Why Kaftrio is an emotional issue

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The Cystic Fibrosis Trust and CF teams are aware that the news about Kaftrio becoming available in the UK came quite suddenly. While this is of course welcome news for many, lots of different emotions are being experienced in the CF community at the moment. To support those who may be facing their own issues, the Trust and the UK Psychosocial Professionals in CF have worked together to offer this joint statement to the CF community.

Feelings, even about good news, can sometimes be more complicated than the headlines suggest.

There are of course reactions from people with CF (or their families) whose CF mutations mean they are not currently eligible for Kaftrio, or who cannot take this medication for other reasons. Seeing a lot of publicity and social media activity about Kaftrio therefore can be hard for some people at this time. These reactions are very understandable, and some people are choosing to take a break from social media for a while because of this. It can also feel as if the CF community is being fragmented in some ways, and this can also be hard.

The Cystic Fibrosis Trust and CF teams know that this is a difficult period for those who cannot take Kaftrio, and the Trust remains committed to supporting the development of new and effective treatments for all people with CF whatever their age, genotype or other medical issues. You can read about that research here.

For people with CF (and their families) that can take Kaftrio and are waiting to receive this, some complicated emotions are also possible. People may be feeling unexpectedly worried or overwhelmed or experiencing all sorts of other emotions that they did not predict. Feeling guilty about these emotions can then occur, with people feeling isolated or confused as a result.

Those that have been on Kaftrio for some time already have also told us about some different possible emotional reactions once on this treatment. Any change, even positive ones, can take a bit of getting used to. Some support and some time for adjustment may therefore be needed when starting Kaftrio.

At the same time, it may be hard for others to understand why there are mixed emotions about such a welcome new treatment. There may also be questions or uncertainty about whether improvements in health from taking Kaftrio will affect issues around employment, benefits and plans for the future.

The UK Psychosocial Professionals in CF group (clinical psychologists and social workers working in UK CF centres) is currently producing more information about some possible emotional reactions relating to Kaftrio, that you could experience yourself or hear about. This more detailed information will be available on the Cystic Fibrosis Trust website soon, but in the meantime please be assured that the Trust and your own CF teams are aware of all the above.

Please do talk to us if you are struggling with any emotions around the subject of Kaftrio – we are here to help. You can speak to your CF team about how to access more support with this if required,  or you can contact the Cystic Fibrosis Trust helpline.

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