By Roopal V. Kundu, MD, as reported to Keri Wiginton
Vitiligo is an autoimmune disease that causes areas of skin to lose color or pigment. It is not only visible to others. You can see it in yourself. And I’m always talking to people about how this skin condition is affecting their self-image. It can also affect your ability to find work, meet a significant other, or connect with others.
There are ways to treat Vitiligo and improve your quality of life. However, access to treatment has been an ongoing problem, particularly for people with colored skin. I am confident that this will change soon.
Earlier this year, the FDA approved the first at-home treatment for vitiligo. It is a skin cream sold under the brand name Opzelura. The generic name is ruxolitinib. It is a topical Janus kinase inhibitor, a class of drugs that target part of the immune system involved in vitiligo.
This drug is a breakthrough for many reasons. A big part is the medicine itself. It gives us one more tool in our toolbox besides using systemic and topical steroids, light therapy, other immune system drugs that you apply to your skin, and depigmentation (if you’re removing skin tone from darker areas remove).
FDA approval is also crucial. It means more time and resources are invested in understanding and treating vitiligo. Doctors also don’t have to prescribe ruxolitinib off-label for vitiligo, meaning people may find it easier to get their insurance provider to pay for it.
All of this is great news for the millions of people living with Vitiligo. But I would argue that those with colored skin might see the greatest benefit.
It affects people of all races about equally, but is more noticeable in darker skin. Unfortunately, blacks and browns are less likely than other groups to receive 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 issue and not a disease. And they will deny reporting 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, too many people have asked me for help after another doctor told them there were no treatments or no therapy would work.
That’s why this FDA approval is so important. It gives us the opportunity to highlight this new drug. But at the same time we can educate doctors and medical staff about the other treatments we already have.
As a result, I hope that in 2 years there will be far fewer people with vitiligo leaving the doctor without treatment.
But if someone tells you there are no options, get a second opinion. Keep looking until you find a doctor to connect with. If possible, see someone who is known in the vitiligo field. For some people, this could mean seeking out a dermatologist who specializes in colored skin.
It can be a great challenge for anyone to accept this condition on a personal level. And the fair-skinned people I treat are often just as upset about their vitiligo as they are
those with darker skin. But the lived experience between the two groups can be very different.
To the outside world, vitiligo is more obvious in people of color. This is simply because dark and light pigments contrast more. And then there’s the added layer of how important the concept of skin color is to our function and identity, especially in the US
Stigma can also differ between cultures. For example, in some parts of the world, people are more likely to confuse vitiligo with leprosy, a bacterial skin infection.
There can also be a stigma attached to certain treatments. Take depigmentation for example. It’s a years-long process to blend skin tone by lightening dark spots. It’s something we can try when a treatment to restore pigmentation doesn’t work or isn’t possible.
For people in the depigmentation group, I often raise the issue of colorism. That’s when people place different values on a person’s skin tone. And sometimes people tell me that when they lose their color, their relationships change. This often happens with the people closest and dearest to them.
I don’t want to lump everyone with darker skin into one group. But as a community, people of color have historically been underserved and marginalized. And with regard to equal opportunities in health care, including in dermatology, there is still a long way to go. But I think we’re moving in a more thoughtful direction.
For example, we are increasingly thinking about culturally competent support. Then doctors or hospitals take special steps to address racial and ethnic health disparities. And there is a greater focus on including race in research and medical education for our students and physicians.
We’re also seeing a growing number of clinics that we call “skin of color.” You’ve probably heard of a women’s clinic. It’s the same idea but with a vested interest in treating darker skin.
We currently only have a handful of treatments. None of which can bring the pigment back with certainty. But I think there will be more discoveries in the future. Ideally, this leads to better treatments that produce a lasting effect over time. Because we’re still working on that.
I also think that the new status of ruxolitinib for vitiligo will stimulate further conversations 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. This is part of our ongoing learning as physicians. And this exposure is very important for a disease that has never had this conversation before.
We learn a lot about Vitiligo and the immune pathways involved. This makes the treatments a little more specific. I expect our understanding of vitiligo will continue to grow as we have more clinical trials and research.
Roopal V. Kundu, MD, is a professor of dermatology and medical education at Northwestern University’s Feinberg School of Medicine. Kundu specializes in researching and treating conditions that affect colored skin. She is the founding director of the Northwestern Center of Ethnic Skin and Hair.