Advocating for Better Care

Follow our progress in advocating for access to medicines and high-quality care for New Zealanders with cystic fibrosis. 

Access to precision medications

Access to other medicines

Tobi Podhaler campaign

Access to equipment

Other advocacy projects

2022

• March – Last year, a member of our CF community made a “consumer” application to Pharmac to have the criteria for access to the Vertex CF modulator therapy Kalydeco widened. The application sought approval to have additional mutations added to Pharmac’s existing access criteria. Pharmac has advised CFNZ that it intends that the application be considered at the meeting of its Respiratory Subcommittee to be held in late April. CFNZ submitted in support of this application late last year. We also referred Pharmac to the substantial package of material submitted in support of Vertex’s Trikafta application, much of which is also relevant to Kalydeco.

• February – Pharmac releases the minutes of the meeting of its Pharmaceutical and Therapeutics Committee (PTAC) where Trikafta was considered. Contrary to the Respiratory Subcommittee’s recommendation, PTAC recommends only a medium priority for funding Trikaftfa for those aged 12 years and older and defers decisions on funding for those aged 6 – 11 years, and for those with genetic mutations responsive to Trikafta in vitro.

• January – Medsafe grants consent for the use of Symdeko in New Zealand – three of Vertex’s four CF modulator therapies have now successfully moved through Medsafe’s process. Only Orkambi remains to be granted consent.

• January – CFNZ presents its submission on the Pae Ora (Healthy Futures) Bill to the Pae Ora Legislation Committee.

2021

• December – Medsafe, New Zealand’s Medicines and Medical Devices Safety Authority, has given consent for the use of Trikafta in New Zealand.
  
  
• December – Medsafe assesses medicines to make sure that they meet New Zealand and internationally recognised standards for quality, safety and efficacy before they can be distributed here.

• December – The consent for the use of Trikafta covers people with cystic fibrosis who are six years and over who have at least one F508del mutation.
  
  
• December – Australia’s Pharmaceutical Benefits Committee (PBAC) recommends Trikafta should be listed on the Pharmaceutical Benefits Schedule. PBAC recommended the listing for people with CF 12 years and older who have at least one F508 del mutation.
  
  
• December – The Minister of Health releases the Interim Report of the Pharmac Review Panel. The Panel concluded that Pharmac is underperforming in helping to remove inequitable health outcomes and that its prioritisation approach appears to disadvantage Māori, Pacific peoples, disabled people, and those with rare disorders. 
  
  
• December – CFNZ makes a written submission on the Pae Ora (Healthy Futures) Bill seeking to ensure that people with CF to have access to high quality care wherever they live, including appropriately resourced centres with skilled clinicians, and access to up-to-date medicines and equipment.

• November – Person with CF Ashley from the Bay of Plenty shares his story on how gaining access to Trikafta through Vertex’s Managed Access Programme has changed his life.
  
  
• October – Pharmac confirms that the agenda for its November Pharmaceutical and Therapeutics Committee (PTAC) includes consideration of Trikafta. PTAC’s role is to provide objective advice to Pharmac and make recommendations as to whether medicines should be included on the Pharmaceutical Schedule.
  
  
• October – Pharmac confirms that it wants to fund Trikafta and adds it to its Options for Investment List. This follows a recommendation from the Respiratory Subcommittee that it be given high priority for funding and an economic assessment by Pharmac. PTAC’S role in considering Trikafta at its November meeting will now be to help Pharmac to determine how Trikafta should be ranked against all the other medicines it wants to fund.
  
  
• October – Patrick Gower interviews Pharmac on TV3 News about the announcement that it wants to fund Trikafta. In the interview, Pharmac’s Director of Operations Lisa Williams calls Trikafta a paradigm-shifting treatment for cystic fibrosis.

• October – The Minister of Health introduces the Pae Ora (Healthy Futures) Bill into Parliament. The Bill proposes the amalgamation of District Health Boards, the establishment of Health New Zealand and a Māori Health Authority, and arrangements for Pharmac.
  
  
• September  – OJ Daniels shares his story of life with CF and why we need Trikafta in a documentary in the Being Me series on Attitude.

• September  – Auckland Branch hosts a Zoom hui on Trikafta, including hearing from Kirsty Parsons on her experience of being on one of the original trials for Trikafta and how she’s faring four years on.
  

• August – Pharmac’s Respiratory Subcommittee considers Vertex’s application for Trikafta. 

• July – Vertex submits its application for funding of Trikafta to Pharmac, a major step forward in securing access for Kiwis with CF. The application to Pharmac follows Vertex’s application to Medsafe in June for approval for the use of Trikafta in New Zealand.    

