We have tried to anticipate the type of questions our community might have regarding the recent decisions by the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) to recommend ritlecitinib (Litfulo) for routine commissioning on the NHS for the treatment of severe alopecia areata for people aged 12 and over.

As we learn more, we will update our webpages. 

I want to try ritlecitinib, how and when can I get a prescription for this new medicine?

For patients in England

Section 7 of the National Institute for Health and Care Excellence (Constitution and Functions) and the Health and Social Care Information Centre (Functions) Regulations 2013 requires integrated care boards, NHS England and, with respect to their public health functions, local authorities, to comply with the recommendations within 3 months of NICE's final appraisal document's date of publication (UPDATE: final decision published 27th March 2024), so approximately 4 months in total. 

When NICE recommends a treatment ‘as an option’, the NHS in England must make sure it is available within the period set out in the paragraphs above. This means that, if a patient has severe alopecia areata and the doctor responsible for their care thinks that ritlecitinib is the right treatment, it should be available for use, in line with NICE’s recommendations.

However in reality we know it takes longer to get new medicines into clinics. The process is complicated and requires a local clinician to submit the medicine for use to their Integrated Care System (ICS).  They decide how to spend resources based upon the needs and priorities of their local community.  We expect there will still be an inconsistent approach to alopecia care across England, and other parts of the UK.

For patients in Wales

The Welsh ministers have issued directions to the NHS in Wales on implementing the NICE technology appraisal guidance for ritlecitinib. We understand the above NICE process applies to Wales, but instead of working to complying with recommendations within 3 months of NICE’s final appraisal document’s date of publication (27th March 2024), NHS Wales works to a quicker timescale of 2 months from date of publication.

Similar to England, the quality and availability of healthcare services in Wales can vary significantly based on the geographic area or postcode in which you live. This means we expect the speed of change in a clinical setting to vary.

For patients in Scotland

On 8th April 2024, the Scottish Medicines Consortium (SMC) accepted ritlecitinib for use by NHS Scotland for the treatment of severe alopecia areata in patients aged over 12 years old. Whilst NHS Boards are expected to follow SMC advice, the implementation of SMC accepted medicines is subject to local NHS Board decision regarding whether or not to include these in their formulary (a list of medicines that have been funded by the Trust/ Board so that doctors know what they can easily prescribe within their NHS clinic).

When SMC accepts a new medicine, NHS boards are expected to make it, or an equivalent SMC-accepted medicine, available. NHS boards publish the medicines included and excluded from their formularies together with the reasons for such decisions.

For patients in Northern Ireland

The Regulation and Quality Improvement Authority (RQIA) in Northern Ireland oversees the implementation of clinical guidelines.  The Department of Health (DoH) reviews NICE guidance to assess its applicability to Northern Ireland. If deemed appropriate, the DoH endorses the guidelines for implementation within the Health and Social Care system. While NICE guidelines are not automatically accepted in Northern Ireland, the RQIA (Regulation and Quality Improvement Authority) considers local context and adapts the guidelines as needed to align with the region’s specific healthcare environment.  Alopecia UK does not yet know what is happening in Northern Ireland regarding ritlecitinib. As soon as we find out any information, we will share with our community.

I can’t get an appointment to see a dermatologist. Is there a way to get ritlecitinib without a dermatology appointment? Can I get it from my GP?

We do not expect GPs to be able to prescribe ritlecitinib. Generally, diagnosis and treatment for alopecia happens in secondary care, in dermatology.  We believe it to be very unlikely that a GP will prescribe a JAK inhibitor medicine but you can make enquiries with your GP and they will advise.

I am currently taking another JAK inhibitor medicine privately, can I now switch to ritlecitinib on the NHS?

You will need to discuss this with your clinician. All medicines work differently and so what works for one person may not be the best solution for another.

Why did NICE/SMC approve ritlecitinib for routine commissioning on the NHS and not baricitinib?

We were disappointed that baricitinib was not recommended by NICE or SMC last year, hence why Alopecia UK submitted an appeal against NICE’s decision (The process in Scotland is different where patient groups like Alopecia UK do not have the opportunity to appeal SMC’s decisions). The ritlecitinib and baricitinib appraisals with NICE and SMC were separate processes, with submissions including clinical trial data and cost-effectiveness data from two different pharmaceutical companies – Pfizer for ritlecitinib, and Lilly for baricitinib.

