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Key Takeaways on Vitiligo Management
May 24, 2023
Seemal R. Desai, MD
Heather Woolery-Lloyd, MD
Expert dermatologists share final thoughts on treatment of vitiligo and topical ruxolitinib.
Seemal Desai, MD:So, this has been a tour de force of an amazing discussion. In the last few minutes let's get some sort of final parting thoughts and, really, I would love to have your thoughts about where we are in our disease state understanding, anything we talked about clinically, and kind of your hopes and dreams for the future of this disease and, really, for skin disease. We know that there are so many skin diseases out there that we treat that don't have FDA-approved therapies. Ted, I'm going to start with you. I'd love to have some final few minutes of your thoughts.
Ted Lain, MD:Thank you. What a wonderful panel, and Dr Desai, thank you so much for leading us. It was really a very thought-provoking discussion. I learned a lot personally, so thank you to everybody here. I do want to say as a principal investigator, as someone who runs quite a few of these vitiligo trials, recruitment can be difficult. For those people who are watching this, if you don't mind helping the local sites out with recruitment because we all want to get these drugs in the hands of our patients as quickly as possible. Some of the latest medications that are available are in clinical trials right now. Using the investigational sites in your area can be helpful, and for those of us who are really trying to get the latest, we rely on you. So that's one thing I would say, thank you for letting me do that. Otherwise, I think the topical ruxolitinib is a wonderful first step in treatment for an autoimmune disease that has sorely needed something particularly for itself. I'm so happy that we – as I said, that ruxolitinib, has opened the door and now there are so many others that are in development. I think that what we'll see is similar to what we've seen in psoriasis. We're now kind of experiencing an atopic dermatitis, where there's just going to be a rush of highly efficacious treatments that will both systemically and topically allow us to treat the entire patient and really elevate their quality of life, which is what is most important.
Seemal Desai, MD:I love that. Heather?
Heather Woolery-Lloyd, MD: I would say my biggest take home – first of all, this has been such a wonderful panel. Like you, I learned from everyone and thank you for moderating this. I think it’s a very exciting time to be treating patients with vitiligo. I’ve been treating vitiligo for 20 years and I will say, as I mentioned, it was hard when patients – 10, 15 years later, there really was nothing new. There really was nothing new for so long and so this is a very exciting time. I'm very hopeful, optimistic, excited to see the results from the newer trials that come out, and, like you said, we're going to get not just 1 new FDA-approved treatment, but I'm sure in the future, many. That will be such a change for a disease that I feel like was neglected for many decades.
Seemal Desai, MD:Heather, let me just ask you, since you are really engaged with social media and getting the right messages out there, have you really found that social media has been a wonderful way to talk about vitiligo? Hasn't that been your experience because you've done some great work on that?
Heather Woolery-Lloyd, MD:Yes, so I do think social media is great for rare diseases because, although vitiligo really isn't rare – it's actually not that rare – but for diseases that people don't talk about much, I think patients can feel very isolated. If you're a vitiligo patient and you feel isolated, you might have 1 family member, a distant family member, who has it, but you might not have anyone else to talk about it with. One of the biggest impacts I think social media has is that it allows people to connect and to share things that even us as physicians wouldn't be able to share: the best textured make-up, the best – what lasts longer? What doesn't rinse off in the pool? Those types of things are the things that you can learn on social media. From a physician standpoint, I really do try to make an effort to do a lot of education so that they're getting the correct information and not the old wives’ tales and remedies that have no data and no proof. From our perspective as physicians we can give, create content that's accurate and valid and also introduce new concepts because this new topical has just been introduced in the last year, so for people who haven't seen their dermatologist, they got burnt out and haven't been in in 2 years then say, “Oh there is a new treatment now, let me go and make an appointment with my dermatologist.” I think social media plays 2 roles from our perspective and a role in education. From a patient's perspective, it's a way to connect with other people and really get further insights beyond what we can offer our patients.
