Updated 14th March 2024

The National Institute for Health and Care Excellence (NICE) announced on the 18th July 2024 that it would not approve the new drug, Ruxolitinib, for use through the NHS. The Vitiligo Society along with four other organisations appealed the decision. The appeal was heard on the 11th October 2024 and on the 17th December 2024 NICE announced that 3 of the appeal points submitted were upheld by the Appeal Panel. This meant that the Appraisal Committee:

The next Appraisal Committee Meeting will be held in May 2025 to review the information submitted as part of this upheld appeal.

This is our last chance to influence the decision of the NICE Appraisal Committee and ensure the treatment is made available to NHS patients. Over the past two months we have undertaken the following actions, doing everything in our power to ensure the voices of vitiligo patients are heard in this process:

as outlined in the previous paragraph, in February 2025 The Vitiligo Society, in partnership with aligned patient organisations and dermatology specialists, published a joint letter to policy and decision-makers asking for support prioritising the appraisal of ruxolitinib cream and translating what access to innovative treatment means for our community.

We are pleased to announce that following this letter we’ve had a series of responses from senior leaders across Government and NHS England and are having ongoing conversations to work collaboratively towards a hopefully positive outcome.

Write to your local MP: Explain in your own words how you feel disregarded by the NHS and devastated by the decision from NICE not to approve Ruxolitinib for vitiligo patients. We have provided a template letter for you to download and edit, and guidance for you to refer to. Ask them to table a parliamentary question asking what is being done to ensure innovative treatment options for vitiligo patients.

Contacting local press: Local newspapers, radios and TV are an excellent way to raise awareness if you feel confident to be in the public eye. We have provided some helpful tips on how to speak to the media here, and you can also use our Press Release and Media Factsheet.

Become a Member of our Society: Our staff member and volunteer team have spent 100s of hours working to try to get this treatment approved. Please consider joining our charity as a member or making a one-off donation to support our work – we need support now more than ever.

Currently there are no licensed treatments for vitiligo available through the NHS. Instead, treatment guidelines suggest the use of unlicensed treatments used with the aim of restoring the skin’s colour (repigmentation). These treatments are corticosteroids and calcineurin inhibitors (creams) and they are used on the skin. After trying these, some people then try treatment with light (phototherapy).

Unlike these options, Ruxolitinib cream is a licensed treatment for non-segmental vitiligo that affects the face. Ruxolitinib is available in the UK on private prescription, despite not being available on the NHS.

The NICE technology appraisal (TA) guidance makes recommendations on the clinical and cost-effectiveness of medicines and treatments. It helps to ensure that the NHS uses its resources fairly and effectively.

It our understanding that whilst the clinical-trial evidence submitted did show that ruxolitinib cream increases re-pigmentation and reduces how noticeable vitiligo patches are compared with placebo (a cream that does not contain any of the drug), the evidence submitted during this appraisal left too much uncertainty in trying to demonstrate how well ruxolitinib cream works compared with unlicensed, available treatment such as phototherapy.

NICE also concluded that it was uncertain, based on the evidence submitted, whether treatment with ruxolitinib cream would improve people’s quality of life. Finally they concluded that the cost-effectiveness estimate would be higher than what they would consider an acceptable use of NHS resources.

We believe that vitiligo patients in the UK should have access to the most recent development in treatments. We were devastated by the decision to deny NHS patients access to Ruxolitinib. We also recognise that this was a first attempt to get a licenced treatment for vitiligo available on the NHS. There are numerous treatments in development by different companies (such as Upadacitinib, Povorcitinib, Afamelanotide, and Ritlecitinib) so this decision also has the potential to acknowledge the unmet needs of vitiligo patients in the UK and open doors for future treatment approvals.

NICE guidelines are evidence-based recommendations for health and care in England. In Scotland, it is the Scottish Medicines Consortium (SMC) who review new treatments. The SMC also reached the decision not to approve this treatment on the NHS shortly after NICE, read more here. We expect that Wales and Northern Ireland will follow NICE’s technology appraisal decisions. Find out more about the relationship between NICE and Welsh Government/NHS Wales here, and Northern Ireland here.  

We have been advocating for improved treatments for vitiligo since the 1980s and we will continue to fight to ensure that people living with vitiligo will be able to access new treatments, including JAK inhibitor drugs, from the NHS. Frustratingly, this is going to be a longer battle that we first anticipated.

Ruxolitinib is currently the only treatment for non-segmental vitiligo licenced by the Medicines and Healthcare Products Regulatory Agency (MHRA) in the UK. NICE’s decision not to recommend this treatment seems to suggest that vitiligo does not impact patients significantly enough to justify the cost of the drug, despite all the research and patient testimonies our charity shared during the appraisal process.

Reference:
¹In the largest ever UK survey of vitiligo (more than 700 people) 80% said vitiligo negatively impacts their appearance, and almost half (46%) felt isolated and depressed. The #LetsTalkVitiligo campaign was launched by The Vitiligo Society to raise awareness and understanding among healthcare professionals and the public. The independent study, commissioned by the UK charity that supports those with vitiligo, found that just 15% of those diagnosed felt informed about vitiligo, with a third of people feeling dismissed and confused when first speaking to their GP or healthcare professional. 

Funding disclosure:
The Vitiligo Society has project work supported by an educational grant from Incyte Biosciences UK Ltd. The Vitiligo Society maintains full control over the all project management and content, ensuring independence and impartiality in its work. When it comes to any external funding we follow the current guidance and rules as set out by the Charity Commission and the Fundraising Regulator. We report any research collaborations and/or financial contributions received from industry in our annual reports and accounts as well as being transparent about our partnerships on our website.