By Roopal V. Kundu, MD, as told to Keri Wiginton
Vitiligo is an autoimmune condition that causes areas of skin to lose color or pigment. It isn’t just visible to others. You can see it on yourself. And I talk with people all the time about how this skin condition affects their self-image. It can also take a toll on your ability to find work, meet a life partner, or connect with others.
There are ways to manage vitiligo and boost your quality of life. But access to treatment has been an ongoing problem, especially for people with skin of color. I’m hopeful that’s about to change.
Earlier this year, the FDA approved the first at-home treatment for vitiligo. It’s a skin cream sold under the brand name Opzelura. The generic name is ruxolitinib. It’s a topical Janus Kinase inhibitor, a class of drugs that target a part of the immune system involved in vitiligo.
This drug is a breakthrough for many reasons. One big part is the medicine itself. It gives us another tool in our toolbox outside of using systemic and topical steroids, light therapies, other immune system drugs you put on your skin, and depigmentation (when you remove skin color from darker areas).
FDA approval is also key. It means there will be more time and resources put into understanding and treating vitiligo. Doctors also don’t have to prescribe ruxolitinib off-label for vitiligo, which means people may have an easier time getting their insurance provider to pay for it.
All of this is great news for the millions of people who live with vitiligo. But I’d argue that those with skin of color may see the biggest benefit.
How Vitiligo Differs in People of Color
It affects people of all races at about the same rate but is more noticeable on darker skin. Unfortunately, Black and Brown people are less likely than other groups to get the care they need.
First, people of color generally have less access to health insurance. Second, they may not have the type of health plan that will approve and pay for vitiligo treatment. That’s because many insurance plans consider this a cosmetic problem – not a medical condition. And they’ll deny coverage based on that.
But less access to quality health insurance isn’t the only problem. Not every provider has experience treating vitiligo. And in my own practice, one to many people have come to me for help after another doctor told them there weren’t any treatments or no therapy would work.
That’s why this FDA approval is so vital. It gives us a chance to highlight this new drug. But at the same time, we can re-educate doctors and health care workers about the other treatments we already have.
As a result, I hope that 2 years from now, there will be a lot fewer people with vitiligo leaving the doctor without treatment.
But if someone tells you there are no options, get a second opinion. Keep searching until you find a doctor you connect with. If possible, see someone well-known in the vitiligo space. For some people, that might mean looking for a dermatologist who specializes in skin of color.
The Stigma of Vitiligo
It can be a big challenge for anyone to accept this condition on a personal level. And the people I treat who have light skin are often just as upset by their vitiligo as
those with darker skin. But the lived experience between the two groups can be very different.
To the outside world, vitiligo is more obvious on people of color. That’s simply because there’s more of a contrast between dark and light pigments. And then, there’s the added layer of how important the concept of skin color is to our function and identity, particularly in the U.S.
Stigma may also differ between cultures. For instance, people in some parts of the world are more likely to confuse vitiligo with leprosy, which is a bacterial skin infection.
There may also be a stigma attached to certain treatments. Take depigmentation for example. That’s a years-long process to blend skin tone by lightening dark patches. It’s something we may try if treatment to regain pigment doesn’t work or isn’t possible.
For people in the depigmentation group, I often address the issue of colorism. That’s when people attach different values to the shade of someone’s skin. And sometimes people tell me their relationships change as they lose their coloring. This often happens with the people who are nearest and dearest to them.
Better Education Means Better Care
I don’t want to place everyone with darker skin into one group. But as a community, people of color have historically been underserved and marginalized. And there’s still a long way to go in terms of health care equity, including in dermatology. But I do think we’re headed towards a more thoughtful direction.
For instance, we’re thinking more about culturally competent care. That’s when doctors or hospitals take special steps to address racial and ethnic health disparities. And there’s more of a focus on including skin of color in research and medical education for our students and doctors.
We’re also seeing a growing number of what we call skin of color clinics. You’ve probably heard of a women’s health clinic. It’s the same idea but with a vested interest in treating darker skin.
What’s on the Horizon for Vitiligo Treatment?
We currently have only a handful of treatments. None of which can bring pigment back for sure. But I do think there will be more discoveries in the future. Ideally, this will lead to better treatments that give a sustained effect over time. Because that’s something we’re still working on.
I also think the new status of ruxolitinib for vitiligo will spur more talks among dermatologists. When we go to the American Academy of Dermatology conferences, we always talk about the new FDA-approved treatments that are out there. That’s part of our ongoing learning as doctors. And that exposure is very important for a disease that’s never had that conversation before.
We’re learning a lot about vitiligo and the immune pathways that are involved. As a result, treatments are becoming a little bit more specific. I expect our understanding of vitiligo will keep growing as we have more clinical trials and research.
Roopal V. Kundu, MD, is professor of dermatology and medical education at Northwestern University Feinberg School of Medicine. Kundu specializes in the research and treatment of conditions that affect skin of color. She is the founding director of the Northwestern Center of Ethnic Skin and Hair.
