Current issues

Ahead of the conclusion of the government's review of Personal Independence Payment (PIP), led by Sir Stephen Timms, we've published a report which shows the extent the system doesn’t work for people with CF. 

We're calling on the Government to reform the PIP system so that it's fairer and works properly for people with CF.

You can help by contacting your MP and sharing the report with them.

Find out more about our asks around PIP

Certain batches of Hibiwash have been recalled. This is due to possible contamination with Burkholderia cepacia bacteria.

Learn more

The UK Health Security Agency (UKHSA) is looking into an outbreak (a sudden spread) of a bacteria or germ called Burkholderia stabilis (B. stabilis). Their tests found that some alcohol-free, non-sterile skin cleaning wipes that people can buy may have the germ in them.

Learn more about the safety update

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. 

Find out more about Alyftrek

The Government has announced plans to reform the current benefits system for disabled people. The proposals are being discussed and debated by MPs. Visit our FAQ page to find out more about the proposals, how we have responded so far, next steps, and what you can do.  

Find out more

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

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

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

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