We advocate on behalf of our members to gain better access to services, obtain information or resources.
On a larger scale we have been involved in several national campaigns to increase the rights of all people with cystic fibrosis.
Cystic Fibrosis Australia (CFA) is currently working in conjunction with State and Territory CF organisations advocating on behalf of the CF Community to the Federal Government raising awareness about latest cystic fibrosis treatment called Orkambi.
14th December 2016 - Letter to my media and local member. For more...
We want you to get involved! Please help us by:
- Sharing your story - with your local member, local media, or email firstname.lastname@example.org and tell us directly. We can then contact the media on your behalf.
- Lolly Jar awareness - Send us an email to email@example.com with your name, contact details and location, local newspaper name, favourite radio station announcer, local MP or Senator name and electorate area and we will send them all a ‘lolly jar’ full of sweets.
We will ask these community leaders to guess how many lollies are in the jar. The answer will be ‘a member of your community knows as they take this number of tablets every day’.
Would you like to hear about the arduous nature of CF?
CFA will then provide contact details for you to tell your story.
- Join us as we rally outside Parliament house on 7 February 2017. More information>
PBAC Announcement for Kalydeco and Orkambi
Let your Local Members or Senator, local newspaper, TV and radio stations know why access to these drugs is a must.
· Australians with CF need access to life-changing treatments to extend and improve life
· Kalydeco and Orkambi tackle the disease rather than just CF symptoms
· Clinical trials showed that…
- Three year outcomes for Kalydeco … reduction in lung damage 47% less than general CF cohort
- 96 week trial outcomes … Orkambi showed a reduction in lung damage 40% less than general CF cohort
- LUNG FUNCTION was preserved and further decline was halted, relative FEV1 increased by 4.8% and a sustained improvement was evident…
- EXACERBATIONS reduced, as did hospitalisations and antibiotic use.
- Reduced Exacerbations by 39% Hospitalisations by 61% Antibiotic use reduced by 56%
- NUTRITION improved, as did BMI and diabetes is less likely or less severe symptoms will be experienced.
- MENTAL HEALTH and QUALITY OF LIFE improved. Social inclusion, employment and education participation increase. Personal and family stress was reduced resulting in less depression/anxiety for patients, parents and support networks
Messages from the CEO
- CEO Update - Think Tank applications now open - 18 April 2017.
- CEO Update - CFA CEO takes on Canberra, 31 March 2017.
- CEO Update - Protest Update, 10 February 2017
How did the protest go? Hear from Nettie her thoughts and next steps. Read more>
- CEO Update - The CF Community will leave no one behind, 8 February 2017
We are celebrating the approval of Kalydeco for 2-5year old yesterday but we will not be leaving the 1,000+ people who need Orkambi behind. Read more>
- CEO Update - For 30 little Australians Cystic Fibrosis Australia Celebrates, 7 February 2017
Today it was confirmed by Australia's Health Minister Greg Hunt that Kalydeco will be made available on the PBS. Read more>
- CEO Update - Aussie Kids are Kalydeco Kids, 5 February 2017
We wake up to great news this morning for Aussie 2-5yo kids. Read more>
- CEO Update - Final Rally details, 3 February 2017
The latest from CEO Nettie Burke with all you need to know about the CF Protest next Tuesday. Read more>
- CEO Update - Infection Control at the Canberra Rally, 19 January 2017
We have many people attending the rally in Canberra so here is what you need to know about preventing cross infection. Read more>
- CEO Update - Canberra Rally, 16 January 2017
Here is everything you need to know about the upcoming rally! Read more>
- CEO Update - Christmas Message, 20 December 2016
What a year 2016 has been. CFA reflects on our high impact moments and achievements. Read more>
- CEO Update - CFA Patron Awards, 20 December 2016
Recently, Cystic Fibrosis Australia hosted the Governor General's Patron's Awards. The nine winners of the inaugural awards were announced at the ceremony at Admiralty House in Sydney. Read more>
- CEO Update - CF Community Head to Canberra, 19 December 2016
It is now time to launch CFA's next advocacy event and I hope many of the CF community will be able to be a part of it. We are planning a public protest on the lawns of Parliament House. Read more>
- CEO Update - PBAC Announcement, 16 December 2016
The Pharmaceutical Benefits Advisory Committee (PBAC) has announced two rulings today and there is no good news for the cystic fibrosis community. Read more>
- CEO Update - NA CF Conference, 15 December 2016
For the second year in a row, CEO Nettie Burtke attended the North American Cystic Fibrosis Conference. Read more>
