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Cystic Fibrosis Trust

Roundtable update from David Ramsden

Wednesday was a vital day at the start of an important month in our fight to make sure people with cystic fibrosis can get their hands on life-changing new treatments. Here Trust Chief Executive David Ramsden shares his experience and looks ahead to the Parliamentary debate.

Arriving early at the Palace of Westminster, I was hoping for a good turnout to our Parliamentary Roundtable meeting. Chaired by Ian Austin, MP for Dudley North, we would be discussing what we can do, collectively, to break the deadlock and get access to Orkambi now and pave the way for increasingly transformational new medicines.

Hundreds of people have spent the past few weeks writing to their MPs asking that they attend this roundtable and then represent them at the Westminster Hall debate on Monday 19 March.

A great turnout

I had been told by MPs I have met in the past few weeks that this type of event might usually attract a handful of committed MPs and that double-figures counts as success.

So when over 40 parliamentarians, or their teams, gradually filled the large room, I understood just how strongly the message you have all been sending has landed.

We were joined by representatives of Vertex and I had Lynsey Beswick, our Public Affairs Manager by my side. Lynsey has cystic fibrosis and is just one of the people who could stand to benefit from Orkambi.

The meeting began with a passionate speech from Ian Austin, whose knowledge and commitment to the cystic fibrosis cause is inspiring. He laid down the gauntlet for the attending MPs, making it clear that these challenges are their problems to help solve and that it will take sustained action to deliver the right outcome.

I then did my best to explain the complexity of the condition, the phenomenal opportunities we have on the road to beating this disease for good, as well describing how the drug development and funding landscape seems to be both delivering and conspiring against us at the same time. I made it clear that we will not succeed without resolute political will and commitment from all sides to capitalise on this moment in the history of cystic fibrosis.

Lynsey then spoke eloquently about living with cystic fibrosis and what these drugs mean to people waiting. It is part of the cruel nature of the condition that Lynsey must be alone in that room putting the case forward from a personal perspective but, trust me, she does everyone proud. The room was still as she spoke, and MPs repeatedly thanked her for her words.

The final introductory comments were from Vertex, who explained more about the drugs they are developing and those that are licensed and should be available here in the UK.

Then the floor was opened to discussion, which continued for over an hour. The great thing about the roundtable was that it gave MPs the opportunity to learn and understand the issues more thoroughly, in advance of the Westminster Hall debate this month – and there were many detailed and thoughtful questions raised and put to Vertex, as well as ourselves – asking what more can be done to get things moving.

Vertex answered some questions about the nature of their recent new proposal to NHS England and NICE and looked to explain more about what they mean when they talk about a ‘portfolio’ deal.

So what next?

At the end of the session, the most important question was ‘what next?’. The end of the meeting was taken up with a discussion on the tactics and options we have to drive our campaign forward in Westminster and, while our focus now turns to making sure we get as many MPs as possible to represent you at the debate, we have a new group of committed and engaged parliamentarians who will help us push beyond Monday 19 March to make sure that Government commitments made at the debate are put into action. In the coming days, MPs will be collectively asking to meet the relevant minister, so that we can maintain momentum. They are brimming with ideas and tactics to make sure that the debate is not a flash in the pan, we will keep you informed of progress.

Immediately after the session broke up, I walked out of the building to see the phenomenal gang of campaigners who had braved the cold, snow and travel chaos to stand under Winston Churchill’s statue on Parliament Square. They were turning up the volume and reminding attendees that behind the statistics and pound signs are real people’s lives, and we won't let them forget that.

We will keep you informed on our campaigning pages but, for now, if you haven’t already, take the time to write personally to your local MP and tell them why it is so vital that they are your voice in the Palace of Westminster. You can find the information you need here.

Add your voice to the debate