Understanding Vitiligo: Psychosocial Impact, Early Diagnosis, and Evolving Treatment

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Welcome to Unscripted, The AMCP Podcast, a look inside managed care pharmacy. Listen in as experts explore the challenges, innovations, and opportunities shaping health care for millions of patients.

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This episode of Unscripted, The AMCP Podcast, is sponsored by AbbVie Inc. At AbbVie, we find answers that make life better for patients and our world. In this episode, we delve into vitiligo as a complex autoimmune disease, examining the significant psychosocial challenges and the importance of personalized treatment strategies. Join us as we explore, with Dr. Hamzavi, the interplay between medical advances, individualized patient needs, and the ongoing pursuit of comprehensive support for those living with vitiligo.

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Dr. Iltefat Hamzavi is a senior staff physician at Hamzavi Dermatology and Dermatology Specialists in Michigan. He's also a board-certified dermatologist at Henry Ford Hospital Department of Dermatology, and is a co-founder and former board chair of the Global Vitiligo Foundation. Welcome, Dr. Hamzavi.

Right. Thank you for having me once again. It's a pleasure. How about if you give us a quick background on vitiligo?

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Sure. Vitiligo is an autoimmune disease that affects anywhere from 0.6% to 1% of the world's population, in which they develop depigmented or white patches on the face, the hands, and other parts of the body due to the immune system destroying some cells in our skin called melanocytes. And it has a tremendous psychosocial impact because it's very disfiguring and is also associated with other autoimmune diseases like thyroid disease and type 1 diabetes and other conditions.

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And when you think about this, what does it actually do and what is it damaging? It's damaging the soul because it's damaging these color cells, and it affects your ability to interface with people in a socially appropriate fashion. So what is happening is that you can have depigmented patches anywhere on your body, but especially when it goes to the face and the hands where it's visualized, then it affects people's ability to interact in a social construct.

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So people with vitiligo tend to have a lot of shame. Not all of them, but about 75% to 80% will develop anxiety about their appearance, be worried about their clothing. The condition also progresses, so when you have one spot you can adapt to it, but when a new spot pops up and it keeps changing, it really affects your ability to engage with the public but also with yourself.

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And then when we track the mental impact of vitiligo, the rates of anxiety and depression are much, much higher than the general population in American and global populations. We think that, well, the skin is just superficial, while it's not. And just like any other scar, any other disfigurement, it causes a lot of psychosocial morbidity. And then the progression—where you're changing from time to time—also affects the ability to kind of become consistent with your appearance.

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And then there's also the association with internal autoimmune diseases. That's also a source of anxiety and concern. And when patients or individuals first discover they have this, how does that usually occur? What's the process with that? So they notice there's a spot. Sometimes it's itchy, and in about 20% of circumstances, sometimes they'll get a sunburn where they didn't think they would get a sunburn, or sometimes they'll just notice in the mirror or somebody will point it out.

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And so it's usually not noticed symptomatically; most people have it pointed out. But imagine when somebody points out somebody's defects publicly. It's, you know, there's a piece of ketchup on your lip, or there's a dot on your forehead, or there's, you know, sunscreen left over—those things are noticed by people.

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And they point it out. Same thing with vitiligo. So people say, well, there's something on your face. They try to wipe it away. It doesn't go away. And is it usually picked up fairly early, or is there a delayed diagnosis in terms of seeing their primary care physician or some other specialist? It takes about two and a half years to get diagnosed because most people don't know what it is.

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Or if they do know what it is, they hope it'll go away. But it takes about two and a half years for the average person who has vitiligo to get diagnosed with it. And then once that's done, is this something they really should be going to see a specialist about? They should be. And primary care doctors—

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we're doing our best to educate them—but they're often a great resource. But that first engagement is critical because in a recent survey, most primary care doctors have told their patients that there's nothing you can do, and that puts them into a very negative loop. But if they can treat that themselves, or they can refer to the appropriate specialist, then really you can treat any autoimmune disease—but especially vitiligo—the better you are to prevent progression.

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So that delay in diagnosis, that delay in referral, will ultimately cause a worsening of the prognosis. You talk about the impact on the individual, on themselves, and having people talk about it or point it out and things like that. I assume that impacts the quality of life and really is a burden to them. Is this something you're really looking to develop some counseling for as you treat this?

Well, Fred, I think you hit the nail on the head. Vitiligo isn't just a medicine to treat a condition; it's also acceptance in society. So it's a psychosocial disease. So you can treat the immunology with the appropriate treatment. But you also have to build acceptance into society to educate them about what the condition is. The way Michael Jackson was treated, when people didn't really know what it was, is not the type of society you want to be part of.

