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On 10 July, NICE published its Final Draft Guidance confirming that after Vitiligo Support UK's, the BAD's, the Vitiligo Society, & Incyte's appeal, they still refused to recommend ruxolitinib for prescription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.
​
About Vitiligo Support UK
It is estimated that almost one in a hundred people have vitiligo.
You may not see people with the condition because we frequently cover our vitiligo patches up with makeup, fake tans or camouflage.
There is no cure for vitiligo; however, there are treatments that may be effective for you.
Read more about how to access treatments, manage the impact of your skin disease, & protect your vitiligo patches from burning.
We are all in a different place with our vitiligo, sometimes struggling, sometimes tolerant of it, sometimes celebrating the differences between us all that make us unique.
We wanted to share the lovely affirmations written by a young girl after her vitiligo appointment - they are such a great starting point to your life with vitiligo and to every single day.
OUR VITILIGO MAKES US SPECIAL AND UNIQUE!​​​​​​​​​​​You can join us via social media (see below), you can donate to us via JustGiving https://checkout.justgiving.com/yy2xtmwiot or you can read more about what we're doing here on this website.
Vitiligo Support UK: news, information and support
About Us
Vitiligo Support UK is a small charity in terms of funding & size but provides extensive advocacy & support for everyone with vitiligo, their family & friends, resident in England & Wales.
We are involved with the British Association of Dermatologists in different roles, & our founder provided patient experience to the Guidelines for Managing People with Vitiligo and the Guidelines for Narrowband UVB.
Our founder has vitiligo & so the charity has a unique understanding of what navigating the health care system in the UK is like & the treatments that are available for us, if we advocate for our health.
Join our community of four & a half thousand people on Facebook & share in the support & information there.
More information about vitiligo & Vitiligo Support UK
The Vitiligo Guidelines in England & Wales
As a patient representative, our founder worked on the Guidelines for Managing People with Vitiligo and the Guidelines for Narrowband UVB.
In the Guidelines, check out the treatment pathway in Figure 1/Section 4. This can be printed out & taken with you to your GP.
More information about the Vitiligo Guidelines and how they can support your quest for access to treatments in primary & secondary care in England & Wales can be found here
​
​
Volunteering
We always value people sharing in our values and our goals. Contact us if you want to volunteer on new projects.
A button not a switch
Living with vitiligo acquires constant adjustment to the changes that come to your skin & may consequently come to your life. It's not a one time switch, it's a long term button!
We are here via our Facebook group to answer your questions, whether you've had vitiligo for years or whether you are newly diagnosed.
You may also find the resources on this website useful in your quest for gaining comfort in your skin.
​
​
​
Resources from the Centre for Appearance Research (CAR) - Appearance Research | UWE Bristol
​
​
Ruxolitinib
Vitiligo Support UK provided key advocacy & support for Incyte's (the manufacturer) application to NICE to consider whether Opzelura should be made available on the NHS. This involved extensive written work, meeting deadlines, lobbying for patients to provide feedback on the impact on them of their vitiligo & liaison with our team of dermatologists for them to support our appearance at the NICE committee.
The decision on this topical treatment will be made public on 10 July. See upcoming posts on our attendance at the BAD Glasgow conference for more information on other treatments also in the pipeline.
Donations
We work with almost zero administrative costs because of very generous donations of time and resources.
We need funds to provide leaflets to dermatology departments covering sun care, cover up products & how to access them, and other practical tips for newly diagnosed patients living with vitiligo.
You can donate via EasyFundraising, every time you shop with a partner site online or JustGiving.
https://www.easyfundraising.org.uk/.../vitiligo-support-uk
​
https://www.justgiving.com/vitiligosupportuk
Posts
In our posts below, we have covered some of the key foundations for living your life with vitiligo.
These are thinking about whether you want to treat patches, & not all people do, thinking about whether you want to try and reduce their visual impact, & not all people do, and taking care of your skin in the sun (something we all need to do!).
In our Facebook group, you can print some of this information as leaflets. We are trying to reduce our environmental impact & provide most information online.
Our goal as a charity is to support you in your journey with vitiligo & help you take tender care of your skin.