Members of the CF New Frontiers Committee (CFNFC) engaged in a meeting with representatives from Vertex Pharmaceuticals on 16 September 2020.
Representing South Africa on a national level, the CFNFC attendees consisted of doctors specializing in paediatric and adult treatment of CF, the SACFA Chairman, as well as the CFNFC Chairman.
The meeting was of an introductory nature and CFNFC attendees :
- Conveyed our interest in obtaining Vertex treatment for all CF patients in South Africa;
- Provided background regarding the current South African economic, healthcare and regulatory environment, in order to give Vertex a better understanding of our plight as the collective CF community;
- Outlined progress on our comprehensive CF registry; and
- Explained our existing infrastructure for performing clinical trials.
We are looking forward to engaging further with Vertex and other stakeholders, in the upcoming months, to forge strong relationships and work together, so that we can achieve every CF family’s goal – affordable and life-changing treatment.
Vertex were not able to commit to a timeline for access to Trikafta, but indicated that it will be a slow process.