• June – Vertex submits its applicant for regulatory approval of Trikafta to Medsafe.  Medsafe accepts the application and grants it priority approval status enabling a shorter time for evaluation. Vertex also submits its application to Medsafe for approval of Orkambi. 

• June – Vertex establishes a Managed Access Programme in New Zealand to provide Trikafta free of charge to Kiwis with CF who are in critical need. The Programme is managed globally by Vertex and access is through CF clinicians. CFNZ is delighted that Vertex has established a Managed Access Programme in New Zealand for the small group of Kiwis with CF in critical need but notes that it is no substitute for public funding of Trikafta for all those who would benefit.

• 25 May  – Person with CF Kase Williams, his family and whanāu appear on TV3’s The Hui to show what life is like with CF and how access to Trikafta could change Kase’s life and future. It shows Kase’s daily routine, the family’s journey to Parliament and their participation in Patient Voice Aotearoa’s Lie Down for Life.
  
  
• 22 May  – Two CFers, Kirsty and Angus, appear on TV1 News with Jane Bollard CE of CFNZ to raise concerns about the potential for funding of Trikafta, in the light of the Government’s disappointing amount of funding for Pharmac. Kirsty, who was able to access Trikafta on a UK drug trial, has to return to the UK every 3 months to secure the medicine, and will need to do so until Trikafta is funded in New Zealand.
  
  
• 20 May  – Government announces $200m for Pharmac over 4 years, with $40m for 2021/22. Total funding over 4 years is only half what Pharmac has said it needs to fund the medicines currently on its recommended list. This does not include any new medicines coming through, such as Trikafta. 
  
  
• 12 May  – Patient Voice Aotearoa’s (PVA) petition to double Pharmac’s budget and review Pharmac is presented to Parliament. The petition has over 100,000 signatures and CFNZ and the community participate across the country. 
  
  
• 12 May  – CFNZ meets with Sue Chetwin, Chair of the Independent Panel undertaking the review of Pharmac. The meeting provides an initial opportunity to raise issues over the funding of new medicines, including Trikafta.
  
  
• 12 May  – CFNZ meets with Pharmac to discuss information to be provided to support Vertex’s applications for funding of CF modulators, including Trikafta.
  
  
• 11 May  – Gracie McDonald, an 18 year old CFer facing the prospect of a lung transplant, shares her story on TV3’s The Project. Gracie and her family must decide whether to stay in New Zealand and wait for Trikafta or return to the UK where it is funded, but where she has not lived for 15 years.
  
  
• 29 April  – Pharmac reveals it needs an additional $420 million to fund the 73 medicines currently on its list that it wishes to fund, an increase of 40% on its current budget. This list has grown from 26 medicines in 2014 to the current 73, with some medicines waiting more than 6 years. Despite, this, Pharmac has sought only very small budget increases in recent years.
  
  
• 23 April  – The Australian Pharmaceutical Benefits Committee (PBAC) defers the listing of Trikafta on its Pharmaceutical Benefits Schedule (PBS) to allow for further engagement with Vertex. There is no timeline yet for a final decision.
  
  
• 22 April  – Vertex submits its application to Medsafe for approval of for the use of Symdeko in New Zealand. This application is the first of the three CF modulators (Orkambi, Symdeko and Trikafta as registered in Australia) for which Vertex has advised it will seek approval in New Zealand.
  
  
• 17 April  – 15-year-old twins, Manaia and Lili, who are both facing the prospect of double lung transplants, share their stories on TV3’s Newshub.
  
  
• 16 April  – CFNZ CE writes to Minister of Health and Minister of Finance requesting meetings. CFNZ supporters visit their MPs to talk about the need for Trikafta.
  
  
• 30 March  – CFNZ convenes a meeting with Pharmac, Medsafe and Vertex to discuss how to progress the approval of Trikafta in New Zealand as quickly as possible. Pharmac and Medsafe agreed to consider Vertex’s applications concurrently to shorten the application timeframe. 
  
  
• 24 March  – Vertex announces that the Australian Therapeutic Goods Association (TGA) has approved Trikafta to treat people with CF in Australia with a least one F508del mutation. Approval in Australia can help to shorten Medsafe’s process in New Zealand.
  
  
• 4 March  – CFNZ publishes a statement that welcomes the Government announcement on 2 March that it has commissioned an independent review into PHARMAC. However, CFNZ still urges a substantial increase in funding now to clear the backlog of approved medicines awaiting funding.
   
• 3 March  – The Government announces a review of Pharmac to be completed by December 2021. The review is to be undertaken by an Independent Panel led by consumer advocate Sue Chetwin. The review will investigate and make recommendations on how well Pharmac performs against its current objectives, how its performance could be improved, and whether its objectives should be changed.
  
