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An opportunity for young people to share opinions and feelings about Kaftrio

Since Kaftrio became available to eligible people in the UK in August, young people with cystic fibrosis (CF) have shared mixed emotions on social media. The Trust’s Youth Advisory Group (YAG) is running a survey for people with CF aged 12 to 25 to share their thoughts and feelings about the new medication. Here, Cicely, 22, explains why YAG decided to run the survey and what they hope to get from it.

Young white woman wearing glasses and stripy t-shirt, smiling at the camera

We decided to do a project around Kaftrio as it is such a historical moment, not just in the CF world but for science all round. This moment was such an enormity in the community – there was understandably going to be a wide range of emotions and feelings towards it.

We felt it right that we gave everyone in the community a voice – everyone deserves a chance to say how they feel. We wanted to give a chance to allow people to feel how they feel and to be heard! I saw so many posts online saying: "I know I shouldn't be feeling like this BUT...." and it made me feel so sad that a community that is normally extremely supportive to one another was coming undone.

The project involves completing a survey (anonymously) on SurveyMonkey. It asks questions about how you are feeling around the news of Kaftrio. We will then share findings with the community via our youth Instagram.

I am in the 10% who do not have the right mutations to be eligible for Kaftrio but, as an active member in the CF community, I could see the emotions on both sides. I have known for a while that my mutations were not common so the news I couldn't take Kaftrio didn't shock me, but I did feel disappointed. I wanted everyone in the community to come together and share their feelings as although I felt disappointed, I can understand the excitement around the drug.

The CF community is so important to me as, even though we cannot meet in person, it has provided a sense of togetherness. I have made so many friends through CF that I couldn't imagine not having in my life. The community is a place to feel safe and secure, it allows a sense of belonging that many with CF do not feel. The sense of being alone with this illness is one that resonates with a lot of us and with technology and social media I am thankful that I do not feel this way anymore. We go through a lot with this illness and it's nice to feel like you don't have to explain everything in immense detail because they've most likely been through it too.

People with CF aged 12 to 25 can complete the survey here. Follow the @cftrustyouth Instagram to keep up to date with the project.