Seemal Desai, MD:I just have to say kudos to you, and Brittany, and Nada, and Ted, all of you guys who do that to put out the right messages about board-certified dermatologists and sending the right messages because there are influencers out there who aren't medical professionals who are giving the wrong information to our patients. Many of our organizations that we're all a part of have really championed this. The AAD [American Academy of Dermatology] has an incredible “Your Dermatologist Knows” social media campaign that started in the past few months. It's been incredible because we have to really band together to get the right info out there so then patients know what the right question is to ask, when to seek treatment, and when to have hope. Brittany, would love some of your final thoughts.
Brittany Craiglow, MD:I feel like so many – I agree with everything really that's been said already. I do really feel optimistic that in, right now lots of patients come and maybe they come to see me for something else, and they have vitiligo and I'll say, “Oh have you treated that,” and the patient says, “Oh no, I've been told there's nothing to do for it over and over.” They've sought treatment and somebody said, “It's no big deal, that's cosmetic,” patients have felt dismissed. I really do think that that tide is changing. With an approved therapy there's all this awareness now that this is an autoimmune disease. It's just like anything else we see, and it really warrants treatment. With the advances in the scientific understanding, we now have a pathogenesis-directed treatment. I really think in 5 or 10 years that patient experience is going to be very different. We're going to have multiple fairly reliable and effective therapies. We also are going to have patients who are coming in earlier, and probably going to do better, because they're getting treated at the beginning of their disease, rather than 20 years down the road where it's going to be a lot harder to repigment them. This longstanding vitiligo may be something that slowly kind of goes away over time, which is kind of exciting.
Seemal Desai, MD: Super exciting. I am optimistic that we will have a cure for vitiligo in our lifetime. I'm really optimistic of that so we're going to hopefully keep going for that. Nada, what would you say? You're so passionate, like me, about this.
Nada Elbuluk, MD:Absolutely. This has been an amazing panel. I echo what everybody said. I think the exciting thing is that as we're understanding the pathogenesis more we are going to have more of these targeted therapies. Similar to what Ted was saying, the way we see that the treatments are blossoming for psoriasis and atopic dermatitis, I think vitiligo is next in line. Ruxolitinib is the beginning of that, and it's not just topical and oral medications, but procedural therapies. The transplantation process for vitiligo used to be quite involved and there's a treatment that's in studies right now that once that gets approved will allow people to do procedural therapies in their office much easier than before. I think the other really exciting thing is seeing the voice of individuals with vitiligo really getting amplified, and seeing public representation of vitiligo increase. We're really seeing that help decrease the stigma that comes with the disease. Winnie Harlow was one of the first people to kind of really come out and model without her makeup. That was a huge statement for people with vitiligo that, “I can do this, and I can feel good about myself, and I know that I look great and not feel that I have to have hide- behind makeup or anything else.” Mattel came out with the Barbie. There are dolls with vitiligo, CoverGirl hired their first model with vitiligo, “Call of Duty” now has a character with vitiligo. So, just across all these sectors of society, this public representation is huge, and I think it's so important for us to be able to advocate and support our patients in every regard for getting treatments, but also for not getting stigmatized for their disease and making the public know what is and be educated about it. I think there's a movement happening all in the right direction and it's very exciting to see.
Seemal Desai, MD:I couldn't agree with all of you more. I think now is just such an incredible time. This has been a fantastic panel. I am so hopeful about vitiligo treatments for our patients. I hope we'll be able to have the opportunity to do more of these discussions in the very near future. I'm sure we're going to be having lots more scientific data that's going to be rich and fulfilling for us to be able to share for our patients. So, Dr Lain, Dr Woolery-Lloyd, Dr Craiglow, Dr Elbuluk, thank you for joining me. It's really been a pleasure to be with you all today for this exciting discussion and thank you all for watching this HCPLivePeer Exchange. If you enjoyed the content, please subscribe for our e-newsletters and to view upcoming peer exchanges and other great content right to your inbox, make sure you visit HCPLive.com. I'm Dr Seemal Desai. It's been my pleasure to be your chair and moderator for today's discussion. Thank you for joining us.
