By Elisa Menendez, ITV News Content Producer
A new skin treatment that has been hailed as a "huge breakthrough in the vitiligo community" could soon be made available on the NHS.
Ruxolitinib cream, branded as Opzelura, is to be reviewed by the National Institute for Health and Care Excellence (NICE) next month as a treatment for vitiligo in teenagers and adults.
Currently, there is no cure for the long-term skin condition and patients who choose to seek treatment have varied experiences.
Ambassador for charity Changing Faces, Natalie Ambersley, told ITV News: “For years and years, we have been trying to look for a cure or something that will slow down the production of patches on the skin, so I think it will be really welcomed by the community.”
Natalie, who struggled for many years after developing vitiligo at the age of three, said treatment is a "very personal choice" and many may choose not to seek it and, instead, celebrate their vitiligo.
“There are some people - like myself - who wouldn’t go through treatment again and there are some desperate for treatment because it really affects their day-to-day life," added Natalie, also a director of the Vitiligo Society, who now wouldn't change her condition "for the world".
"Because of the psychological damage that vitiligo can have on people, I definitely think this is a huge breakthrough and should be an option for people who want to explore treatment.”
Consultant dermatologist Dr Bav Shergill agreed that perhaps society shouldn't see vitiligo as something that needs to be medicalised and treated - but for patients who are seeking treatment it is a "pretty good drug" with strong evidence of its efficacy.
What is vitiligo?
Vitiligo is a long-term skin condition that causes areas of skin to lose pigmentation. It results in the affected area turning white or pink and is usually permanent.
The direct cause of vitiligo is not known, but it is thought to be an autoimmune condition. In some cases, the immune system attacks the body's healthy cells and tissue - such as melanocyte skin cells that make melanin - instead of attacking foreign cells.
It can affect any area of the body but is most likely to develop on the face, neck, hands, and in skin creases. It can also develop around hair roots, turning hair white or grey, or cause loss of colour on the lips.
In some cases it can be linked to autoimmune diseases such as hyperthyroidism, while some see a correlation between their vitiligo patches and eczema.
Vitiligo is not life-threatening but some living with it find it stigmatising - particularly so among people of colour - and the psychological impact can be incredibly difficult.
What is ruxolitinib?
Opzelura is the brand name for ruxolitinib cream which is applied topically on areas affected by vitiligo daily.
Ruxolitinib is a "JAK-inhibitor" - a newer type of medication which interferes with signals in the body that cause inflammation. By reducing inflammation, the immune system settles and therefore decreases symptoms.
In trials of the cream, about half of participants saw a 75% improvement in their facial vitiligo after a year of use. Some saw re-pigmentation in just 24 to 52 weeks of use.
Reported side-effects were acne and itching at the application site, and swelling of the nasal passages and throat.
In a stronger tablet form, ruxolitinib is also used as a targeted treatment for some blood cancers, which carries much more serious side effects. In a topical cream form it was also found to be effective in treating eczema.
The cream was approved in the US by its Food and Drug Administration (FDA) in July 2022 for people aged 12 and over with non-segmental vitiligo.
In February, the European Medicines Agency's (EMA) Committee for Medicinal Products for Human Use recommended the approval of the cream for the same purposes - bringing it one step closer to approval across the EU.
Consultant dermatologist Dr Bav Shergill said the cream would be a welcome addition as vitiligo has fairly limited treatment options.
"It may be that this particular drug isn’t the ultimate answer but at least it can certainly improve vitiligo in some patient groups," he told ITV News.
Dr Shergill pointed out that JAK-inhibitors "don’t have the side effects of steroids but in some cases they can be almost as effective, which is something to celebrate.”
Will it be approved in the UK?
Regulatory body, NICE, is reviewing ruxolitinib as a treatment for non-segmental vitiligo (the most common type where symptoms appear on both sides of the body as symmetrical patches) in people aged 12 and over. The review is to begin in mid-April 2023.
If NICE approves the use of ruxolitinib on the NHS - a process which can take months - it will also need to be approved by the drug regulator, the Medicines and Healthcare products Regulatory Agency (MHRA), to be sold or prescribed in the UK.
NICE does not cover Scotland, as the devolved nation has its own regulatory body.
This means that, should Opzelura be approved, it will still be several months before it will be available for prescription or sale.
'A little boy jumped back when he touched my skin and called it contagious'
For Natalie Ambersley, 40, she has "never known life without vitiligo". And although she now celebrates and is "grateful" for it, she described her younger years growing up with the condition as "awful".
"I’m mixed race, so it’s very visible on my skin. By the time I was five years old, I was probably about 75% white. The first thing my parents wanted to do was explore treatment," she explained, pointing out that there was less understanding around the condition at the time.
She used topical steroid creams for years, before trying a holistic approach by changing her diet, and went on to become a “guinea pig” trialling any new drugs in the market. But she thought regular hospital visits were the norm for all kids.
