NHS patients with the blotchy skin condition vitiligo could have access next year to a cream that will make it go away in a matter of months.
British health regulators have approved the first effective treatment for the disease that causes white patches on the body.
Vitiligo is caused by a lack of melanin, the substance that gives skin its color, and is often triggered when the immune system mistakenly attacks melanin-producing cells. The condition – which affects Victoria’s Secret lingerie model Winnie Harlow – was considered untreatable, but a drug normally used to treat cancer has been shown to reverse the effects.
The drug, ruxolitinib, is applied as a twice-daily cream and has been shown in studies to return skin color to its natural pigment within six months.
PATCHES: Model Winnie Harlow developed vitiligo when she was four years old
The condition – which affects Victoria’s Secret lingerie model Winnie Harlow (pictured) – was deemed untreatable, but a drug normally used to treat cancer has been found to reverse the effects
Available in the US, it has now been found safe and effective by the Medicines and Healthcare Products Regulatory Agency, the UK’s medical regulator, so it can be offered to vitiligo patients over the age of 12.
This means that ruxolitinib can now be purchased through a private clinic, but also opens up the possibility of the NHS offering it.
The NHS spending watchdog, the National Institute for Health and Care Excellence (NICE), will meet in January to decide whether the health service will cover the cost of treatment for the around half a million people in the UK living with vitiligo.
Campaigners have urged NICE to fund ruxolitinib as the cream is prohibitively expensive – a 60g tube, which lasts around two months, costs around £1,000 on a private prescription.
‘This drug is a phenomenal step forward for vitiligo patients as it is the first effective treatment,’ says Emma Rush, founder and CEO of the Vitiligo Support UK charity.
“It could be life-changing for patients, but many won’t be able to afford to pay for it privately, so we hope NICE agrees to fund it so patients can get it on the NHS.”
Vitiligo usually develops at a young age and can affect any skin color. Sufferers begin to notice white spots on the body, which can appear anywhere. Some may develop just a few small spots, but for others they may cover large areas. There are also cases where it can cover the whole body – known as universal vitiligo.
The cause is not known, but it is more likely if there is a family history of the condition or other autoimmune problems.
Patients often rely on makeup to hide their blemishes and many take antidepressants as a result of their condition.
“People feel incredibly self-conscious about their patches,” says Ms. Rush. “They’re afraid that when they go on a job interview or a first date, others will be put off by how different they look.”
So far, some steroid creams have restored a small amount of color to the skin, but experts say they are not good enough. ‘These creams are hit and miss and largely ineffective,’ says Dr Viktoria Eleftheriadou, dermatologist consultant with the Walsall Healthcare NHS Trust.
Ruxolitinib was originally designed to treat bone marrow cancer because it can block the growth of cancer cells in the blood. However, researchers found that when used in a cream, it can also suppress the immune system and stop the loss of skin color caused by vitiligo.
Alicia Roufs, 46, from Minnesota, has been living with vitiligo since she was three months old.
She now leads the Minnesota vitiligo support group VITFriends, but says the condition left her feeling isolated from an early age.
“I got spots on my face when I was six, and by the time I was a teenager, most of my body was affected,” she says. “I was bullied and scolded at school.”
The drug, ruxolitinib (pictured), is applied as a twice-daily cream and has been shown in studies to return skin color to its natural pigment within six months
She tried a number of treatments, but nothing helped.
But when ruxolitinib became available in the US last year, Alicia gave it a try.
She started using the cream last September. Twice a day she dabbed a small amount—about the size of a 10 pence coin—on her face.
“I decided to see how that went before using it elsewhere,” she says. The results were astonishing.
‘Within a month I noticed that my face had regained its colour. Within six months, the color had completely changed.
“All my life I thought I would never see color on my face again, and then it just came back. Sometimes I look in the mirror and I don’t recognize myself.’
Alicia says she has no serious side effects, although she has suffered from acne — a common symptom seen in studies.
The treatment is not a cure – patients must continue to use the cream or the vitiligo will come back.
In addition, the treatment will not completely rid Alicia of the condition.
“I have vitiligo all over my body – it would cost a fortune to use the cream all over and I would need a brush,” she says.
But she believes the treatment should be offered to all vitiligo patients who want to reverse the condition on visible parts of their body, such as their face or arms.
“This drug is a total game changer. I hope patients in the UK can get it on the NHS because there’s nothing like it.’