Campaigns
Campaigns are a powerful way to strategically enact social change.
At Cystic Fibrosis Australia (CFA), one of our key strategic priorities is Advocacy. We advocate for long-term outcomes including key issues such as drug affordability and availability, genetic testing, infection control, and ensuring access to the highest standard of care within medical and allied health services.
To enact these changes, part of our advocacy work is campaigning. This includes speaking with the media and other stakeholders to ensure our voices are heard and amplified. Over the years, CFA has had a prominent voice in many campaigns.
CFA Campaigns
2026 Budget Submission
8th December 2025: Parliamentary Friends of Cystic Fibrosis Group Re-Established
Cystic Fibrosis Australia is proud to announce the re-establishment of the Parliamentary Friends of Cystic Fibrosis Group, a crucial step in strengthening national advocacy for the more than 3,800 Australians living with cystic fibrosis.
This bipartisan group provides a dedicated forum within the Australian Parliament to:
Raise awareness of cystic fibrosis
Support informed, evidence-based discussion
Strengthen collaboration between parliamentarians, clinicians, researchers, and the CF community
Advance policy solutions that improve access to care and health outcomes
We extend our sincere thanks to the Group’s Co-Chairs – Dr Mike Freelander MP, Dr Monique Ryan MP, and Senator Wendy Askew -for their leadership and ongoing commitment to improving the lives of people with CF. Their support ensures that the community’s needs remain visible at the highest level of national decision-making.
The group will hold its first meeting in early 2026, bringing together key stakeholders to set shared priorities and continue driving progress in access to treatment, research, and quality of life for people with CF.
As the national peak body, Cystic Fibrosis Australia will continue to work closely with the Parliamentary Friends Group to amplify the community’s voice and create long-term, meaningful change.
2025 Election: Cystic Fibrosis Australia Launches Election Ask at Parliamentary Event
On Monday, 10 February 2025, Cystic Fibrosis Australia (CFA) launched its Election Ask at the Parliamentary Friends of Cystic Fibrosis Event at Parliament House.
As this was the final event of the current federal term, CEO Jo Armstrong expressed gratitude to the event chairs, attendees, and Members of Parliament who have supported and driven change since the group’s inauguration in 2023. The event also highlighted the significant progress made during this time while reinforcing the urgent need for continued action.
CFA reminded government representatives and stakeholders that while meaningful strides have been made, there is still much to be done to ensure all Australians living with cystic fibrosis can lead full, healthy lives—free from the burdens of this chronic condition.
Cystic Fibrosis Australia Federal Election Priorities
March 2023: Parliamentary Friends of Cystic Fibrosis
On 30 March 2023, Cystic Fibrosis Australia launched the first-ever Parliamentary Friends of Cystic Fibrosis Group – a significant milestone in strengthening national advocacy for people living with cystic fibrosis (CF).
The group brings together Federal Parliamentarians from across the political spectrum who are committed to improving the lives of Australians with CF. Its purpose is to:
Raise awareness of cystic fibrosis and the challenges faced by the community
Strengthen dialogue between policymakers, clinicians, researchers, and people with lived experience
Champion better access to treatments, services, and support
Advance national policy reform that improves health outcomes and quality of life
We extend our sincere thanks to the Group’s Co-Chairs—Dr Mike Freelander MP, Dr Monique Ryan MP, and Bridget Archer MP, for their leadership and for articulating so clearly why the establishment of this group is crucial for our community.
We also express our gratitude to Bradley Dryburgh, Jess Ragusa, and Shannon, who shared powerful and deeply personal stories that highlighted both the challenges and the resilience of people living with cystic fibrosis. Their voices were central in demonstrating why strong, united advocacy matters.
By establishing this group, CFA has created a dedicated platform within Parliament that elevates the needs of the CF community and ensures they are heard at the highest levels of decision-making. It marks an important step in driving meaningful, long-term change for Australians affected by cystic fibrosis.
Cystic Fibrosis Australia is proud to support increased investment in research through the Medical Research Future Fund (MRFF). Strengthening funding for medical research is essential to driving innovation, improving treatments, and ultimately enhancing the quality of life for people living with cystic fibrosis across Australia. Continued investment in research will help accelerate discoveries, support leading researchers, and bring us closer to better outcomes for the CF community.
Letter to Minister Mark Butler Re MRFF
At Cystic Fibrosis Australia, we are committed to ensuring every person living with CF has access to the treatments they need and deserve. Our advocacy work focuses on improving timely access to life-changing therapies, from groundbreaking modulators to essential daily medications.
We work closely with government, clinicians, researchers, and the broader CF community to:
Advocate for faster access to new and innovative treatments.
Ensure treatments are affordable and equitably available across Australia.
Support policies that prioritise patient needs and clinical outcomes.
Amplify the voices of people with CF and their families in national decision-making.
