TRIKAFTA ADVOCACY PLAN
There Is No Present Like Time
There Is No Time Like The Present
It's Time For Trikafta
TRIKAFTA FOR 6-11's
Listen to our CEO, Jo Armstrong talking to Ray Hadley on 2GB
Miracle drug for sick kids delayed after Department of Health talks break down - 2GB - Sydney's premier news and talk radio station
In December 2022 we celebrated the news that the PBAC have recommended Trikafta for 6–11-year old’s with at least on F508del mutation. However, it is yet to be subsided on the Pharmaceutical Benefits Scheme (PBS), so the 500 children who will benefit are left waiting for this critical medication. CFA is advocating that Trikafta is listed on the PBS immediately.
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 >
A life-changing treatment for cystic fibrosis was added to the pharmaceutical benefit scheme last year, but the subsidy is only for those aged over 12, meaning families with young children still don't have affordable access to it.
MAFS bride hoping 'miracle' drug will give her a happy ever after .... READ HERE >
TRIKAFTA APPROVAL - WATCH THE NEWS HERE >
CLICK HERE> to read more about Jess Ragusa and Bradley Dryburgh
Jess Ragusa, Jess's Mother Kellie, Jo Armstrong, Greg Hunt MP, Mitch Messer
Watch Jo Armstrong, CFA CEO, Jess Ragusa and Nick Cummins speak on 'The Project' HERE >
Watch Jo Armstrong, CEO Cystic Fibrosis Australia, being intereviewed on the Chris Kenny Show on Sky News Australia for a discussion about Trikafta HERE>
Listen to Jess: Jess has been self-funding Trikfata now for 4 months and seen a 24% difference in her lung function. Help her have a future with her husband and family. CLICK HERE> (passcode CFA2022)
Open Letter to the CF Community from Vertex - 27 March 2022 >
Open Letter to the CF Community from CFA - 3 March 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.” Open Letter to the CF Community from Vertex - 1 February 2022 >
Open Letter to Vertex from CFA - February 2022>
Open Letter to CF Community from Vertex - Vertex October 2021>
COMMUNIQUE'S
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 >
MEDIA RELEASES
20 August 2021 - The Domino Effect
26 April 2021 - Patients V’s Patience – Never the Twain Shall Meet >
23 April 2021 - A Tough Pill to Swallow … ACCESS DEFERRED >
12 April 2021 - The CF Community Deserves Compassionate Health Equity >
23 December 2020 - On The Agenda At Last >
16 December 2020 - Talk To Those Who Know >
5 November 2020 - Milestones that must be met >
4 March 2021 - Microcosm >Community Letter to Vertex - ACCESS DEFERRED >
Community Letter to Vertex >
Health Technology Assessment (HTA) Submission by CFA >
ICER Modulator Treatments for Cystic Fibrosis: Effectiveness and Value >
SUMMARY OF RESUBMISSION PATHWAYS >
Fact Sheet - Stage 2 PBS Process Improvements >
VERTEX PRESS RELEASES
PUBLIC SUMMARY DOCUMENT - March 2021 PBAC Meeting with May 2021 and July 2021 Addendum Click here >
PRESS RELEASE > Vertex to present long-term data demonstrating significant Benefits of treatment with CFTR Modulators at North American Cystic Fibrosis Conference (NACFC) (19/10/21)
PRESS RELEASE > Patients up ante in compassionate access push (12/04/2021)
PRESS RELEASE > Vertex receives Australian TGA approval for TRIKAFTA® (elexacaftor/tezacaftor/ivacaftor and ivacaftor) to treat people with cystic fibrosis ages 12 years and older who have at least one F508del mutation (25/03/2021)
CFA PRESS RELEASES
Cystic fibrosis medicine added to Pharmac's options for investment list > (27/10/21)
PBAC
PBAC Consumer Comments >
PBAC Consumer Portal - CLICK HERE >
Consumer Comments Portal closes on 10 February 2021
Letter to PBAC >
Pharamceutical Benefits Advisory Committee - response letter to CFA >
Fast Facts >
ICER Findings >
Key Messages >
Hero Statements and Slogans >
Creative Headlines and Phrases >
Hashtags >
Case Study Form >
LETTERS TO MEMBERS OF PARLIAMENT & SENATORS
Community Letter to Minister Greg Hunt - April 2021 >
Community Letter to MP's and Senators - April 2021 >
To contact a Member of Parliament or Senator please CLICK HERE to find a list of their details.
Letter to MP's and Senators - March 2021 >
New Year Letter to Politicians >
Letter to Politicians from Community >
8 December 2020 -
Christmas letter to Members & Senators from CFA >
Christmas Letter to Politicians from Community >
To contact a Member of Parliament or Senator please CLICK HERE to find a list of their details.