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

Trikafta Access For 2 to 5yrs: 

 

29th July 2024:

Announcement: Trikafta PBS Expansion to 2+ year old’s.

 

Cystic Fibrosis Australia, as your Peak National Body, are thrilled to announce that Trikafta will now be available on the Pharmaceutical Benefits Scheme (PBS) for children aged 2+ with at least one F508del mutation starting Thursday 1st August 2024. This significant expansion will benefit approximately 290 children, including 100 children who will gain access to a modulator for the first time.

 

Your voice has been heard.

 

Thank you to everyone who wrote a submission to the Pharmaceutical Benefits Advisory Committee (PBAC) and shared their story, including people like Ashley and Lucas. You may remember that only a few weeks ago we were seeking your support for our advocacy for little children waiting for Trikafta, children like Heath.

 

At just 4 years old, Heath lives with the challenges of cystic fibrosis, a genetic condition that affects the lungs and digestive system. However, in those four years, Heath and his family have benefited from an incredible care team, learned how to manage his CF with treatments and therapies, and will now have access to a modulator once listed on the PBS. Ashley and Lucas have been awaiting the PBS listing of Trikafta before he commences school. Like any parents, they wanted to ensure he was equipped for all that is ahead of now. Thanks to ongoing advocacy efforts, Heath’s story is significantly different than many CF patients born in previous decades.

 

Advocating together is transforming lives.

 

It is evident that working together gets results. Thank you to everyone who has been a part of this great outcome, including our dedicated Federation Members who tirelessly work with Cystic Fibrosis Australia around the country. We extend our heartfelt thanks to the Health Department, Vertex Pharmaceuticals, and everyone involved in making this expansion possible. Our collective efforts have driven real change, especially for our youngest CF Warriors, and we should all take pride in this achievement today.

 

Together, we can drive the change that our community needs.

 

With over 40 years of experience, CFA has forged strong long standing collaborations, networks, and partnerships that drive continuous and transformative changes for our community. The expansion of Trikafta is a testament to the effectiveness of our persistent efforts and your faithful partnership with us. Thank you.

 

Today’s announcement underscores the importance of persistent and collaborative work within this space. We celebrate this milestone alongside the hundreds of children and their families who will now benefit from earlier access to this life-changing treatment. Early intervention has the potential to limit lung damage and improve daily life, thus enhancing both quality of life and life expectancy for children with cystic fibrosis.

 

Together, we will continue to fight for our community, ensuring that all aspects affecting those with CF are continually addressed and advocated for. Today, we celebrate progress and look forward to more advancements in the future. I recognise that today will be difficult for people who do not benefit from this announcement, and it is clear that we still have so much more work ahead of us. Today does mark progress in furthering our cause.

 

We won’t stop advocating for all people with cystic fibrosis as we continue to strive to ensure that everyone has the support they need.

 

Read the Health Minister Mark Butler Transcript from the Announcement

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.

While we welcome today’s positive news, we recognize the urgency of Trikafta being listed on the PBS. Urgent action is essential to ensure timely access and we’re actively advocating to minimize delays between PBAC recommendations and PBS listings.
Read the full communique here: https://bit.ly/4dcqg42
 
 
 
 
Trikafta Listed For 6 to 11yrs: 

A Current Affair:  Aussie families offered hope as cystic fibrosis drug Trikafta subsidy is announced (C9)

ABC NEWS: Life extending cystic fibrosis drug Trikafta made available ont he PBS to children aged 6 and over

Sydney Morning Herald: Trikafta medication:  Children under 12 to receive life-saving drug to treat cystic fibrosis

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

WATCH WIN NEWS TOOWOOMBA 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:

WATCH NINE NEWS HERE

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

Sky News The Chris Kenny Show

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 CFA to Vertex (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

1st June 2024: We are thrilled to share that starting from 1 June 2024, Kalydeco (ivacaftor) will be available on the Pharmaceutical Benefits Scheme (PBS) for patients aged 4 months and older with certain CFTR mutations. This is a major step forward for the cystic fibrosis community in Australia!
 
Who’s Eligible?
🌹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.
 
With this reimbursement, approximately 95 people with cystic fibrosis will have access to a CFTR modulator for the first time. This milestone offers new hope and improved treatment options for those affected by CF in Australia.
Let’s celebrate and share this significant progress together and continue our journey towards better health outcomes for all with CF. 
 
For more information, follow the link: https://bit.ly/3R6Ad9C
 
15th December 2023: The PBAC made a crucial recommendation for Kalydeco (Ivacaftor) extensions.
To see the full list of gene mutations that now have access to Kalydeco, and to read more details about this announcement, please follow the link HERE.  
 
Cystic Fibrosis Australia has been steadfast in our advocacy efforts to make this happen. We now urge all stakeholders to expedite the process, ensuring swift access to treatments for those eligible. No one should face unnecessary delays in accessing the care they deserve.

HTA PARLIAMENATARY INQUIRY

 

CFA HTA SUBMISSION

 

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 Nicki at CFA and we will submit for you – her email is nickim@cfa.org.au

 

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.


NDIS Advocacy Plan – October 2020 >

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 response to this Inquiry, authored by CFA CEO, Jo Armstrong. 

Cystic Fibrosis Australia (CFA) welcomes the Inquiry into the current cost of living crisis. Individuals with cystic fibrosis face unique financial challenges due to healthcare costs, medications, hospitalizations, and specialized treatments. The added burden of specific dietary requirements and medical equipment, coupled with rising costs of essentials like food, fuel, and rent, exacerbates their financial strain. CFA urges the Federal Government to review the living costs for those with rare diseases and chronic conditions, emphasizing the need for financial relief and support.

 

Click here to read Cystic Fibrosis Australia’s full submission to the Cost of Living Inquiry

Cystic Fibrosis Australia, in collaboration with Australian doctors across all fields of medicine, pharmacists, dentists, nurses, public health experts, teachers, mental health and social workers, advocates, guardians and parents, have put forward a letter insisting on the tobacco and vape industry to stop making vapes easily accessible to children and young people. 
 

Click here to read the entire letter.

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