Following the final decision back in March by NICE to recommend the JAK inhibitor medicine ritlecitinib (Litfulo) for routine commissioning from the NHS, for the treatment of severe alopecia areata in patients over aged 12 and over, we wanted to provide a further update.  

From the final NICE guidance publication date of 27th March 2024, NHS England had 3 months in which to comply with NICE’s recommendations (2 months for NHS Wales). The SMC in Scotland followed with the same recommendation as NICE for NHSScotland, and Northern Ireland was expected to follow NICE guidance.  

As the 3-month deadline has now expired, we expect to see ritlecitinib being made available to patients across the country. However, progress has been slower than many patients were hoping for. Unfortunately, as anticipated by Alopecia UK, we are already seeing inconsistent approaches to prescribing ritlecitinib across the NHS in the UK. We are hearing that some people in our community are being added to waiting lists to start the medicine when it becomes available, some are being told that ritlecitinib will not be available at their hospital, and small numbers have managed to get a prescription.  

A common thing we were hearing from people was that their dermatologist did not feel confident enough to prescribe the medicine as they didn’t feel the NICE guidance gave enough detail about when to prescribe and when not to prescribe, when to start treatment, when to stop.  

The British Association of Dermatologists (BAD), with support from Alopecia UK, has taken the additional step of publishing a supplementary guidance note to help dermatologists with the prescribing of ritlecitinib with severe alopecia areata. This guidance is supplementary to NICE’s guidance and is not endorsed by NICE. You can find BAD’s supplementary guidance here 

If patients are met with feedback from doctors along the lines of “We are waiting to see if NICE issue some additional guidance” or “We are unclear on qualifying criteria for prescribing ritlecitinib”, be sure to let them know about the supplementary guidance published by BAD. This might give more dermatologists the confidence to prescribe ritlecitinib and/or have conversations about adding the medicine to your hospital’s formulary (if it’s not already on there).  

Whilst we will continue to do what we can to advocate for fairer patient pathways, we believe that people affected by alopecia are also going to need to advocate for themselves. We will try our best to provide you with the information you need to do this and recommend reading our ritlecitinib announcement, if you have not done so already, from earlier this year along with all the further information links provided at the bottom of our news item. There is a lot of information provided within but we urge anyone considering ritlecitinib (or any medical treatment) to understand all you can about that treatment before embarking on it. Read our earlier announcement, and the further information links, here 

If you come across challenges in your Trust, then please let us know. Please understand that we cannot fix the problem on an individual basis but we are building a picture to support our conversations within the wider NHS. It would be useful for us to hear the following; 

  • What NHS Trust your hospital is part of

  • If the dermatologist has confirmed that you are eligible for ritlecitinib 

  • What reason they gave you for not being able to prescribe ritlecitinib 

  • If they have agreed to see you for a follow up appointment in the hope that they will be better placed to prescribe in the future 

If you would like to share your experience with us, please email [email protected]