- CEO Update - Kalydeco and Orkambi alert, 13 December 2016
Once again we are holding our breath this week as we wait for a ruling from the PBAC regarding Kalydeco and Orkambi. Read more>
- CEO Update - Innovation Research Grant, 7 December 2016
CFA Is pleased to announce the 2017 Innovation Research Award for post-doctoral scientists working in cystic fibrosis research. Read more>
- CEO Update - Mycobacterium Abcessus, 11 November 2016
Today a paper was published in Science reporting the findings of a global study of Mycobacterium Abcessus in CF. Read more>
- CEO Update - Medical Research Future Fund, 10 November 2016
The Medical Research Future Fund have announced the Australian Medical Research and Innovation priorities 2016-18. Read more>
- CEO Update - CF Lives Matters, 8 Novemeber 2016
Today CFA launched a new information service for the CF community. Read more>
- CEO Update - Kalydeco and the PBAC, 28 September 2016
On the 5th November, the PBAC will meet to decide wether Kalydeco is approved for reimbursement for 2-5 year old children. Read more>
- CEO Update - Orkambi and the PBAC, 5 September 2016
There are 1,000+ Australians who would benefit from Orkambi being approved for reimbursement at the PBAC meeting in November. Read more>
- CEO Update - My story, 25 August 2016
CFA Plans to create a gallery of great 'My Story' videos and compelling arguments for our politcians to use when lobbying for greater health resources. Read more>
- CEO Update - 2017 Cystic Fibrosis Conference, 17 August 2016
In 12 months time, the 12th Australasian Cystic Fibrosis Conference will be held in Melbourne. Read more>
- CEO Update - The Kaleidoscope Project, 11 August 2016
Now is the chance to have your say in this national initiative designed to bring together children with chronic disease. Read more>
- CEO Update on Orkambi, 17 May 2016
The PBAC ruling rejecting the reimbursement of Orkambi and the lack of support and interest in healthcare in the Federal Government’s budget have caused a great deal of disappointment and dissatisfaction in the cystic fibrosis community. After recent let downs … what do we do now? To see how you can help, click here.
- CEO Update, 27 April 2016
Our health system is ailing and placing Australians at risk. Cystic Fibrosis Australia is calling on the community to find their voice and shout out … “This is not acceptable”. Read the full Communique from CFA CEO Nettie Burke.
You can help CFA create awareness by contacting your Federal Senator or MP. Below is a sample letter and the most recent list of Senators and Federal Members that will assist you.
Senators and Federal Members.
- PBAC Announcement 22 April 2016
Sadly there are many disappointed Australians today as we digest the news that Orkambi, the latest new generation drug for cystic fibrosis, will not be recommended for reimbursement by the Pharmaceutical Benefits Advisory Committee (PBAC) for Australians with cystic fibrosis (CF). For more...
Cystic Fibrosis CEO, Nettie Burke appeared in an SBS Interview on Friday, Breakthrough cystic fibrosis drug rejected by Australian authorities.
TGA approves extended use for KALYDECO
The Therapeutic Goods Administration (TGA) has approved expanded use of KALYDECO for people with cystic fibrosis (CF) ages 6 and older with the R117H mutation.
The TGA approval is based on data from a Phase 3 randomised, double-blind study of 69 people with CF ages 6 and older who had the R117H mutation.
Vertex will now prepare a submission for the Pharmaceutical Benefits Scheme, to provide access to approximately 100 Australian patients with this mutation.
* ORKAMBI approved by TGA
The last few days have been very positive for the cystic fibrosis community with respect to the drug Orkambi for people aged 12 years and older. Orkambi is the first medicine to treat the underlying cause of cystic fibrosis for people with two copies of the F508del gene mutation. For the lastest communique from CFA CEO, click here
- CEO Update, 29 January 2016
Canadians over the age of 12 with two copies of the F508del mutation are celebrating this week the approval of Orkambi byHealth Canada. Cystic Fibrosis Australia and the cystic fibrosis community are eagerly awaiting the impending approval of Orkambi by the TGA in March 2016. Read the latest from CFA CEO Nettie Burke>
- CEO Update, 18th December 2015
CFA is reaching out to the CF Comunity to help with our "Last Minute Christmas Wish..." CEO, Nettie Burke has this request
We have drafted another letter to the Politicians and Media which you can download and sign prior to sending:
Letter for the Politicians
Letter to the Media
- CEO Update, 3rd December 2015
CFA has prepared the following letters to assist the CF community spread awareness about the Orkambi Advocacy Campaign. We have drafted a letter to Politicians and media which you can download and sign prior to sending. The list of Parliamentary members is above.