By championing these efforts, CFA is helping to create a future where everyone with CF can live fuller, healthier lives.
Access to the latest treatments like Alyftrek shouldn’t depend on your where you live. That’s why we’re fighting to ensure Australians with CF are provided the same access to others in the world.
Click here to learn more about Alyftrek and how you can help.
FDA Approves New, Once-a-Day CFTR Modulator for People With CF
Alyftrek, triple-combination CF treatment, approved in UK
Trikafta Access For 2 to 5yrs:
29th July 2024:
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26th April 2024: The Pharmaceutical Benefits Advisory Committee (PBAC) has today recommended Trikafta® for children aged 2 to 5 years who have at least one F508del mutation in the CFTR gene.
Trikafta Listed For 6 to 11yrs:
4BS (Brisbane): Life-changing cystic fibrosis drug available to kids on the PBS
Weekend SUNRISE: Kelly & Chase (C7)
Trikafta Listing Delayed for 6 to 11yr olds:
2GB Ray Hadley Show: Miracle drug for sick kids delayed after Department of Health talks break down
PBAC Recommends Trikafta for 6 to 11yrs:
WATCH CHANNEL 7 MELBOURNE NEWS HERE
WATCH CHANNEL 9 NEWS – A CURRENT AFFAIR (SYDNEY) HERE
LISTEN HERE TO BUMMA BIPPERA MEDIA
LISTEN HERE TO 3AW
LISTEN HERE TO VISION AUSTRALIA RADIO – MELBOURNE
LISTEN HERE TO 2SM RADIO
LISTEN HERE TO ABC SUNSHINE COAST
WATCH CHANNEL 10 – THE LOTZ FAMILY HERE
WATCH THE ABC NEWS – THE SEWELL FAMILY HERE
READ THE ABC NEWS ARTICLE ON MILA HERE
LISTEN TO THE ABC RADIO NEWS STORY HERE
Trikafta Approved for 12yrs and over:
READ THE ABC NEWS ARTICLE ON JESS & BRAD HERE
Trikafta Listing Delayed for 12yrs and over:
The Project: Jo Armstrong, Jess Ragusa & Nick Cummins speak about the need to speed up the process
OPEN LETTERS:
From Vertex Pharmaceuticals to CF Community (Mar 2022)
From CFA to CF Community (Mar 2022)
“CFA has received this letter from Vertex for the CF community and we are providing it so that community members can read it. CFA does not endorse this letter. We note that it is a difficult time as so many people in the CF community are awaiting Trikfata and therefore we urge Vertex to extend their compassionate access scheme until Trikafta is listed on the PBS. Currently the compassionate access scheme closes to new applicants in March 2022. From Vertex to CF Community (Feb 2022)
From Vertex to CF Community (Oct 2021)
Trikafta Communique’s:
6 April 2023 – 1ST MAY TRIKAFTA FOR 6-11 YEAR OLDS AVAILABLE ON THE PBS
7 March 2023 – TRIKAFTA UPDATE FOR 6-11 YEAR OLDS
3 February 2023 – ADVOCACY UPDATE
12 January 2023 – YOUR SUPPORT MAXIMISES OUR IMPACT
8 April 2022 – PROGRESS ON PROGRESS
30 March 2022 – IT IS TIME FOR TRIKAFTA – OUR NEXT STEPS FORWARD
27 March 2022 – MISSION ACCOMPLISHED: TRIKAFTA ON THE PBS 1st April 2022
24 March 2022 – TRIKAFTA COMPASSIONATE ACCESS UPDATE
18 March 2022 – PRIMETIME
11 March 2022 – FIFTY EIGHT THOUSAND TWO HUNDRED AND SEVENTY FOUR REASONS
25 February 2022 – SHOUT AND KEEP SHOUTING LOUDER
18 February 2022 – KEEP ON KEEPING ON
10 February 2022 – WE NEED YOU
28 January 2022 – TRIKAFTA APPROVED
10 December 2021 – Waiting In The Wings
7 October 2021 – Trikfata Town Hall Meeting
1 October 2021 – Heavy Heart
23 August 2021 – The Domino Effect
23 July 2021 – Alarm Bells
5 May 2021 – Trikafta Update
26 April 2021 – Have A Heart
23 April 2021 – A Tough Pill To Swallow – ACCESS DEFERRED
9 April 2021 – Alley-Oop and We Score
23 March 2021 – Fight Hard – It is Worth It
8 February 2021 – Numbers – Just two Days To Go
27 January 2021 – No Time Like The Present
12 January 2021 – Close Enough To Taste It
23 December 2020 – Trikafta is on the PBAC March Agenda
17 December 2020 – Wish List
5 December 2020 – The Path
23 November 2020 – Homework
17 November 2020 – There is No Time Like the Present and There is no Present Like Time
4 November 2020 – Milestones and Journeys
28 August 2020 – Tracking Trikafta
The relentless advocacy efforts led by Cystic Fibrosis Australia and our community have yielded positive results, as evidenced by the extension of Orkambi’s access to patients aged 1 to 2 years with double F508del mutation. We are delighted to announce that Orkambi is now officially listed on the PBS from January 1, 2024. This marks a remarkable stride in the right direction, guaranteeing increased access to essential medications for more individuals with CF.
