Campaigning for a life-saving drug By Lynsey Beswick, Senior Public Affairs & Advocacy Manager, Cystic Fibrosis Trust Published: 10 August 2021 In summer 2020 after a long and hard-fought campaign, access to the licensed life-saving drug Kaftrio was finally granted for people with cystic fibrosis (CF) across the UK. For five years the Cystic Fibrosis Trust led a national campaign calling for access to three transformational treatments including Orkambi, Symkevi and Kaftrio that have since helped transform the lives of thousands of children and adults living with this life-threatening genetic condition. The campaign was fraught with twists, turns, and an impasse, with Orkambi not recommended by multiple UK drug appraisal bodies amidst concern that the drug was deemed not cost effective From the outset the key challenge was identifying who to influence. There were many decision makers, including NHS and pharmaceutical industry, with no clear pathway to access. As well as applying equal pressure to each of the decision makers, our role sometimes involved bringing all sides together to keep negotiations progressing. Ultimately, we wanted to make sure that the right people were talking about the right issues, at the right time. A further challenge for a smaller national charity like the Cystic Fibrosis Trust was to ensure that the campaign could flex across all four UK nations. Many of the stakeholders and processes in each country were different, but it was vital to secure equitable access. Many tactics such as protests, campaigner events and meetings with parliamentarians were replicated across the countries. It also became apparent that whilst health was devolved, each nation was influenced by the developments in the others - crucially, no one wanted to be left behind. This is useful to consider when influencing health policy. How to influence In terms of how we influenced decision makers; we employed many tried and tested public affairs tactics, but the most effective was simply cultivating and working alongside cross-party parliamentarians and the CF community. The impact of the Trust working alongside the community was undoubtedly paramount to the campaign’s success. A key part of our role was to amplify the voice of individuals and support them in contacting their parliamentarians and galvanizing further influencing actions. The Trust provided online campaign workshops and organized ‘meet and greet’ parliamentary events with constituents and MPs. We also opted for quality over quantity, avoiding generic mass emails to parliamentarians and instead providing adaptable templates that could be personalised and sent individually by supporters. In this way, we could empower the community to tell their story in their own words. This was crucial to ensure that parliamentarians across Westminster, Holyrood, Stormont or the Senedd could publicly pledge their support to the campaign. Many of our most dedicated parliamentarians were those who had been initially contacted by their constituents. We undertook a number of parliamentary actions to influence and raise the profile of the campaign with government. From debates to roundtables and meetings with ministers, we were able to make such an impact due to the unwavering support from cross-party parliamentarians who continued to champion our cause. Another emerging challenge as parliamentarian and community support intensified was gaining wider public support. Only 10,600 people in the UK are affected by the condition, so the general population was largely unaffected and unaware of this issue. Working with the media was instrumental in helping to amplify this narrative and publications such as the Daily Express helped take the campaign and personal stories to a wider audience. Presenting a tangible solution to the problem However, the critical (and perhaps most understated) element of the campaign was not only being effective in influencing activity, but the ability to present a tangible solution to the problem. The Trust advocated the utilization of the UK CF registry database to gather real-world data on the efficacy of the drugs. This solution was eventually considered and adopted as part of the final deal for access. Whilst influence and pressure on all sides were important, it was essential to ensure there was a workable and practical resolution. Campaigns can and do take a long time; this campaign took five long years. The success of the campaign and the positive impact on many lives was amazing to hear, but it was also difficult knowing that during this time many people sadly lost their lives. It serves as a stark reminder of why this issue was so important and why we could not give up. So, for anyone reading this who is currently campaigning, remember for whom and why you are campaigning. And keep going!