Letter for the Politicians
Letter to the Media
If you have any questions, please dont hesitate to contact CFA via email or phone (02) 9889 5171
Please see below for the latest updates on the advocacy for ORKAMBI.
Social Media Assets for the Oh Oh Oh Orkambi Advocacy:
To download the image, click on the links below:
Facebook Profile Option 1
Facebook Profile Option 2
Facebook Profile Option 3
Facebook Banner Option 1
Facebook Banner Option 2
Email signature Option 1
Email Signature Option 2
Dont forget to link your images to http://www.cysticfibrosis.org.au/cfa/advocacy/#Orkambi
Wednesday 11th November - Update from CFA CEO
Vertex has submitted Orkambi to the TGA and PBAC and it is hoped that following consumer input early in the new year and potentially some stakeholder meetings, approval will be granted in March 2016.
Orkambi has had mixed trial results for people with two F508del CFTR mutations however it is vital to note that many people saw a decrease in exacerbations, hospitalizations and lung damage and importantly in many cases people's quality of life improved.
Vertex has a compassionate access program for people on the Orkambi trial and others with severe disease. If you are interested in learning more about the Orkambi compassionate access program speak to your CF clinician.
Cystic Fibrosis Australia will continue its government advocacy and since the creation of CF CAN, our new consumer advocacy network, we now have well informed supporters to further enhance our message.
Friday 3rd July 2015 - Announcement from Cystic Fibrosis Australia
Cystic Fibrosis Australia can confirm the U.S. Food and Drug Administration (FDA) has approved Orkambi, the combination cystic fibrosis (CF) drug containing 400mg of lumacaftor and 250mg of ivacaftor (daily dose) for people who are 12 years of age and living with the F508del homozygous gene mutation.
Cystic Fibrosis Australia supports this decision and plans to continue the momentum of the Orkambi approval campaign here in Australia.
Two large phase-three clinical trials were conducted worldwide and 10 trial sites were located in Australia. FEV1 improvements were observed from Day 15, sustained throughout the 24-week trial and to 48 weeks in the open label follow up period. The mean improvement in lung function was approximately 3% though pulmonary exacerbations for patients on the drug combination were 39% less than the placebo group.
Importantly the drug combination not only initially improved FEV1. Orkambi trial participants also experienced weight gain, a reduction in hospitalisations and a reduction in the use of additional antibiotics.
The Vertex drug combination of ivacaftor (Kalydeco), which is designed to enhance the function of the CFTR protein once it reaches the cell surface and lumacaftor, which binds the defective CFTR and enables it to be transported to the surface of the cell, will improve the lives of many people living with CF.
Approximately 1,500 Australians have the F508del homozygous gene mutation and if approved by the TGA and PABC, Orkambi will be available to about 1000 of these people who are aged 12+ in 2016. Vertex is planning on using a parallel approval process by engaging both the TGA and PBAC simultaneously.
CFA is committed to maximising every opportunity to get the voice of the CF community heard and will be working with CF clinicians, and Australian government regulatory agencies to improve access to treatments for patients with CF. Cystic Fibrosis Australia will be tracking the progress of Orkambi in Australia and overseas and regular updates will be available at cysticfibrosis.org.au/cfa/orkambi
Friday 3rd July 2015 - Orkambi Key Facts
- The drug combination components – Ivacaftor and Lumacaftor - have been in development for more than 15 years
- Two Phase Three Clinical trials were held worldwide in 100 CF centres worldwide which included 10 trial sites located in Australia
- The U.S. Food and Drug Administration (FDA) approved Orkambi for people with cystic fibrosis (CF) who are over the age of 12 years living with F508del homozygous gene mutation. This was appoved in the US on 02 July 2015.
