Access to Medicines: Update 15 June 2018

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At the end of a busy week of activity in the fight to stop the clock on cystic fibrosis, and on the eve of another, our Chief Executive, David Ramsden, shares his thoughts on where things stand.

It’s been a packed week. On Tuesday Vertex and NHS England had a further meeting to discuss reimbursement of their portfolio of cystic fibrosis drugs. On Wednesday, shortly after Vertex released their statement on the meeting, we had a briefing call with them, and on Thursday I went with our Chair, George Jenkins, and Trustee, David Turner, to meet with the Specialist Commissioning Team at NHS England.

Both parties to the formal discussions are bound by confidentiality so there is rightly a limit about what they can say to us, however, I think we can pick up general themes. 

The good news is that meetings are taking place and more are planned. We also understand that the meetings are focused on a portfolio of drugs and not just Orkambi, which is vital if we are to avoid having to go through this process repeatedly over the coming years.

Of more concern (as we are not in the room) is knowing how meaningful these discussions truly are, as neither party seems deeply confident that an agreement is imminent. 

Similar concerns were raised in the Scottish Parliament this week during an emotional debate on a motion by Maurice Corry, MSP, to make Orkambi available to people with CF north of the border. It’s vital that the relevant parties get in a room together and undertake meaningful discussions to find a solution.

At the start of the year I called on Vertex to make a “bold offer” and their subsequent actions and the dialogue that started have created an opportunity to get a deal. However, at the end of this week I want to reiterate that call to move towards a settlement. My fear is if things don’t move quickly now the chance to get this done will pass and the wait will go on for the thousands of people with CF who could benefit.

We cannot allow this to happen. Far too much time has passed already, damage been done and lives lost. 

As we move into CF Week, the campaigning activity planned across the community is vital to maintain pressure on all sides to get this deal done now.

Find out more about our campaign for access to medicines.

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