196 CF v2

Advocating for Better Care

Follow our progress in advocating for access to medicines and high-quality care for people with cystic fibrosis (CF) across New Zealand.  

 

Campaign timeline

Take a look at our news stories below for more information on each stage of our fight for fairer access to life-changing medicines for people with cystic fibrosis. Use the following colour code to find updates on the treatment you are interested in or view the actions we have taken to promote access to all medicines.

Access to medicines

Kalydeco campaign

Tobi Podhaler campaign

Access to equipment

Other advocacy projects


2019

 

  • 14 June - CFNZ sends a submission to Pharmac to support the proposal to increase the number of needles from 100 to 200 per prescription for people with CF-related diabetes.

  • 31 May - CFNZ submits feedback for the Health and Disability Systems Review. 

  • 31 May - CFNZ supports Volunteering New Zealand’s submission to the Department of Internal Affairs Medical Council review of the Charities Act 2005. 

  • 28 May - CFNZ CE Jane Bollard, Kalydeco for Kiwis spokesperson Eddie Porter and CFNZ advocate Lisa Woods meet with a PHARMAC representative to discuss PTAC decision re Kalydeco funding.

  • 8 May - The Pharmacology and Therapeutics Advisory Committee (PTAC) of PHARMAC recommends Kalydeco be funded with a low priority for the treatment of cystic fibrosis with the G551D mutation. Read the PTAC minutes. (The section related to Kalydeco starts at section 4, page 12).

  • May - CFNZ receives an email response from the Medical Council relating to its feedback on the Medical Council of New Zealand’s revised statement on information, choice of treatment and informed consent.

  • May - CFNZ sends a letter to Carmel Sepuloni, Minister for Social Development requesting a meeting regarding WINZ and the ongoing need for PWCF to reapply every three months.

  • 18 April - Associate Professor Cass Byrnes completes submission on behalf of the Clinical Advisory Panel and Clinical Review Group for the Therapeutics Products Bill.
     
  • 17 April - Correspondence received from Pharmac regarding the Tobi Podhaler application. The application is awaiting review at the next respiratory subcommitee meeting which may not be scheduled until early 2020. It may be put on the agenda of the next Pharmacology and Therapeutics Advisory Committee (PTAC) meeting in August which will be confirmed in June.

  • 12 February - The Rare Diseases Subcommittee recommends Kalydeco be funded (with a medium priority) for the treatment of cystic fibrosis in patients with a G551D mutation. Read the full discussion.



2018

 

  • 19 December - CFNZ receives a summary of feedback from Pharmac about how it seeks and incorporates consumers voices into its work, including how it makes funding decisions for medicines and medical devices. CFNZ provided feedback for this report in July.
     
  • 19 November - CFNZ CE submits feedback to Pharmac on the proposal for colecalciferol (vitamin D) oral liquid.

  • 7 November - CFNZ CE receives consumer report from Capital and Coast District Health Board on the design of the new children's hospital.

  • 28 October - Lisa Woods speaks at Chairperson's Conference. Eddie Porter, Kalydeco for Kiwis and Lisa update the group on the Kalydeco campaign.

  • 9 October - Medicines NZ releases report ranking NZ as lowest out of 20 OECD countries for its market access to modern medicines, and offers its support to the Kalydeco campaign.

  • 2 October - Kalydeco campaign progress meeting held.

  • October - CFNZ Board sign off advocacy strategy.

  • 28 September - PHARMAC advises receipt of 13 applications for medications for rare disorders, including Kalydeco.

  • 28 September - Kalydeco campaign launched.

  • 25 September - Kalydeco campaign toolkit ready for use.

  • 11 September - Vertex advises CF Community that they have submitted an application for Kalydeco to PHARMAC.

  • 7 September - Novartis announce the sale of its cystic fibrosis products Tobi Podhaler and Tobi solution to Mylan.

  • 7 September- CFNZ’s Clinical Advisory Panel meet and discuss support for the Kalydeco campaign and other precision medicines.

  • 3 September - PHARMAC’s call for applications for medications for rare disorders close.

  • 26 August- CF community and CFNZ actively encourage Vertex to submit an application for Kalydeco.

  • 25 August - Eddie Porter, Kalydeco for Kiwis campaigner, approaches CFNZ Board stressing urgency for an active campaign. Kalydeco for Kiwis and CFNZ agree work together on a Kalydeco campaign.

  • 23 August - Kalydeco for Kiwis become a public Facebook page with Eddie Porter leading the charge.

  • 17 August - CFNZ CE attends video teleconference hosted by NZORD on rare disorder medicine funding in NZ. An interest group is set up to look at alternative funding arrangements for rare disorders.

  • 5 July - CFNZ provides feedback to PHARMAC regarding consumer review.
     
  • 28 June - PHARMAC calls for submissions of interest for Rare disorders Subcommittee.

  • 1 June - CFNZ engages Lisa Woods, Advocate, to develop an advocacy plan for CFNZ, focusing on access to better medication and care.

  • June - CFNZ advises DHBs of intent to move out of the supply of vital CF equipment, with the view for all DHBs to provide these.

  • May - CFNZ CE joins steering group for Patient Voice Aotearoa- a group set up to express the wider voice of patients, families and whanau in decision making.

  • May - PHARMAC announces new Rare Disorders Subcommittee of Pharmac

  • May - CFNZ approaches two clinicians regarding expressing interest for Rare Disorders Subcommittee.

  • May and June - CFNZ board members, staff and community attend PHARMAC’s consumer voice workshops.

  • May - CFNZ undertakes the CF Insight Survey whose findings indicate 92% of people with CF and their families see advocacy for new medicines and high-quality care as the most important function of CFNZ.

  • 18 April - CFNZ writes to Minister of Health seeking innovative solutions to the funding of precision medicines in NZ.

  • 6 April - CFNZ discusses Tobi Podhaler application with PHARMAC staff.

  • 20 February - PHARMAC acknowledges CFNZ’s application for Tobi Podhaler and requests meeting with respiratory therapeutic group staff.

  • 12 February - CFNZ writes to Prime Minister, Minister of Health and all MP regarding medications and PHARMAC funding.

 

2017

  • November – PHARMAC responds to CFNZ’s presentation on equipment recommending CFNZ’s exit from equipment.

  • September - CFNZ submits recommendations on the development of the new Wellington Children’s Hospital. CFNZ Wellington branch becomes active in community consultation around the new build.

  • July - CFNZ attends a meeting with PHARMAC to express concern over inconsistency in the funding of vital CF equipment by DHBs.

  • March - CFNZ provides feedback to PHARMAC on the Rare Disorders Funding pilot.