- Registration is being sought in Europe through the EMA and an announcement is expected late 2015_Orkambi has been submitted to the TGA for registration and an announcement is expected in the first quarter of 2016
- Vertex’s TGA submission relates to the approval of Orkambi, for people with cystic fibrosis (CF) who are over the age of 12 years living with F508del homozygous gene mutation
- Trial data shows that FEV1 improvements in many participants were observed from Day 15 and sustained throughout the 24-week trial
- The mean improvement in lung function was 3% though pulmonary exacerbations for patients on the drug combination were 39% less than the placebo group
- Many trial participants also experienced weight gain
- Within the trial group a reduction in hospitalisation and a reduction in the use of additional antibiotics were identified
- Approximately 1500 Australians have the F508del homozygous gene mutation and if approved by the TGA, Orkambi will be available to approximately 1000 patients 12 years and over in 2016.
- Vertex is hoping to using a parallel approval process by engaging both the TGA and PBAC simultaneously
- It is important to note that Orkambi’s impact has been variable, according to some trial participants, who did not identify any noticeable changes to their CF symptoms.
- Cystic Fibrosis Australia supports the FDA’s decision and plans to continue the momentum of the Orkambi approval campaign here in Australia
- Updates will be available on the Cystic Fibrosis Australia website – go to cysticfibrosis.org.au/cfa/orkambi
Thursday 7th May 2015 - Combination Lumacaftor-Ivacaftor update
Please click here for the latest update from CFA on the Combination Lumacaftor-Ivacaftor medicine
Become an Advocate with CFCAN
Cystic Fibrosis Australia has recently introduced a Consumer Advocacy Network called CF CAN.
CF CAN incorporates representatives from Cystic Fibrosis Australia, State and Territory CF organisations and informed and passionate members from the CF community. Led by CFA CEO, Nettie Burke CF CAN will be recognised as a subject matter expert and is tasked with improving communication and providing a flow of valuable information to media and government.
CF CAN will promote a schedule of agreed advocacy topics which will educate the wider community and supporters about cystic fibrosis issues. This team of devoted advocates will have an active voice in their community and will support national advocacy principals using intelligent and respectful communication.
In conjunction with Cystic Fibrosis Australia, CF CAN advocates will communicate CF CAN advocacy messages publicly to a variety of target audiences. They will help support CFA’s vision, key messages, strategies and objectives. Collectively they share a passion for the cause, values and help represent the priorities for the CF community.
Through the development of CF CAN, CFA aims to increase community knowledge about cystic fibrosis. Increased effective communication with key markets including government and the media will assist in the development of an ongoing and mutually trusting relationship. This will result in a greater visibility for issues affecting people with cystic fibrosis and current research and treatments as well as encouraging greater support from the community and corporate sector to generate funds and raise profile.
CF CAN recently provided feedback to Cystic Fibrosis Australia on a range of advocacy topics. Based on unanimous support, we are pleased to announce that Cystic Fibrosis Australia and CF CAN advocacy priorities for 2016 will be:
- Drug affordability and availability – Australians with cystic fibrosis must have access to the best medical and allied health services, CF treatments and drugs.
- Mental Health - All Australian's with cystic fibrosis and their support networks must have access to affordable and disease appropriate mental health support.
- Health Care Card - Australian's with CF must have access to the Health Care Card for life.
Cystic Fibrosis Australia is looking forward to having these listed on the Federal Agenda.
For more information on CF CAN, please email firstname.lastname@example.org
Cystic Fibrosis community with gating (class 111) mutations can now breathe easy on news of Government subsidy
Please click here for more details
Vertex Kalydeco Gating Announcement - 1st December 2014
Cystic Fibrosis Australia welcomes the news and is relieved that Kalydeco has now been approved for subsidy on the PBS for all Australians with the G551D gene.
Click here to read Minister Dutton's Statement
Click here to read the Statement from Vertex
Click here to read CFA's Statement
Kalydeco Access - Questions and Answers
Please click here for information regarding Kalydeco access.
Kalydeco Update (14th October 2014)
Please click here for more details
Vertex Meeting Update (3 September 2014)
CFA would like to report that the meeting today with Vertex was postponed, however we are very pleased to advise that the postponement was due to Vertex attending a meeting with the DOH to submit an updated proposal for the listing of Kalydeco (ivacaftor) on the PBS.
Please click here for more details.
Kalydeco Update (28 August 2014)
As reported last week CFA will be hosting an important meeting with Vertex on the 3rd September to strongly advocate for a timely response to the Summary Statement from the meeting held on the 31st July with the DOH, Australian CF Physicians and CFA regarding PBS subsidy of Kalydeco.
Please click here for more details.
