RUXOLITINIB (OPZELURA) NEWS
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On 10 July, NICE published its Final Draft Guidance confirming that after Vitiligo Support UK's, the BAD's, the Vitiligo Society, & Incyte's appeal, they still refused to recommend ruxolitinib for prescription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.
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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.
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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.
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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.
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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.
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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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About
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Welcome to our organization, dedicated to uncovering the science behind treatments & ensuring that every patient receives the care they need for the skin they're in.
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We proudly operate as volunteers, minimizing administrative costs to maximize support for our community.
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With resources & advocacy for over 4,500 patients, we invite you to join us in accessing our free services & making a difference together.
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Your journey towards informed treatment starts here!
Welcome to our community of those living with vitiligo.
With nearly 1% of the population affected, we understand the unique challenges and mental health struggles that many face.
While there’s more awareness and celebration of our skin condition, we still encounter dismissal from the medical community.
We are here to support each other through this journey, providing understanding and encouragement.
Vision
If you have vitiligo, you will be used to people saying, did you spill paint over your skin?
Did you not use your fake tan properly?
Have you burned yourself?
Our vision is for vitiligo patients to be treated with tolerance, respect, & understanding of the impact of our skin disease.
This includes by the medical profession, so that patients can gain access to treatments & talk about how the disease may have reduced their lives with its changes to their skin.
