.
11 December 2012
Letter from Steffan Crausaz, chief executive of PHARMAC, to MP Ian Lees-Galloway advising that PTAC haematology sub-committee recommended funding Soliris with a low-priority. Also notes that PTAC will assess haematology sub-committee recommendations at the February 2013 PTAC meeting.
22 November 2012
PNHSANZ Charitable Trust incorporated.
12 November 2012
Second PNH patient and supporter meeting held in Auckland.
2 November 2012
Letter from Hon Tony Ryall, health minister, indicating that recommendation from PHARMAC on the Soliris application for funding will be made available "early 2013".
12 October 2012
A document of compiled letters from PNH patients and supporters sent to all 121 Members of Parliament, including the Health Minister, highlighting the urgency required in making Soliris available to NZ patients.
6 August 2012
The Haematology sub-committee of PHARMAC’s Pharmacology and Therapeutics Advisory Committee meet to discuss Soliris as a treatment for PNH.
2 August 2012
Letter sent to Haematology sub-committee of PHARMAC’s Pharmacology and Therapeutics Advisory Committee outlining the importance of the Soliris treatment to PNH patients and the urgency required in making a decision. No response received.
14 May 2012
Professor Peter Hillmen, St. James's University Hospital, Leeds (UK) provides letter to Alexion Pharmaceuticals with strong rebuttal of all points noted in the minutes from the February 2012 PHARMAC meeting, concluding;
"I therefore believe that given the huge amount of evidence in support of eculizumab (Soliris) in PNH there is no doubt that the drug has a major impact not only on quality of life and transfusions but also on life-threatening complications and on survival. This has led to approval and funding in many countries throughout the world including in England. The position taken by the PHARMAC report cannot be supported by the available compelling evidence in favour of eculizumab in PNH"
14 April 2012
PNH patients and supporters meet in Auckland. Presentations by Michael Brown of the Royal Melbourne Hospital, Rebecca Weeks of Leukaemia & Blood Cancer NZ, Chhean Khoun of the Australian PNH Support Association and Dr Richard Kelly of St. James's University Hospital, Leeds (UK). Patients express desire to formalise as an association.
16 & 17 February 2012
PHARMAC's Pharmacology and Therapeutics Advisory Committee (PTAC) meet to discuss Soliris application. The committee recommend that the application be declined and referred to Haematology Subcommittee for consideration.
November 2011
Application by Alexion Pharmacueticals to PHARMAC for Soliris to be added to the NZ Pharmaceutical Schedule for the treatment of Paroxysmal Nocturnal Haemoglobinuria. In short - this is the request for the treatment to be funded for PNH patients in New Zealand.
April 2011
Soliris approved by Medsafe as a prescription medicine for the treatment of Paroxysmal Nocturnal Haemoglobinuria (PNH).
PHARMAC announce that eculizumab will not be funded in New Zealand on the basis of cost.
21 May 2013 - 30 August 2013
Public consultation "proposal to decline a funding application for Soliris" launched by PHARMAC. 296 (98%) submitters reject the proposal to decline funding.
14 May 2013
Minutes from PHARMAC's August 2012, February and March 2013 meetings in relation to the funding of Soliris for PNH have not been released. No indicative timeline provided by PHARMAC as to; a) when a recommendation will be made, or b) when the funding decision will be made.
18 April 2013
PHARMAC advise via email that they cannot provide a timeline for releasing a recommendation on the Soliris funding application and that they will be holding a board meeting to discuss the application "at the end of April".
March 2013
PHARMAC’s Pharmacology and Therapeutics Advisory Committee hold teleconference to further discuss Soliris funding application.
28 February 2013
PNHSANZ presentation at World Rare Disease Day event hosted by NZORD in Wellington. VIVA! Communications coordinates a local Wellington media announcement.
23 February 2013
PNHSANZ friends and supporters take part in Lake Taupo "Great Lake Relay" event. VIVA! Communications coordinates a local media announcement.
