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RUXOLITINIB (OPZELURA) NEWS

On 10 July, NICE published its Final Draft Guidance confirming that after Vitiligo Support UK's, the BAD's, the Vitiligo Society, & Incyte's appeal, they still refused to recommend ruxolitinib for prescription by the NHS for vitiligo patients over the age of 12.

The decision was a complex one, and related to the methodology used by NICE for assessing the drug's effectiveness against a comparator treatment, in this case, phototherapy.

As a charity, we were present at all the meetings considering this issue, and provided expert testimony from a representative patient and from two dermatologists, one of whom runs a leading vitiligo clinic in England and Wales and one who is a leading senior figure in psychodermatology.

The repeated decisions not to listen to our patient testimony and our experts are very disappointing, nor to the testimony provided by the British Association of Dermatologists from another leading expert in vitiligo who runs the other of two clinics dedicated to vitiligo patients in England & Wales.

In our opinion, NICE have failed to respond to the significant need of vitiligo patients for the following:

1) a specific treatment for vitiligo, rather than the unlicensed treatments we currently have,

2) something more convenient than a year or two years of going to a hospital twice a week for phototherapy, including in the current environment where patients wait a year or two for an appointment to see a dermatologist to receive referral to the phototherapy unit and

3) to be on a par with other autoimmune diseases and other skin diseases that all have state-of-the-art treatments specifically designed for their skin condition.

However...

There are more trials in the pipeline, and a number of different treatments coming down through Phase II and III of clinical trials.

As a charity, we will go on pressing the issue of our being the "poor relation" of skin diseases and we will not stop fighting for full clinical recognition of our disease and its impact.

We are in a better position than ever before, with drug companies interested in a solution to our skin disease. The possibility of an effective treatment remains in sight, despite this very frustrating setback.

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Media & recognition

Emma Rush
Jul 6
1 min read

Updated: Jul 7

Over the last twelve months, we've contributed to a number of media stories/appearances.

The most recent can be found here:

Appearance on Morning Live with Georgia May Foote

Vitiligo Support UK – BDNG

In addition, we received an acknowledgement letter for the work that we did supporting the patient case for ruxolitinib (tradename: Opzelura) to be made available on prescription with the following quote: "I have obtained feedback on the impact of your engagement from the NICE technical team (Associate Director, Technical Adviser and Technical Analyst). The feedback combines feedback on your organisation submissions and the input from the patient experts. Your input was incredibly useful, particularly with regards to:

• Representation of vast amounts of different perspectives of people living with vitiligo

• Different sources of evidence and data collection methods

• Highlighting the unmet need for effective treatments in this condition."

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