CF Lighter Trikafta Composite
CF Lighter Trikafta Composite
1 Aug
Advocacy

Trikafta - positive news but progress still painfully slow

1 August 2022

Today PHARMAC released an excerpt from the Respiratory Advisory Committee (RAC) record of their April 2022 meeting, where Trikafta was discussed. The Committee had previously reviewed Trikafta in August 2021 and recommended a high priority for funding for all those six years and over who would benefit.

We are very happy to report that this team of respiratory experts who understand the complexity of life with CF, has restated their original recommendation that Trikafta is a high priority for funding for all those six years and over who would benefit, reinforcing Trikafta’s “significant and consistent clinical benefit.”  

In November 2021, the Pharmacology and Therapeutics Committee (PTAC) considered Trikafta, and disappointingly recommended a medium priority for funding for those aged 12 and old and deferred a decision for those aged 6-11 years. This left our CF community reeling and clutching on to hope.

As part of RAC’s April meeting, they assessed additional information received from Vertex, a letter from two CF clinicians, and a letter from CFNZ in response to PTAC’s November recommendations, and addressed specific issues raised by PTAC.

The record from PTAC’s May 2022 meeting is expected to be released this month – so let’s take this win and hold on to the hope that the outcome of PTAC will be our next one. CFNZ is hopeful that the Respiratory Advisory Committee has finally been heard and that Trikafta will be fairly prioritised and funded based on the advice of the experts.

CFNZ thanks the Respiratory Advisory Committee for its comprehensive and positive assessment and recommendation, and for its recognition of the substantial benefits Trikafta would bring to the CF community in Aotearoa.

 

READ THE RESPIRATORY ADVISORY COMMITTEE EXCERPT HERE

READ THE FULL CFNZ MEDIA RELEASE HERE

READ THE FULL VERTEX STATEMENT HERE

 

Next steps

- The full record of the Respiratory Advisory Committee meeting should be released in a few weeks. CFNZ understands that RAC also considered expansion of access to Kalydeco but we have yet to be advised of the outcome.

- Pharmac will release the record of PTAC's May 2022 consideration of Trikafta together with the Technology Assessment Report (TAR). The TAR contains Pharmac's detailed analysis of a new medicine and is used to determine cost effectiveness of the medicines that Pharmac is asked to fund. Release of TAR will illustrate how Pharmac has assessed the benefits of Trikafta.

- CFNZ understands that the release of the RAC, PTAC and TAR will enable:

  • Vertex to progress its commercial proposal to Pharmac
  • Pharmac to undertake a further ranking of Trikafta, potentially in September.

CFNZ will continue to do all it can to urge Vertex and Pharmac to agree a fair and reasonable price for Trikafta for all those who would benefit. We will provide another update as soon as any further information is available.