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Cystic Fibrosis Trust

Is this really the end of the road?

It has been a tough week for the cystic fibrosis community. There has been a flurry of intense activity, followed by numerous letters and press releases that have led many to the – understandable – conclusion that this is the end of the road for negotiations. Trust Chief Executive David Ramsden shares his assessment of where things stand.

Firstly, it is worth noting we are not in the room when the critical commercial conversations take place. However, this week we have had direct briefings from Vertex and NHS England, which are inevitably different in tone, but also more alarmingly at times describe very different realities.

What has come through in those discussions though is that this appears to be a critical stage in the negotiations and the intensification of the activity and statements this week should be seen in that light.  

As this process continues, I am concerned that both parties are using press releases in the public domain without fully appreciating the impact that this may have for people with cystic fibrosis and their families, and the very real consequences of continued delays. These negotiations should be taking place in the room, not in public and certainly not by using the lives and emotions of the cystic fibrosis community in place of proper, serious discussion.

There are no winners here and it is not helpful for us to start apportioning blame for the current position, but when so little progress has been made over such a long period, calls to ‘urgency’ ring quite hollow. There have been long periods where neither party seemed to take any discernible action to move things forward, and that has to change.

What we should cling to at this point is that neither side has given up, and we believe strongly that you, the cystic fibrosis community, have had a direct impact in the impetus around these negotiations and will continue to do so. While my optimism doesn’t extend to a deal being imminent, neither do I believe that these talks have irrevocably broken down.

Our focus at the Trust remains on working with all sides to ensure a deal gets done. We are continuing to pressure both parties and ensure they know we won’t stop until we get there.