We hope that maybe in light of the news of the approval of ritlecitinib, Lilly will consider making another submission to NICE and SMC for baricitinib, if it is possible for them to do so.

Where can I find out about the potential side effects of ritlecitinib (Litfulo)?

You can read about the potential side effects and safety information in the patient information leaflet for Litfulo here. You must seek the advice of a medical professional before taking this medicine. 

What is happening now with baricitinib?

We have no further update to share regarding baricitinib. It is up to the pharmaceutical company, Lilly, to decide if it wants to resubmit to NICE and SMC.  Alopecia UK will continue to represent the patient voice at NICE and SMC, if Lilly decide to try again, or any pharmaceutical company has new medicines being appraised. I really want this treatment for my child but they are under 12. Is there a way for them to get this?

Ritlecitinib (Litfulo) is not licensed for use on children under 12 by the UK medical authorities.  It is not known if Litfulo is safe for people under 12, as there have been no studies on this age group.

My GP won’t refer me to dermatology, what can I do?

You're entitled to ask for a referral for specialist treatment on the NHS.

However, whether you'll get the referral depends on what your GP feels is clinically necessary in your case. Generally, you cannot self-refer to a specialist within the NHS. You can learn more here.

If you are not satisfied you can raise a concern about your care, the NHS website is a good place to start. The Patient Advice and Liaison Service (PALS) is a free, confidential and independent service that you'll find in most hospitals in England.

In Wales, each health board has a PALS or Patient Support Services. We cannot find a handy postcode search function, as above for England, but you should be able to find details on the health board’s website.

In Scotland, the Patient Advice and Support Service (PASS) can help you with any concern you have with your NHS care in Scotland.

In Northern Ireland, you can raise concerns with your individual health trusts. This page provides more details on how to do that. 

My NHS Trust is refusing dermatology referrals for patients with alopecia, what can I do?

Sadly, patients with alopecia areata are currently facing big challenges with dermatology including:

-        Long waiting lists for dermatology appointments – anything from a couple of months to 5 years.

-        Only 1 in 4 patients with alopecia areata are referred from their GP to dermatology.

-        Some NHS hospitals have stopped referrals to dermatology for alopecia patients. Reasons for stopping referrals for alopecia patients include prioritising other conditions, asserting that alopecia is a ‘cosmetic’ issue, and/or concluding that no treatment options exist.

Only with improvements to dermatology care, will all patients with severe alopecia areata have access to the treatment pathways they deserve.

If you know your NHS Trust is refusing dermatology referrals for patients with alopecia, please consider challenging this position. The links provided in the answer above may be useful, or consider contacting your MP to see if they can support you.

Whilst Alopecia UK does not currently have the resources to challenge individual NHS Trusts, if you have been informed that your NHS Trust is no longer accepting dermatology referrals for alopecia patients, please consider sending details to [email protected] so that we can monitor which areas of the UK are having issues. We cannot get involved in individual cases but we are exploring what we can do with our limited resources to tackle the issues many alopecia patients face with dermatology pathways. 

Can I get a private prescription for ritlecitinib? Does Alopecia UK have any information on what I can expect to pay for ritlecitinib under a private dermatologist in the UK?

We are not party to the conversations that are happening between Pfizer and private dermatologists. If more information becomes available that we can share, we will.

Are all dermatologists able to prescribe ritlecitinib, or do I need to see a dermatologist who specialises in hair loss?

In theory, any dermatologist who has ascertained that you have severe alopecia areata can prescribe ritlecitinib.  In practice, we expect it will be dermatologists who have a specialist interest in alopecia who will be more comfortable to prescribe JAK inhibitor medicines. We expect inconsistent approaches to prescribing across the NHS in the UK, just as with other health conditions.

Will I be able to access ritlecitinib via my private health insurance?

Unfortunately, we are not aware of any private insurance companies covering any alopecia areata treatments in the UK. Individuals would need to enquire with their insurer to see if the recommendations from NICE and SMC change anything.