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Monday’s debate – what to expect

Ahead of Monday’s debate in Parliament on access to Orkambi, Paul Scully MP, Kate Anderson from the petitions committee and Alasdair Mackenzie, Community Outreach and Engagement Manager at Parliament, came into Cystic Fibrosis Trust HQ to get us up to speed. Oli Lewington, Director of Engagement at the Trust, sets out what went on at the meeting and what happens next.

What to expect from the debate

Monday’s debate starts at 4.30pm (you’ll be able to watch it here) and will be chaired by Paul Scully, MP for Sutton and Cheam. The debate was triggered by a petition set up by Gemma Weir and Michelle Frank, whose young daughters both have CF and could benefit from Orkambi. You, the incredible CF community, rallied more than 114,000 signatures to that petition, giving us a chance for the whole community’s voice to be heard in the palace of Westminster.

Paul, Kate and Alasdair came into Trust HQ on Tuesday with two goals in mind. The first was to make sure that Paul, who will be leading the debate, was well briefed on CF, its impact on everyone affected by it and the fight for access to precision medicines like Orkambi.

The second was to help us, and you, understand more about what to expect from the debate. A group of people affected by CF – either because they have it themselves (like me) or have someone in their family who does – gathered to contribute and help Paul understand how much this all means to us.

Alasdair, whose outreach work is entirely focused on engaging people in the work of Parliament, has a personal connection to CF, so he was keen to help us understand what we can expect from the debate on Monday.

Most importantly, he reminded us that despite our collective desperation for a solution, this debate won’t result in a change in the law or an immediate decision around access to Orkambi. What we should hope to see, however, is the minister who has to respond to the debate making a commitment to keep discussing this issue with the relevant people and organisations.

That’s what we need: for our politicians to put pressure on all sides to work together to find a solution for everyone with CF eligible for Orkambi and the pipeline of new treatments we know are coming. Alasdair tells us this will happen through a passionate, informed debate and continued pressure from our MPs on the Government to comment on progress.

Traditionally, these kinds of debates are not hugely well attended. However, Alasdair told us that we shouldn’t be worrying about the number of people in the room. What matters far more is the passion and commitment with which they speak, and how deeply engaged they are with the issue they are debating on. This passion, commitment and engagement will be driven by the personal stories that the CF community has been sharing with their politicians since the debate was announced and in the years of campaigning leading up to it. And that still counts going forwards. 

What next?

“Nothing catches a member’s eye more than a personal story,” Alasdair told us in the room on Tuesday, “I cannot emphasise enough how important your stories are.”

Alasdair makes a great point, and this is one of the reasons that the Trust often refrains from providing ‘template’ emails for the CF community to send to their MPs. Hundreds of charities are lobbying MPs every day on thousands of issues, many of them sending blanket, cut-and-paste templates that are easy for MPs to skip over. If we can take the time to personalise the communications we send – or even better, drop into our MPs’ constituency surgeries – we can catch their eye and grab their attention, and get them on our side.

We all hope that Monday brings progress and a commitment from the government to engage with Vertex, to speak with the National Institute for Health and Care Excellence (NICE), and work with NHS England to try to find a solution for the thousands of people who are desperately waiting for access to these new treatments.

We know this isn’t the end of our journey, nor of the fight to beat CF for good. But we at the Trust certainly know that we wouldn’t be where we are today without your tireless work, and that there’s nothing we can’t achieve without your passion and commitment to making things change for the better.

Find out how you can contact your MP and let them know what precision medicines could mean for you and your friends and family here. You can also find out more about the debate and what to expect on the Parliament website.