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So the more we know about it and how it's not contagious and how that acceptance will help people cope with it, that's part of the treatment. And societal support groups such as “Be Strong” or “Vitiligo Friends” or other groups such as those, as well as the support groups affiliated with the Global Vitiligo Foundation, are a critical resource. And globally, we have patient support groups as well, and when those patient support groups engage, it helps individuals with vitiligo cope.

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And then the treatment is another way to manage the condition, but you have to do both. So can you introduce us to the treatments and types of approaches? Yeah. So first off, you have to know the different types of vitiligo. So there's two main types: segmental, which is only in one part of the body, and non-segmental, which affects both sides of the body.

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And segmental comes on, and you can treat it the same way as non-segmental in the first 12 months. But after 12 months you really have to consider a form of surgery to treat that. Non-segmental vitiligo is the one that affects about 85% of the individuals with vitiligo. In that particular condition, it depends on which phase you're in. So if you're in a localized phase, with one spot on the face or the torso,

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you can treat that with a variety of creams. And we recently have had advances in those options. And if those creams are not working, or you have larger areas, or you're getting new spots, then you can treat individuals with light treatments. And in some individuals who have very specific clinical features, their vitiligo is very likely to progress to cover their entire body surface.

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And those individuals, we tend to treat with oral medications or injectable medications to supplement the light treatments and the creams. So you have these four options: topical treatments (creams), phototherapy (localized forms of UV light that are safe to use on the skin), then you have oral treatments that can be effective, and then for the non-segmental patients you get the combination therapy. For segmental patients you have the option of surgery if the medical treatments don't work.

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And I believe when we were talking earlier you mentioned the fact that each person is different and how they respond to living with this condition is different. Yeah. So some people, all they want is some camouflage. Some people will like to use a sunless tan, or if you're an intermediate skin tone you can get by with that, and that's enough.

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Some people, regardless of their skin type, are so bothered by the condition they need more aggressive modalities. And then some people just want to know what it is, and they need that societal acceptance. So it's one of the joys in medicine in the sense that there's no cookie-cutter approach. We have a menu, we have an à la carte menu, but we can apply that menu to the individuals in front of us, and it fits many people.

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Everything connects with our patients because the person in front of you— and that person has a range of behaviors, a range of responses. But you can anticipate those just by knowing basic information about vitiligo and how to care for those individuals. And you mentioned earlier autoimmune diseases. Can you discuss its association with others? Yeah. So the most common autoimmune disease associated with vitiligo is thyroid disease. Anywhere from 14% to 25% of patients over a ten-year period of time with vitiligo will develop thyroid disease.

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So we often encourage people to get a thyroid test every three years or so just to check if that's happening. Then after that, about 1% or more of the vitiligo patients can get a variety of other autoimmune diseases. So sensorineural hearing loss can occur in about 10% to 25%, but functional hearing loss, where you're actually not able to hear and respond to commands, probably occurs in less than 5%.

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And then there's other conditions which are much more common in the larger population, like type 1 diabetes, like certain forms of autoimmune neurologic diseases, lupus, kidney issues, eye issues—those are much more common than in the general population, but they don't generally break 1%. So I tell people: with thyroid disease, you've got to monitor; you've got to check your hearing.

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And if that's a problem, then get that evaluated. The other conditions, yes, it's a factor, but we don't really chase those unless you have symptoms. But if you have unusual symptoms, your doctor or your dermatologist should know that you have these symptoms so they can help figure out what's going on. But I also don't want 99% of patients with vitiligo to feel that they're going to have an autoimmune crisis.

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That's not likely to happen. It's just something to be aware of. And where are we with the prevention of progression with this illness? We are making so much progress that I never thought I would see in my career. I used to see young people or older people and my heart would break a little bit because I knew what the future would look like for them.

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Nowadays, the future is a little cloudy because it's so bright, because now, rather than being a dark future, if you intervene early enough to prevent progression—and even in advanced cases nowadays, with combination therapy, we can dramatically repigment individuals—and ultimately that burden on society and on that individual is being attenuated, because if we intervene early enough, we can give them a wonderful existence and really manage a lot of comorbidities that they don't have to deal with.

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So it's bright, and it's only getting brighter. But it will only get better if we educate people across the entire medical system. Well, that's a fantastic way to end this segment. Dr. Hamzavi, I'd like to thank you for joining us. Thank you for having me, Fred. I hope you have a good day. You too. And thank you for listening to this episode of Unscripted, The AMCP Podcast.

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This episode was sponsored by AbbVie Inc. For more information, visit AbbVie.com.