Pharmacy update: we have switched Homecare high cost drug provision from Lloyds  to Sciensus. This will involve a transition period over the next few months where you may still have outstanding deliveries from Lloyds whilst all patients  prescriptions move across. Apologies for any inconvenience during this transition.

If you have not had a delivery from Sciensus yet, you will unfortunately not know which company holds your current prescription. So for the next few months when arranging a delivery we ask that you contact  Lloyds first (Tel 0345 2636 123) followed by  Sciensus if Lloyds unable to help (Tel 0333 103 9499). If you experience any problems  please then contact your clinical team. Once you receive a delivery from Sciensus you will not need to contact Lloyds again.

We have experienced delays due to staffing shortages at both Homecare companies, so please plan your next delivery when you still have  3-4 weeks of medication left to avoid being left short.

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New CFTR Modulator treatments

This is an exciting time in the history of Cystic Fibrosis care with development and funding of new treatments. These treatments  tackle the underlying cause of your CF symptoms rather than treating the symptoms themselves.

New CFTR modulator therapies, or precision therapies, which include Kalydeco, Orkambi, Symkevi and Kaftrio all target the effect of your own specific CF mutations on the function of your CFTR protein and help it work more effectively.

Importantly these treatments only reach approximately 90% of CF cases and are yet not available for some rarer mutations, and will not be tolerated by all. They are also only available currently  in some parts of Europe and the USA which is an inequality for CF friends around the world. That may feel very frustrating. Be reassured that research is ongoing to expand use of CFTR treatments to wider age ranges, different drug combinations and indeed new approaches the bypass the CFTR protein so may allow corrective non mutation specific treatments to be developed – watch this space, or more specifically Sophie’s research page for new trials you may be eligible and be reassured we will be signposting you as things change. The speed of change has been dramatic which can feel a little overwhelming but also exciting and very hopeful for the future.

With new treatments comes uncertainty and new questions. Frequent questions are around ‘can I stop any of my CF treatments ?’. Be reassured that  lots of research is starting in this area so please talk to us before making any changes. We will be listening carefully to results of these trials as we know these questions are very important to you.

Links & Resources

Click here for access to CF trust page about CFTR modulator treatments and their role in pushing forward access to these treatments

Click here for CF trust factsheet on the emotional and social impact of the introduction of Kaftrio, including for those not elligable for its use