Communique: Hold your Horses, we are at it again.
Communique: Every Child deserves a head start
Patients aged 4 months or older with a G551D or other gating (Class III) mutation on the CFTR gene.Patients aged 4 months or older with at least one non-gating mutation on the CFTR gene that is responsive to ivacaftor potentiation based on clinical or in vitro data.16th January 2026
This joint letter from Cystic Fibrosis Australia and a coalition of patient and consumer organisations is a follow-up to correspondence dated 2 December 2025, and reiterates the call for the urgent public release of the Health Technology Assessment (HTA) Reform Roadmap and Final Report. Representing a unified national voice, the signatories emphasise that transparency at this stage is essential to building trust and enabling meaningful, informed engagement in the reform process.
The letter also reinforces the group’s commitment to working collaboratively with government to ensure HTA reforms deliver timely and equitable access to innovative therapies, and requests ongoing dialogue to support effective, patient-centred implementation.
Read the Follow Up Letter Here
2nd December 2025
This joint letter from Cystic Fibrosis Australia and over 50 patient and consumer organisations outlines key priorities and concerns regarding the implementation of Health Technology Assessment (HTA) reforms in Australia. It highlights the need for clear, measurable outcomes to ensure reforms deliver timely and equitable access to innovative therapies, while emphasising the shared accountability of government and industry.
The letter also calls for greater transparency, stronger recognition of innovation within the HTA framework, and clearer communication on the progress of agreed reforms. Representing a unified patient voice, it reinforces the importance of meaningful consumer involvement to ensure the reformed system delivers real benefits for people living with complex and chronic conditions.
HTA PARLIAMENATARY INQUIRY
September 2025 | LETTER to the Minister for Health, Disability and Ageing – Call for Action on HTA Reform: Cystic Fibrosis Australia has joined 70 patient organisations in calling on the Australian Government to act now on the interim report from the HTA Implementation Advisory Group (IAG).
The letter urges the Government to move beyond review and deliver real reform that speeds up access to innovative health technologies for Australian patients.
About the HTA Review | Australian Government
Cystic Fibrosis Australia (CFA) welcomes the Parliamentary Inquiry into new drugs and novel technologies. The Inquiry by the House of Representatives Standing Committee on Health, Aged Care and Sport will include a focus on access to treatment for rare diseases and conditions where there is high and unmet need. In other words, trying to eliminate the mountainous obstacles we so often see in front of us.
The Inquiry will be chaired by Trent Zimmermann MP and Dr Mike Freelander MP and CFA has written to both asking to be included in the HTA review. All CF drugs go through the HTA process and we would all like it to be a swifter process. Let’s have our say and try and move one enormous mountain out of the way because quite simply, it’s time to level the playing field.
We believe that the Cystic Fibrosis (CF) Community has a wealth of knowledge and real-life experiences that should be shared. They will help ensure that the Inquiry’s outcomes benefit the communities in need.
Consumer submissions addressing the Terms of Reference (ToR) must be submitted by Tuesday, 13 October 2020 and CFA has developed key points to assist you in the process.
We have added suggested consumer comments for each ToR point below and we encourage the CF Community to use this information as a guide. Your own words will be so much more powerful.
The Inquiry’s ToR points are designed to ensure Australia is well positioned to access new drugs and technologies in a timely manner in the future.
Your personal stories and heartfelt experience are incredibly important. These will really make the difference and have a considerable impact. With that in mind we encourage you to share this information if you feel comfortable about doing so.
It is also important when looking at the ToR Topics to consider what has not been included. CFA sees this as a vital component of the ToR review, and we need to be sure the Inquiry is robust and inclusive. You do not have to address all the ToR topics. Just focus on those that have impacted your life.
As we live in a digital world the House of Representatives Inquiry will accept submissions online in the form of a letter, a short document, a more substantial proposal or a video. More information is available here Preparing a submission to an inquiry.
ToR Topics
1. The range of new drugs and emerging novel medical technologies in development in Australia and globally, including areas of innovation where there is an interface between drugs and novel therapies.
Current Issues:
a) Speed to market in Australia when drugs are available overseas
b) Lack of transparency by pharmaceutical companies regarding their submissions
c) The HTA process and timeline relating to a specific drug or treatment should be agreed to by Government departments, Regulators and Sponsor and shared with consumers to manage expectations
d) Consumer consultation should be held at TGA stage and prior
e) Consumer co-design should be rewarded.