“It wasn’t until I was nine years old when a little boy came up to me in the playground and went to touch my skin and jumped back and said ‘I think your skin is contagious’ that I really started to understand that I was different. That my skin was very different," she recalled.
"I had a sister, she didn’t look like me. That’s when it really started to go downhill.”
Aside from the normal teenage angst, Natalie had this “extra weight to carry” and her self-esteem plummeted. Though she loved sports she couldn't enjoy them because her legs would be on show in her PE skirt. She dreaded summer and would wear thick black tights. She didn’t have boyfriends because she "didn't feel pretty". She forged countless notes from her mum to be excused from swimming class.
“I’d go into the changing rooms and hide, fearful of being by the pool side because all the other kids would look at me," she said. "It was really damaging. It was awful and invaded my thoughts all the time."
In her later teen years, she would apply layer upon layer of fake tan and despite appearing "orange", it allowed her to “blend in”. She went on to try camouflage make-up which she described as “thick and messy” out of a "huge desire to want to fit in with everyone else".
She stopped having treatment when she was 13. It wasn't until the age of 30 that she tried again - this time phototherapy, an invasive treatment that radiates UV light on the body.
"It completely changed who I am today," she said.
Phototherapy is available on the NHS but can be quite painful (Natalie described her skin burning and being red raw at times) and a person can only have it twice in their lifetime.
There’s a 50% chance it will work, but Natalie's patches began to re-pigiment quickly and within months she booked her first holiday.
“I was on the beach in a swimming costume and I felt completely free, liberated and empowered," she recalled. "I still had vitiligo but the fact my patches were reducing and my natural skin colour was returning was a miracle for me.
“But my white patches are now returning, so unfortunately it’s not a guaranteed treatment that will cure vitiligo,” she said, before adding that her confidence is still much higher than it was years ago.
Natalie also told how vitiligo has impacted her own identity as a mixed race woman of Jamaican and British heritage.
“I’m very proud of both sides of my background," she said. "But I never felt Caribbean enough because my skin was so white - and I’m quite fair as well.
“I remember the dermatologist saying to me there’s potential that you could turn all white with the phototherapy and it filled me with dread.
"I can’t possibly put myself through something that would turn me completely white because that would completely take me away from my Caribbean roots and make me feel like I can’t identify with that side of who I was."
Natalie described how vitiligo can be particularly othering for people of colour, adding: “With Black people or Asian people it is very striking - especially on the face because it’s the first thing you notice."
But she added that she would never want to take away someone’s experience with vitiligo, because white people - on whom the condition is generally less visible - "could be going through the same struggles and psychological issues as a Black or Asian person".
Dermatologist Dr Bav Shergill also questioned whether vitiligo is something that should be treated as people with the condition are otherwise fit and well - but noted the more damaging impact on people of colour.
“It’s a pretty good drug but there are two aspects to this," he explained. “One is, should we learn to treat vitiligo? Albeit only a certain group of patients will respond and you don’t get 100% in every patient so it’s not a miracle cure by any means.
“However, the flip side is, are we medicalising something which is an autoimmune condition - which is a bit mysterious and is difficult to treat - but should we perhaps be looking at supporting those individuals rather than just saying you’ve got a problem let’s treat it?”
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He agreed that the condition is "more apparent" in people of colour, adding: "It’s a lot more culturally stigmatising to have that colour mismatch than in say, a fair skinned, blue eyed, Northern European person - not to say it isn’t disfiguring for them too."
Dr Shergill continued: “Historically, if you had leprosy, for example, you could present with pale patches of the skin. Often people are worried about catching vitiligo - you don’t catch vitiligo it’s an autoimmune condition - but you wonder whether these ideas or tropes from many, many hundreds of years ago are still kind of there?
"It’s a tricky one to be honest. But I like the idea that there are more treatment options".
Ultimately, both Dr Shergill and Natalie believe treatment is a personal choice and those who do seek it should speak to their GP or dermatologist to find what option is right for them.
For Natalie, she has come full circle with how she views her vitiligo and now embraces it - but she acknowledges that is not easy for some people, particularly who have faced societal stigma.
“Everything needs to be normalised," she said. "People with scars, people with acne, people with vitiligo - why is there such a taboo around it? There is no perfect way to look, there is no normal way to look, so just let people be.
“I wouldn’t have treatment now and I wouldn’t change it for the world. Vitiligo is very much part of who I am.
"I feel quite grateful that I’ve got it and now I have a story I can share and use my voice to hopefully help other people who are struggling."
If you have been affected by any of the topics or issues raised, support is available:
Changing Faces is the UK’s leading charity for everyone who has a scar, mark or condition that makes them look different. For advice or support see www.changingfaces.org.uk or call 0300 012 0275.
Vitiligo Society supports people living with vitiligo in the UK, and can be contacted at www.vitiligosociety.org/contact-us/