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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. Iltefat Hamzavi, the interplay between medical advances, individualized patient needs. The ongoing pursuit of comprehensive support for those living with vitiligo. Dr. Hamzavi is a senior staff physician at Hamzavi Dermatology and dermatology specialist 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. Fred, thank you for having me. Once again, it's a pleasure. How about if you give us a quick background on vitiligo?
Sure. Vitiligo is an autoimmune disease that affects anywhere from 0.6 to around 1% of the world's population in which they develop de pigmented or white patches on the face and the hands and other parts of the body due to the immune system destroying some cells in our skin called the 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 one diabetes and other conditions.
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. What ends up happening is that you can have depigmented patches anywhere in 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.
So people, with vitiligo tend to have a lot of shame. Not all of them, but around 75, 80% will develop anxiety about their appearance. They'll be worried about the 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.
And then when we track the mental impact of vitiligo, the rates of anxiety, depression are much, much higher than the general population in Americans and global populations. We think that, well, the skin's just superficial. Well, it's not. And uh, 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 your ability to kind of become consistent with our appearance.
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 a spot, um, sometimes it's itchy 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 it in the mirror or somebody will point it out and uh, and so it's usually not noticed symptomatically. Most people have it pointed out. But imagine when somebody points out somebody defects publicly. It's. You know, there's a piece of ketchup on your, on your lip, or there's, um, a, a dye on your forehead, or there's, you know, sunscreen leftover.
Like those things are noticed by people and they point it out. Same thing with vitiligo. So people say, well, there's something in your face. They try to wipe it away and it doesn't go away. And is it usually picked up fairly early or delayed diagnosis in terms of seeing their primary care physician or some other specialist? It's takes about two and a half years to get diagnosed because most people don't know what it is, or if they do know what it is, they hope it'll go away.
Um, 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, um, and primary care doctors, um, 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 the appropriate specialist, the earlier you can treat any autoimmune disease, but especially with vitiligo, the better you are to prevent progression.
So that delay in diagnosis, that delay in referral, will ultimately cause a worsening of the prognosis. You talk about the, um, impact on the individual and themselves and having people talk about or point out and things like that. I assume that impacts their quality of life and really is a burden to them. Is this something you're really looking to develop some counseling set up with 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. Isn't the type of society we wanna be part of.
So the more we know about it and how it's not contagious and how the acceptance will help people cope with it, that's part of the treatment. And societal support groups such as V Strong or VITFriends or other groups such as those, as well as the support groups that affiliated with the Global Vitiligo Foundation, they're a critical resource. And globally we have groups like VIPOC that when the patient support groups engage.
It helps individuals with vitiligo cope and then the treatment is another way to manage the condition, but you have to do both. So can you introduce us to the treatment and types of approaches? Yeah, so, um, 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 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 one. Non-segmental the one that affects about 85% of the individuals with the vitiligo in that particular condition. It depends on which phase. So if you're in a localized phase, one spot in the hand, one spot on the face of the torso, you can treat that with a variety of creams. And we recently have had recent 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 service. And those individuals, we tend to treat those with oral medications or injectable medications to supplement with light treatments and the creams. So you have these four options, topical treatments, creams.
Phototherapy localized forms of UV light that's safe to use in the skin. Then you have oral treatments that can be effective. And then for the nons segmental patients, you have the combination therapy for segmental patients. You have the option of surgery if the medical treatments don't work. And, 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 tanner. If you're an intermediate skin tone, you can get by with that and that's enough. Some people, regardless of their skin type or so bothered by the condition, they need more aggressive modalities. And then some people just wanna know what it is and they need that societal acceptance. So it's one of the joys of medicine in the sense that. There's no cookie cutter approach. We have a menu.
We have an a la carte menu, but we can apply that menu to the individuals in front of us, and it makes us really feel everything connect with our patients because they're a 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 a basic amount of information about vitiligo and how to care for those individuals. And you mentioned earlier autoimmune diseases, and could 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 10 year period of time. With vitiligo, will develop thyroid disease, 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 vitiligo patients can get a variety of other autoimmune diseases. So sensorineural hearing loss, hearing loss, uh, can occur in about 10 to 25%.
But functional hearing loss where we're actually not able to hear and respond to commands, that probably occurs less than 5%. And then these other conditions which are much more common in the vitiligo population, like type one diabetes, like certain forms of autoimmune neurologic diseases. Lupus, kidney issues, eye issues, those are much more common than the general population, but they don't generally break 1%.
So I tell people with vitiligo is: thyroid disease, you gotta monitor, you gotta check your hearing, and if that's a problem, then get that evaluated. The other conditions, yes, they're 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, help figure out what's going on.
But I also don't want 99% of patients with vitiligo to feel that they're gonna have a autoimmune crisis. 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, and, and I would, in my heart, it would break a little bit because I knew what the future would look like for them.
Nowadays the future's 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 advanced cases, nowadays with combination therapy, we can dramatically re pigment individuals. And ultimately that burden on society and in 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.
So it's bright, it's gonna get even brighter. But it'll 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. This episode was sponsored by AbbVie Inc. For more information about AbbVie, go to abbvie.com.