  
• 26 February – Vertex announces it will submit applications to PHARMAC and Medsafe for 3 CF treatments, including Trikafta, in the coming months. Vertex also stated it is in discussion with PHARMAC relating to a path forward for Trikafta.
   
• 2-4 February  – Patrick Gower's Newshub documentary screens on TV Three, featuring Bella Powell, Ed Lee and Izaeah Twose, who are taking Trikafta. The 3-night series highlights the benefits of Trikafta and the need for its public funding in New Zealand.
   
• 31 January  – CFNZ sends a letter to all Members of Parliament urging their support of the public funding of Trikafta and a substantial increase in public funding for medicines and improvements to speed up access to life-saving medications. CFNZ also asked for support of the Patient Voice Aotearoa petition to reform PHARMAC and double its budget. Read the letter

   

  
  2020

   

  • • • 17 December – CFNZ CE Jane Bollard sends a letter to Andrew Little, Minister of Health, raising the urgent need for Trikafta funding and seeks support to ensure PHARMAC can progress funding approval as soon as possible.
         
      • 1 December – Andrew Little, Minister of Health, attends the CF Christmas Tree Festival at Wellington Airport. The festival raised awareness of CF and reinforced the urgent need for Trikafta funding for New Zealanders with CF.
         
      • 23 November – PHARMAC informs CFNZ of its decision to transition funded access of dornase alfa (Pulmozyme) to a standard Special Authority from 1 December 2020. This decision allows clinicians to apply for funding through the standard Special Authority application process instead of applying to the CF Panel, removes the requirement for spirometry to commence treatment with dornase alfa or to renew access to dornase alfa for PWCF older than 5 years, focuses the criteria on exacerbations rather than hospitalisations for all PWCF and have one set of criteria for all PWCF. Read more about PHARMAC's decision
         
      • 16 October – CFNZ submits feedback to PHARMAC in response to its proposal to transition funded access of dornase alfa (Pulmozyme) to a standard Special Authority. If successful, the effect for people with CF will be improved equity of access to reduce the burden placed on them to access Pulmozyme. It would also remove the requirement of a stable baseline requiring 3 spirometry tests over 6 weeks from the initial criteria. Read CFNZ's feedback letter   Read PHARMAC's consultation document  
         
      • 31 August  – CFNZ signs a Memorandum of Understanding with Trikafta For Kiwis to help advocate for access and funding of Trikafta for New Zealanders.
         
      • 5 August  – CFNZ's advocacy campaign to secure access to precision medications for all New Zealanders with CF is officially renamed Access for Aotearoa. Visit the Facebook page
         
      • 5 August – CFNZ CE Jane Bollard is a guest on MORE FM Manawatu, speaking about the campaign to obtain New Zealand funding of Trikafta and promoting the Double the PHARMAC budget petition.
         
      • 4 August – Owing to public pressure, Vertex announces it will proactively engage with PHARMAC for Trikafta funding.
         
      • 29 July – CFNZ CE Jane Bollard attends a Medicines NZ dinner hosted by the Minister of Health, with a panel discussion on medicines inequality.  
         
      • 6 July – CFNZ submits a paper in response to Medicine NZ's request for feedback on the development of a new generation medicines policy. The submission includes the need for a national rare disorders framework to ensure people living with a rare disorder (300,000 New Zealanders) aren't disadvantaged.
         
      • 22 June – CFNZ CE Jane Bollard has a virtual meeting with Lauren Carey, Vertex Country Manager Australia and New Zealand. Lauren reiterates Vertex's commitment to continuing to engage with PHARMAC, Medsafe and the patient community for access to its latest innovative treatments for people with CF.
         
      • 16 June – The Ministry of Health releases its Health and Disability System Review final report. Key recommendations include the need for better connections between community health care services and hospital services, the need to do more to build better population health, a decrease in the number of DHBs and have a Maori Health Authority. CFNZ submitted feedback for this report in May 2019. Read the full report
        
        
      • 1 June – PHARMAC starts funding Creon Micro, a modified-released granule formulation of pancreatic enzymes. CFNZ first submitted an application for its funding in late 2015 and submitted a letter of support in April 2020 during PHARMAC's open consultation period. Find out more
         
      • 28 April – CFNZ receives the minutes of the Pharmacology and Therapeutics Advisory Committee (PTAC) meeting from 20 & 21 February where it reviewed the application for the TOBI Podhaler for the treatment of cystic fibrosis. PTAC has recommended that TOBI Podhaler (tobramycin dry powder for inhalation) for the treatment of Pseudomonas Aeruginosa infection in cystic fibrosis patients be listed on the Pharmaceutical Schedule with a cost-neutral priority. Further analysis may now be conducted by PHARMAC staff regarding the cost-effectiveness and budget impact of funding TOBI Podhaler. View the application tracker
        
        
      • 20 April – CFNZ CE Jane Bollard attends a virtual meeting with the new country manager of Vertex, Lauren Carey, who’s based in Australia. Top discussion point is the need for funding of Trikafta in New Zealand. Jane and Lauren will meet again once Lauren has met with PHARMAC and has established the next steps for precision medicines in New Zealand with Vertex.
         
