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By John Harris, MD, told to Hallie Levine
I have been a vitiligo researcher for almost 20 years. While it affects people of all races and ethnicities equally, it is more visible in people with darker skin tones. As a result, they may be more aware of it or experience more social stigma. But what I tell people is that there has never been a more exciting time when it comes to vitiligo treatment. Last July, the FDA approved ruxolitinib (Opzelura) as the first drug to restore pigment in people with vitiligo. More drugs are in the works. I hope some of these prove revolutionary for people of color with vitiligo.
The challenges of finding treatment
Historically, dermatologists have dismissed vitiligo as simply a cosmetic concern. Many people have come to me in despair after seeing five or six other dermatologists who have told them their condition is no big deal. But research shows that people of color have a more negative attitude toward their vitiligo than people with lighter skin. This may be because in certain cultures, such as some in South Asia or Africa, there is a lot of social stigma around vitiligo. There are misconceptions that the condition is contagious, a form of leprosy, or even a form of punishment from God. Since darker-skinned people are often more affected by vitiligo than lighter-skinned people, their quality of life can be affected even more.
Also, some of the early drugs we used to treat vitiligo only made the problem more pronounced in darker skin. Take monobenzone (Benoquin), which for years was the only FDA-approved treatment for vitiligo. This medicine works to depigment the skin and it does so very quickly, after about 12 months of use. If you’re a redhead with very fair skin, that’s not a big deal. But if you are a person of
color, there are many social implications. Take Michael Jackson, for example, who went public with his vitiligo and whose autopsy results reveal that he used monobenzone. People accused him of wanting to be white and he said that he was ashamed of being black. But he wasn’t. He was just trying to treat his vitiligo.
Some of the other therapies that we have, like UVB phototherapy, haven’t been much better. While UVB phototherapy works well, it can be very difficult to access. You have to drive to your dermatologist’s office two or three times a week, and it’s very expensive. If someone does not have access to transportation or cannot afford to take time off work or find child care, then they may not always be able to access treatment.
Enthusiasm for new treatments
Ruxolitinib (Opzelura) may soon become the gold standard for vitiligo. It is a type of drug known as a JAK inhibitor. It blocks JAK1 and JAK2, two enzymes that add to the inflammation that causes vitiligo. A study published last year in The New England Journal of Medicine found that it restored pigment in about a third of patients who used it for 6 months. I am very optimistic that it will work well for many people of color who have vitiligo. While we didn’t have as much diversity in clinical trials as we would have liked, we are happy to report that it seems to work just as well for dark-skinned people as it does for fair-skinned people.
I see ruxolitinib as just the beginning of a new wave of effective drug treatments. Ruxolitinib is applied as a cream and is limited to only 10% of a person’s body surface area. Right now, I’m involved in two other clinical trials to test JAK inhibitors that patients can take by mouth. The hope is that they will be even more effective than the topical version. I am also working to develop auremolimab, a type of drug known as a monoclonal antibody, to help treat vitiligo. JAK inhibitors are very effective, but if you stop them, you will relapse. We hope that auremolimab will be a drug that people take for one to two months each year to maintain their new pigmentation.
While these advances help everyone with vitiligo, they will really benefit skin of color. People will no longer have to rely on pigment-removing medications or take time off to travel for UVB light therapy. If you can have infrequent treatments that only require medication for a couple of months each year, it frees up a lot of time.
To treat or not to treat?
Some people of color choose not to treat their vitiligo. That is absolutely fine! I just let them know that if your vitiligo spreads it becomes more difficult to treat later on. This is especially true in areas with bony prominences, such as the hands and feet. The only challenge I see among people with vitiligo is finding good cosmetic coverage if they want to camouflage their condition. A lot of conventional cosmetics that you would find in a drugstore or department store cannot cover vitiligo very well on darker skin. There are a few companies that specialize in vitiligo coverage, but I advise people to get color matched in person. It may not be exactly what you need if you guess and order it online.
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