Updates
Trikafta for 6-11s
27th July 2022
Trikafta for children aged 6-11 is on the November PBAC agenda!
This is great news for the approx. 500 children waiting for Trikafta around Australia.
Our children with Cystic Fibrosis might look healthy now but inside they are already fighting an immense battle. Together we can let the PBAC know just how important it is that these children and families hear good news in 2022!
You can help by submitting comments in support by September 21.
https://ohta-consultations.health.gov.au/.../online.../
Personal stories, experiences with Trikafta and impact statements from those with children aged 6-11 awaiting Trikafta are the most powerful.
#YesToTrikafta #EarlyAccessSavesLives
Trikafta on the PBS
1st April 2022
~ Trikafta is on the PBS as of today!! ~
This wouldn’t have happened without the amazing scientists at Vertex. Funding from the Cystic Fibrosis Foundation helped Vertex Pharmaceuticals to develop the first CFTR modulator, Kalydeco, by testing 228,000 compounds! Since then Orkambi, Symdeko and Trikafta have been developed, meaning there is a highly effective medication that treats the underlying cause for 90% of those with CF.
Here’s to the science that’s saving and extending lives!
We’re aware that some will not be eligible for Trikafta or may not be able to continue taking it; the image below shows the different areas that are being researched, with the aim to help all people with CF #NoOneLeftBehind
If you’d like to read more about the research head here: https://apps.cff.org/trials/pipeline/
PBAC Outcome December
31st January 2022
~ It’s a yes!!! But negotiations are still needed ~
The PBAC have given a positive recommendation for Trikafta for those aged 12+ who have at least one F508del. This is an extremely positive and vital step as we move closer to being able to access Trikafta!!
This now moves to the next step, where per Vertex, further negotiations are needed:
“While there is still considerable work to do by all stakeholders in order to reach an agreement given the conditions related to the recommendation set out by the PBAC, we are committed to doing all we can to move the process along and have already initiated the next step.”
The Health Minister has said these processes will move at 'lightning speed,' and we’re holding you to that, as it becomes critical that Trikafta is included in the March Budget and finalised before the election.
We need Greg Hunt MP & Vertex Pharmaceuticals to commit to doing everything possible to ensure this happens.
CF patients have waited long enough, we can’t hold our breath forever.
PBAC Outcome July
20th August 2021
We’re pleased to see a positive recommendation from the PBAC for Trikafta for those with a minimal function mutation & F508del as there is not yet a modulator available to them. We hope that Vertex agrees to this part of the recommendation and that patients will have access without delay.
HOWEVER
The majority, 1800 people with CF, have again been let down by our Government not prioritising access to groundbreaking medications. For most of us, though we do have a modulator, Trikafta is 3-5x more effective. We also know that the benefits have been clearly established, based on the fact that they’ve given approval to a sub-group right now.
We await comment from Vertex as to the rest of the information in the attached outcome around the submission. We’re waiting on confirmation but we believe the next discussions won’t happen until the November PBAC meeting.
What is clear is that our medication funding process needs to change… we don’t have time for these protracted negotiations to save on budget or to go through approvals for every variation of CF. We literally don’t live that long.
To show support and to help illustrate the burden of CF, we’d like you to post photos in the comments of something related to your medications. Could be you taking them or showing your cupboard full of the different meds it takes to hold CF at bay.
PBAC March Summary Document
16th July 2021
The Public Summary Document from the March PBAC meeting has been released today.
There is a lot of complex detail within the document, and it's disappointing that even with a second meeting in May, the PBAC and Vertex were still not able to reach an agreement.
The drawn out negotiations and the subsequent delay to life-saving Trikafta shows exactly why we a system like the German model - where access is provided with negotiations to follow. Germany has now had access for almost a year. The US almost 2 years.
There's 19 countries that have made it happen - the unwell Australians desperately need a yes on August 20. Lives can’t be saved if we can’t afford Trikafta.
PBAC Outcome May
18th June 2021
Confirmation that Trikafta was deferred for the second time at the May Intracycle PBAC meeting.
Price and total estimated cost seem to be the main barriers. The PBAC agreed to increase the budget by 80% (likely due to the PBAC's reappraisal of patient numbers), but it was deferred as it was not aligned with the PBAC's March advice due to altered pricing and financial estimates.
It's hard to make sense of this and we've been here before, with contradictory statements and drawn out negotiations from both sides. Kalydeco took 4 PBAC meetings & 2.5 years and Orkambi took 4 PBAC meetings & 3.5 years - unfortunately CF does not wait and people are getting sicker whilst waiting for life-changing medications.
15 countries have found a way to provide Trikafta - we need our decision makers to negotiate quickly and find a way to get us fast access. We need our Health Minister to step in and speed up the negotiations and we need Vertex to put lives before profit. Lives can’t be saved if we can’t afford Trikafta.