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.
Trikafta Listed For 6 to 11yrs:
Trikafta Listing Delayed for 6 to 11yr olds:
PBAC Recommends Trikafta for 6 to 11yrs:
Trikafta Approved for 12yrs and over:
Trikafta Listing Delayed for 12yrs and over:
“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)
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
HTA PARLIAMENATARY INQUIRY
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.
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.
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.
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
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.
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 firstname.lastname@example.org and we will get back to you with a solution.
You can also contact the Government Inquiry Secretariat on 02 6277 4145 or Health.email@example.com . There are three ways to deliver your submission…
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.