22 February 2013
Email advice received from PHARMAC, stating that a recommendation regarding the Soliris funding application should be available in "second week of April".
14 February 2013
PHARMAC’s Pharmacology and Therapeutics Advisory Committee meet to discuss haematology sub-committee recommendations in relation to Soliris application. Meeting adjourned for further consideration.
31 January 2013
Request to meet with Hon Nikki Kaye, MP, Member for Auckland Central. Request accepted and meeting scheduled.
29 January 2013
Letter from Steffan Crausaz, chief executive of PHARMAC - advice from letter; "Following PTAC’s consideration next month, we will be in a better position to inform you of eculizumab’s (Soliris) funding status. Also at that time, should we consider it appropriate, we may have further discussions with the supplier to negotiate supply arrangements. "
29 January 2013
Two constituents with children affected by PNH request to meet with their MP, Rt Hon John Key. Requests declined.
24 January 2013
PNHSANZ launch national media campaign. VIVA! Communications coordinates national news media announcement from Auckland.
13 December 2012
Letter from PNHSANZ to Steffan Crausaz, chief executive of PHARMAC, requesting feedback and a timeline in relation to the process for making Soliris available to PNH sufferers in NZ.
11 December 2012
Letter from Steffan Crausaz, chief executive of PHARMAC, to MP Ian Lees-Galloway advising that PTAC haematology sub-committee recommended funding Soliris with a low-priority. Also notes that PTAC will assess haematology sub-committee recommendations at the February 2013 PTAC meeting.
22 November 2012
PNHSANZ Charitable Trust incorporated.
12 November 2012
Second PNH patient and supporter meeting held in Auckland.
2 November 2012
Letter from Hon Tony Ryall, health minister, indicating that recommendation from PHARMAC on the Soliris application for funding will be made available "early 2013".
12 October 2012
A document of compiled letters from PNH patients and supporters sent to all 121 Members of Parliament, including the Health Minister, highlighting the urgency required in making Soliris available to NZ patients.
6 August 2012
The Haematology sub-committee of PHARMAC’s Pharmacology and Therapeutics Advisory Committee meet to discuss Soliris as a treatment for PNH.
2 August 2012
Letter sent to Haematology sub-committee of PHARMAC’s Pharmacology and Therapeutics Advisory Committee outlining the importance of the Soliris treatment to PNH patients and the urgency required in making a decision. No response received.
14 May 2012
Professor Peter Hillmen, St. James's University Hospital, Leeds (UK) provides letter to Alexion Pharmaceuticals with strong rebuttal of all points noted in the minutes from the February 2012 PHARMAC meeting, concluding;
"I therefore believe that given the huge amount of evidence in support of eculizumab (Soliris) in PNH there is no doubt that the drug has a major impact not only on quality of life and transfusions but also on life-threatening complications and on survival. This has led to approval and funding in many countries throughout the world including in England. The position taken by the PHARMAC report cannot be supported by the available compelling evidence in favour of eculizumab in PNH"
14 April 2012
PNH patients and supporters meet in Auckland. Presentations by Michael Brown of the Royal Melbourne Hospital, Rebecca Weeks of Leukaemia & Blood Cancer NZ, Chhean Khoun of the Australian PNH Support Association and Dr Richard Kelly of St. James's University Hospital, Leeds (UK). Patients express desire to formalise as an association.
16 & 17 February 2012
PHARMAC's Pharmacology and Therapeutics Advisory Committee (PTAC) meet to discuss Soliris application. The committee recommend that the application be declined and referred to Haematology Subcommittee for consideration.
November 2011
Application by Alexion Pharmacueticals to PHARMAC for Soliris to be added to the NZ Pharmaceutical Schedule for the treatment of Paroxysmal Nocturnal Haemoglobinuria. In short - this is the request for the treatment to be funded for PNH patients in New Zealand.
April 2011
Soliris approved by Medsafe as a prescription medicine for the treatment of Paroxysmal Nocturnal Haemoglobinuria (PNH).
