By John Harris, MD, as told to Hailey 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 self-conscious about it or experience greater social stigma. But I tell people that there has never been a more exciting time when it comes to treating vitiligo. Last July, the FDA approved ruxolitinib (Opzelura) as the first drug to restore pigment in people with vitiligo. More drugs are in the pipeline. I’m hoping some of these prove to be game-changers for people of color with vitiligo.
Challenges of Finding Treatment
Historically, dermatologists have dismissed vitiligo as just a cosmetic concern. I have had many people come to me in desperation after they have gone through five or six other dermatologists who have told them their condition is no big deal. But research shows that people of color have more negative attitudes toward their vitiligo than people with fair skin. This may be because in some cultures, such as those in South Asia or Africa, there is a lot of social stigma surrounding vitiligo. There are misconceptions that the condition is contagious, a form of leprosy, or even a form of punishment from God. Since people with dark skin are more often affected by vitiligo than those with light skin, their quality of life may be affected even more.
Furthermore, some of the early drugs used to treat vitiligo only made the problem more apparent in darker skin tones. Take monobenzone (Benoquin), which for years was the only FDA-approved treatment for vitiligo. This medicine works to lighten the skin tone, and it does so very quickly after about 12 months of use. If you’re a redhead with very fair skin, this isn’t a big deal. but if you are a person
Colour, has a lot of social implications. Take, for example, Michael Jackson, who went public about his vitiligo and whose autopsy revealed he used monobenzone. People accused him of being white and said that he was ashamed of being black. But he was not. He was just trying to cure his vitiligo.
Some of the other treatments we have, such as UVB phototherapy, haven’t been much better. While UVB phototherapy works well, accessing it can be very challenging. You have to go to your dermatologist’s office two to three times a week, and it’s very expensive. If someone doesn’t have access to transportation or can’t afford to take time off from work or child care, they can’t always access treatment.
enthusiasm about new treatments
Ruxolitinib (Opzelura) may soon become the gold standard for vitiligo treatment. It is a type of medicine known as a JAK inhibitor. It blocks JAK1 and JAK2, two enzymes that increase 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 in many people of color with vitiligo. While we didn’t have as much diversity in clinical trials as we would have liked, we are happy to report that it appears to work just as well for people with darker skin as it does for people with lighter skin. Works.
I see ruxolitinib as the start of a new wave of effective drug therapies. 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. Hopefully they will be even more effective than the topical version. I am also working to develop oremolimab, 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 anticipate that oremolimab will be a drug that people take for a month or two every year to maintain their new pigmentation.
While these advances help everyone with vitiligo, they will really benefit skin of color. People no longer have to rely on pigment-stripping drugs or taking time off from work to travel for UVB light therapy. If you may have rare treatments that require medication only a few months each year, this frees up a lot of time.
To treat or not to treat?
Some people of color decide not to treat their vitiligo. That’s absolutely fine! I simply told him that if his vitiligo spreads, it becomes difficult to treat later. This is especially true for areas with bony prominences, such as the hands and feet. One challenge I see among people with vitiligo is finding good cosmetic coverage if they want to camouflage their condition. Many conventional cosmetics you’ll find at the drugstore or department store may not cover vitiligo on darker skin tones well enough. There are a few companies that specialize in vitiligo coverage, but I recommend color matching people individually. If you guess it and order online it might not be exactly what you need.