Current issues

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Current issues

If you're struggling, we're here to help.

If you're struggling with one of these issues, or something else, we're here to help.

  • Alyftrek appraisal

    You may have heard about Alyftrek, a new triple combination modulator therapy made up of tezacaftor, one of the modulators used in Kaftrio, as well as two new modulators called vanzacaftor and deutivacaftor. Alyftrek is currently undergoing NICE appraisal.

    Find out more about Alyftrek

  • Plans to reform the benefits system

    The Government has announced plans to reform the current benefits system for disabled people. The proposals will be discussed and debated, and some will go through formal consultation over the next few months before final changes are made. In this blog, we break down the key changes, and how we’ll continue to fight for a system that supports people affected by CF. You can read our FAQs here. 

    Read blog

  • Creon shortages

    Some people with CF have been experiencing interruptions in the supply of Creon. Find out more about the situation and what we're doing to help.

    Creon is a vital medicine for many people with CF. Although Creon is still regularly coming into the UK, the supply issues may unfortunately continue for a while. We're working with everyone involved to highlight how important Creon is and to try to reduce the impact of these issues on people with CF. 

    Learn more about the Creon supply shortages

     

  • I-neb nebulisers and Promixin

    Discontinuation of I-neb nebulisers and Promixin

    In March 2025, the Department for Health and Social Care (DHSC) issued a National Patient Safety Alert for the discontinuation of the antibiotic Promixin. 

    Promixin is the brand name of colistin, or colistimethate, an antibiotic used to treat Pseudomonas aeruginosa lung infection. It is taken with the I-neb nebuliser.

    The alert states that Promixin supplies are expected to run out by May 2025, due to the product being discontinued. I-neb consumables are also due to become unavailable. This follows the discontinuation of the I-neb nebuliser in May 2024. 

    Clinicians are being asked to switch patients to an alternative brand of colistimethate, such as Colicym, along with a suitable alternative nebuliser. There is expected to be sufficient supply of alternative brands of colistin to meet the greater demand.

    We understand that many people with CF use Promixin and the I-neb nebuliser devices, and this news may be unsettling.  We have answered some questions about what the discontinuance means for people with CF.

    Read our information about the I-neb nebuliser device situation

  • Cost of living

    We know that the cost of living crisis is a concern for many in our community. We've put together the latest information, support and guidance about the cost of living with CF

    Read more about cost of living information and support

  • Staying well over winter

    Autumn and winter can be a challenging time, especially for people with cystic fibrosis and their families. The colder months can bring health risks and added financial stress, but with good preparation it’s possible to ease some of those worries and reduce risks to health.

    Learn more about staying well over winter

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Here to help

If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.

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How we can support you

Whatever you’re going through, we have a range of information and services to help lighten the load.