By John Harris, MD, as told to Hallie Levine
I’ve been a vitiligo researcher for almost 20 years. While it affects people of all races and ethnicities equally, it’s more visible in people with darker skin tones. As a result, they may be more self-conscious about it or experience more social stigma. But what I tell people is there’s never been a more exciting time when it comes to vitiligo treatment. Last July, the FDA approved ruxolitinib (Opzelura) as the first-ever medication to restore pigment in people with vitiligo. More drugs are in the pipeline. I’m hoping some of these will prove to be game-changers for people of color who have vitiligo.
The Challenges of Finding Treatment
Historically, dermatologists have dismissed vitiligo as just a cosmetic concern. I’ve had many people come to me in desperation after they’ve gone through five or six other dermatologists who have told them their condition is just not a big deal. But research shows that people of color have a more negative attitude toward their vitiligo than those with lighter skin. This may be because in certain cultures, like some in South Asia or Africa, there’s 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 darker-skinned people are often more impacted by vitiligo than lighter-skinned ones, their quality of life may suffer even more.
In addition, some of the early medications 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 drug works to depigment skin, and it does that 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 a lot of social implications. Take Michael Jackson, for example, who went public about his vitiligo and whose autopsy results reveal he used monobenzone. People accused him of wanting to be white and said he was ashamed to be Black. But he wasn’t. He was just trying to treat his vitiligo.
Some of the other therapies we have, like UVB phototherapy, haven’t been much better. While UVB phototherapy works well, it can be very challenging to access. You have to drive 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 work or find child care, then they can’t always access treatment.
The Excitement About New Treatments
Ruxolitinib (Opzelura) may soon become the gold standard of treatment for vitiligo. It’s 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’m very optimistic that it will work well in many people of color who have vitiligo. While we didn’t have as much diversity in the clinical trials as we would have liked, we were happy to report that it seems to work just as well for dark-skinned people as it does for light-skinned ones.
I see ruxolitinib as just the start of a new wave of effective drug treatments. Ruxolitinib is applied as a cream and is limited to just 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 they will be even more effective than the topical version. I’m 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’ll relapse. We hope that auremolimab will be a medication people take for a month or two 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-stripping drugs or taking time off work to travel for UVB light therapy. If you can have infrequent treatments that only require medication a couple of months each year, it 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 OK! I just let them know that if their vitiligo spreads, it becomes harder to treat later. This is especially true for areas with bony prominences, like hands and feet. The one challenge I see among people with vitiligo is finding good cosmetic coverage if they do want to camouflage their condition. A lot of conventional cosmetics that you’d find in a drugstore or department store can’t cover up vitiligo on darker skin very well. There are some companies that specialize in vitiligo coverage, but I do advise people to have a color match done in person. It may not be exactly what you need if you guess on it and order online.