      • 20 April – CFNZ CE Jane Bollard meets with Patient Voice Aotearoa (PVA) representatives to discuss progress following the open letter to the Prime Minister on 30 March. PVA reports good success with getting stories in the media. Advocate Lisa Woods continues to work with PVA to develop a communications plan, including charities talking with local media about the impact of COVID-19. 
         
      • April –  CFNZ submits a letter of support to PHARMAC for the funding of Creon Micro during its consultation period which ends 30 April 2020. CFNZ first submitted an application for Creon Micro in late 2015. Find out more. View the application tracker
         
      • 30 March – CFNZ supports the PVA open letter to Prime Minister Jacinda Ardern, calling for increased funding of medications for people with rare disorders, chronic illness and cancer.
         
      • 16 March – CFNZ facilitates Patient Voice Aotearoa (PVA) meeting and its support organisations to develop a strategy and action plan. CFNZ continues to work with PVA post-meeting to refine the strategy and plan.
         
      • 28 February – CFNZ CE Jane Bollard attends the Rare Disorders NZ launch of its Fair for Rare campaign at Parliament. The campaign calls for recognition and awareness of the challenges faced by people with a rare disease, and for the development of a national framework. Find out more. 
        
        
      • 26 February – PHARMAC announces its decision to fund Kalydeco for people with cystic fibrosis with the G551D mutation. Read the full report
        
        
      • 20 February – Tobi Podhaler application assigned to the Pharmacology and Therapeutics Advisory Committee (PTAC) meeting today. CFNZ will receive feedback once the minutes are released.
        
        
      • 14 February – CFNZ CE Jane Bollard writes to the Health Select Committee supporting Eddie Porter's petition for funding of Kalydeco for New Zealanders with G551D cystic fibrosis.
        
        
      • February – All district health boards have now taken over funding of the PARI BOY SX nebuliser and consumables.
        
        
      • 24 January – CFNZ is notified that PHARMAC has reached a provisional agreement with Vertex to fund Kalydeco for New Zealanders with cystic fibrosis. If feedback from a consultation process with health professionals is supportive and the proposal is approved, patients could get access to the drug from as early as 1 March. Read the full media release
        
        

  
  2019

   

  • • • 21 November – The Publicly fund Kalydeco medication for New Zealanders with G551D cystic fibrosis petition is presented to Parliament by Eddie and Emma Porter on behalf of Kalydeco for Kiwis. The petition had 11,000 signatures and was 1 of 8 medicine-related petitions presented.
        
        
      • 6 November – CFNZ launches a survey for the CF community to help identify the top 10 questions people would like researched, to answer the biggest or most important challenges they face. The responses will be reviewed by the CFNZ research development manager and used to create a second prioritisation survey. 
        
        
      • 29 October – CFNZ receives the Medicines NZ report, Funding Medicines in New Zealand: Revision of the Medicines Waiting List to 30 June 2019. Key findings include new listings on the waiting list and the average time a medicine sits on that list. Read the one-page report. Read the full report.
         
      • 21 October – The US Food and Drug Administration (FDA) approved the use of the triple combination CFTR modulator Trikafta (elexacaftor/ivacaftor/tezacaftor) for people with cystic fibrosis aged 12 and over who have at least one F508del mutation in the CFTR gene. CFNZ Chief Executive Jane Bollard writes to Vertex to congratulate them on their success and to urge them to engage with PHARMAC as New Zealanders with CF continue to be disadvantaged with access to precision medicines.
         
      • 2 October – CFNZ receives a feedback summary from PHARMAC regarding managing fairer access to hospital medical devices. CFNZ submitted feedback during the consultation period in early 2019. Read the full PHARMAC report.
        
        
      • 3 September – CFNZ receives an interim report from the Health and Disability Systems Review, which CFNZ submitted feedback for in May 2019. This is a progress report with specific recommendations expected by March 2020. Download the report.
        
        
      • 5 September – CFNZ receives an email from PHARMAC regarding its new online system called PHARMConnect. PHARMConnect includes an online application form so anyone can submit funding applications for medicines online and an updated application tracker to view information on medications PHARMAC is considering funding.
         
      • 11 July – CFNZ is notified by Pharmac that from 1 August 2019, the number of insulin syringes with needles that can be prescribed per prescription will increase from 100 to 200. Read more about its decision
        
        
      • 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.