CFA secures meeting with Vertex
CFA are pleased to advise that a meeting with Vertex has now been agreed for the 3rd September to discuss the new criteria proposed in the Summary Statement document from the meeting held on the 31st July
Please click here for more details
Department of Health Meeting
Vertex Response to DOH Summary Statement - Please click here for Vertex response
A stakeholder meeting was held on the 31st of July 2014 to discuss the Pharmaceuticals Benefits Scheme (PBS) listing of Ivacaftor (Kalydeco) for treatment of cystic fibrosis in patients aged six years and older who have the G551D mutation in the CFTR (cystic fibrosis transmembrane conductance regulator) gene.
The meetings outcome statement reflects the pay for performance framework recommended by the Pharmaceutical Benefits Advisory Committee (PBAC) in March 2014, under which all eligible patients could be treated with PBS-subsidised Ivacaftor but the price paid by the Government varies depending on the magnitude of the benefit gained by patients, in recognotion that not all patients respond equally to treatment. Should the pay for performance framework not be successfully negotiated with the sponsor of the medicine, the criteria for response could be used as stopping rules in a manner similar to many other PBS listings.
The detailed statement is below.
Department of Health Statement Summary 31 July 2014
CFA and the CF Federation is acutely aware of the need for this new treatment to be made available and recognise the concern that the delay in the PBS listing is causing our community. We continue to advocate strongly for the CF community on this issue.
CFA meeting wih Department of Health
Bronchitol Shortlisted For Prestigious Orphan Drug Award - 7th July 2014
PBAC Public Summary Document (re Kalydeco) - 4th July 2014
Vertex Statement PBAC Public Summary Document - 4th July 2014
Community Update - 24th June 2014
Media from 65 Roses Events in Canberra - 28th May 2014
Kalydeco CFA Statement Oct 2014
PharmaDispatch - Co-pays and listings the focus of Senate Estimates - 2 June 2014
Hobart Mercury - Mum's Plea For Special Drug to Help Little Leena - 30 May 2014
Canberra Times - Push to Subsidise Life-saving Drug - 29th May 2014
Border Mail Albury - Listing Of Drug Not My Job - 29 May 2014
Pharma Dispatch - We Will Respond In Kind, says Dutton - 29 May 2014
West Australian Perth - Toddler's Life Hangs In the Balance Over Drug - 28th May 2014
AAP - Break Impasse and fund CF Drug, govt urged - 28 May 2014
Yahoo - Toddlers Life In Balance Over Drug - 28 May 2014
2SM - Sydney Breakfast, Grant Goldman & 6PR Perth Newsreader - 28 May
Pharma In Focus - Patient Pressure Builds on PBAC - 28 May 2014
Pharma Dispatch - 40 Years of Funding - 28 May 2014
Pharmacy Daily - PBS Call for Kalydeco - 28 May 2014
SMH - Dutton wont intervene in CF Drug Listing - 27 May 2014
Melville Times Perth - Fighting to Improve Odds - 27th May 2014
Media Release - 65 Roses Day Event - distributed on 26 May 2014
Media Release - Alternative Criterion with Department - 20th May 2014
Press Release - Vertex developing an alternative - 5th May 2014
Kalydeco and PBAC Update - 29th April 2014
Kalydeco and PBAC Update - 28th April 2014
Kalydeco and PBAC Update - 23rd April 2014
Kalydeco - yes or no? ABC Radio Brisbane - 14th April 2014
Patients Want Intervention on Kalydeco - 13 March 2014
Kalydeco Campaign Continues - 18th February 2014
Give the Breath of Life - 11 February 2014
Offical Media Release - Breath of relief as Kalydeco receives green light - 20th December 2013
Article 12 - Letter to the CF Community - PBAC Recommends Subsidy for Kalydeco - 20th December 2013
Official Media Release - Breath of relief as Kalydeco receives green light - 20th December 2013
Article 11 - Important next steps for Kalydeco - 4th December 2013
Article 10 - Kalydeco and PBAC - 25th October 2013
Open letter to the CF Community - 3 September 2013
Article 9 - Kalydeco 23 August 2013 (Update on PBAC deferral of Kalydeco)
Article 8 - Kalydeco 15 August 2013 (PBAC deferral disappointing, but not the end of the road)
Article 7 - Kalydeco 10 July 2013
Article 6 - Kalydeco 8 May 2013
Article 5 - Kalydeco October 2012
Article 4 - Kalydeco June 2012
Article 3 - Kalydeco May 2012
Article 2 - Kalydeco April 2012
Article 1 - Kalydeco April 2012