Today marks the end of a month of intense activity in our campaign for NHS funding for the most advanced cystic fibrosis (CF) medicines and also the deadline for the submission of documents by the key players to the UK Parliamentary investigation into how negotiations have been conducted. So where do things stand?
Firstly, informed by the meetings and conversations we have had we understand that Vertex Pharmaceuticals, NHS England and the National Institute for Health and Care Excellence (NICE) will participate in the Health and Social Care Committee’s Inquiry and will be submitting information by today’s deadline. My colleague, Anna Evans, described what the Health and Social Care Committee inquiry is and what it could mean earlier this month. We do not expect an immediate response from the Committee on next steps, however, we will be following up with them in the next few days.
In parallel to this we know that face-to-face meetings have been taking place up to and including this week, but we have not yet had an indication of substantive progress being made.
I am deeply conscious of how frustrating and upsetting this continuing wait must be, particularly given the incredible efforts that have been made over recent weeks. The community has done an amazing job across the UK of keeping cystic fibrosis in the news and the minds of politicians (including the Prime Minister) in these strange political times.
All I can say is to reiterate what I said to the meeting of MPs last week – we are not going away and we are not going to stop until a deal is done!
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