2. Incentives to research, develop and commercialise new drugs and novel medical technologies for conditions where there is an unmet need, in particular orphan, personalised drugs and off-patent that could be repurposed and used to treat new conditions.
Current Issues:
a) Innovative trial should be encouraged and incentivised – N of 1, adaptive, organoids and basket trials are all available in Australia – approval pathways for rare diseases should be established
b) Double blind placebo clinical trials are no longer the only option or ‘best practice’ method especially in rare diseases
c) Treatments should be personalised, and precision medicine embraced and encouraged
d) Research into ‘evidence gaps’ for rare diseases should be funded
e) Repurposing of existing treatments should be incentivised and acceleration pathways established.
3. Measures that could make Australia a more attractive location for clinical trials for new drugs and novel medical technologies
Current Issues:
a) Support for disease specific clinical trial networks
b) Incentivise international clinical trials to include Australia by providing benefits such as an expedited HTA approval process when Australian data is available
c) National infrastructure for clinical trials
d) Consumer co-design
e) Streamlined national ethics approval process
f) Every Australian should have access to clinical trials
g) Not for Profit Consumer bodies should be supported to aid clinical trial participant recruitment
h) Embrace innovative clinical trials that include rural and remote communities.
4. Without compromising the assessment of safety, quality, efficacy or cost-effectiveness, whether the approval process for new drugs and novel medical technologies, could be made more efficient, including through greater use of international approval processes, greater alignment of registration and reimbursement processes or post market assessment.
Current Issues:
a) Open collaboration with FDA and EMA
b) Clinical registries should be accredited and then part funded by Government for use in the drug evaluation process
c) International reimbursement contact negotiations to run while consumers benefit from treatments. This would also provide valuable data through post marketing surveillance
e) Set time limits for commercial (pricing) negotiations
f) New clinical trial techniques should be valued in the reimbursement process
g) Add consumers to the HTA process from the beginning
h) Require consumer comments to Pharma TGA and PBAC submissions
i) Provide support, educate and update consumers throughout the process
j) Incentivise compassionate access for a great number of people who are critically ill.
We realise this is a great deal of information to digest so as always CFA is here to help. If you have any questions, please email nickim@cfa.org.au and we will get back to you with a solution.
You can also contact the Government Inquiry Secretariat on 02 6277 4145 or Health.reps@aph.gov.au . There are three ways to deliver your submission…
1. create or log in to My Parliament and set up an account
2. email Health.reps@aph.gov.au
3. email CFA and we will submit for you – CONTACT US
Thank you to everyone who decides to support CFA’s Health Technology Assessment advocacy. It will help eliminate the obstacles and pave the way for faster access to drugs in the future for people with CF. This is a mountain well worth moving because a level playing field is everyone’s right, and in every society’s best interests.
Cystic Fibrosis Australia Advocacy | National Disability Insurance Scheme (NDIS)
The Cystic Fibrosis (CF) Federation of patient organisations and the Cystic Fibrosis community recently prepared submissions for the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) requesting that cystic fibrosis (CF) be included as a disability type in the NDIS.
We welcomed the opportunity and it is pleasing that there is an appetite for inclusion and change. It is important that people with rare diseases and conditions where there is high and unmet need are equitably supported.
The Cystic Fibrosis (CF) Community is collectively an active and forceful advocate for disability support equity and we believe it is fair that people with CF receive the same support as other Australians with the same challenges.
The CF Community has a wealth of knowledge and real-life experiences and we are very happy to share these with The Minister for the NDIS Anne Ruston, NDIA personnel, and the media to benefit people with CF in desperate need.
Cystic Fibrosis Australia vehemently advocates for the implementation of measures to safeguard against genetic discrimination within the realm of life insurance underwriting. The proposal to mandate the disclosure of genetic testing results poses a direct challenge to the principles of preventive medicine, a cause that Cystic Fibrosis Australia ardently champions daily. The organization is dedicated to advancing the well-being of individuals with genetic disorders, and this includes the protection of their rights and privacy in the context of life insurance practices.
Read Cystic Fibrosis Australia’s response here, authored by CEO, Jo Armstrong.
Cystic Fibrosis Australia (CFA) warmly welcomes this Inquiry into Diabetes. Up to a third of people living with cystic fibrosis suffer from diabetes, and require insulin. However, this is a group of diabetes sufferers who are overlooked because their cause of diabetes is cystic fibrosis-related, even though the burden of care and treatment requirements is usually the same as someone living with Type 1 diabetes.
Click here to read Cystic Fibrosis Australia’s full submission to the Cost of Living Inquiry
Drawing on national insights from across the CF community, clinicians, and researchers, the submission advocates for a phased expansion that prioritises these high-risk groups to reduce preventable hospitalisations, protect long-term health outcomes, and address inequities in access to essential preventative care.