所以，这是一场精彩讨论的杰作。在最后的几分钟里，让我们得到一些最后的想法，真的，我很想知道你对我们疾病状态理解的想法，我们在临床上谈论的任何事情，以及你对这种疾病的未来的希望和梦想，真的，对皮肤病的希望和梦想。我们知道有很多我们治疗的皮肤病没有FDA批准的疗法。泰德，我要从你开始。我想听听你最后几分钟的想法。医学博士泰德·莱恩:
谢谢你。多棒的小组啊，德赛博士，非常感谢你带领我们。这真是一场非常发人深省的讨论。我个人学到了很多，所以谢谢这里的每一个人。作为一名首席研究员，我想说的是，作为一个进行了很多白癜风试验的人，招募是很困难的。对于那些正在看这个的人来说，如果你不介意帮助当地的网站进行招募，因为我们都希望尽快将这些药物送到我们的患者手中。一些最新的药物正在临床试验中。使用你所在地区的研究场所会有所帮助，对于我们这些真正想获得最新信息的人来说，我们依赖你。所以我想说的是，谢谢你让我这么做。否则，我认为局部ruxolitinib是治疗自身免疫性疾病的一个很好的第一步，这种疾病本身特别需要一些东西。我很高兴我们——正如我所说的，ruxolitinib已经打开了大门，现在还有许多其他药物正在开发中。我认为我们将会看到的和我们在牛皮癣中看到的相似。我们现在正在经历一种特应性皮炎，在这种情况下，将会出现一系列高效的治疗方法，使我们能够全身和局部治疗整个患者，并真正提高他们的生活质量，这是最重要的。医学博士Seemal Desai:
我喜欢这样。希瑟。希瑟·伍勒里-劳埃德，医学博士
:我想说我最大的收获——首先，这是一个非常棒的面板。像你一样，我从每个人那里学到了东西，谢谢你的主持。我认为治疗白癜风患者是一个非常激动人心的时刻。我已经治疗白癜风20年了，我要说的是，正如我提到的，当患者——10、15年后，真的没有什么新的东西时，这是很难的。这么长时间以来真的没有什么新东西，所以这是一个非常令人兴奋的时刻。我非常有希望，乐观，兴奋地看到新的试验结果出来，就像你说的，我们将不仅得到一个新的FDA批准的治疗，但我相信在未来，很多。对于一种我觉得被忽视了几十年的疾病来说，这将是一个巨大的变化。医学博士Seemal Desai:
Heather，让我问你，既然你真的参与了社交媒体并获得了正确的信息，你真的发现社交媒体是谈论白癜风的一种很好的方式吗？这难道不是你的经历吗，因为你在这方面做了一些伟大的工作？希瑟·伍勒里-劳埃德，医学博士:
是的，所以我确实认为社交媒体对罕见疾病很有帮助，因为尽管白癜风真的不罕见——它实际上并不罕见——但对于人们不太谈论的疾病，我认为患者会感到非常孤立。如果你是一名白癜风患者，你感到孤独，你可能有一个家庭成员，一个远房的家庭成员，患有白癜风，但是你可能没有其他人可以谈论它。我认为社交媒体最大的影响之一是它允许人们联系和分享即使是我们作为医生也无法分享的东西:最好的质地化妆品，最好的——什么更持久？什么东西在池子里洗不掉？这些类型的事情是你可以在社交媒体上了解到的。从医生的角度来看，我真的努力做了很多教育，让他们得到正确的信息，而不是没有数据和证据的老妇人的故事和补救措施。从我们作为医生的角度来看，我们可以提供、创建准确有效的内容，并引入新概念，因为这种新的主题在去年刚刚推出，所以对于那些没有看过皮肤科医生的人来说，他们已经筋疲力尽，两年没有去过了，然后说，“哦，现在有一种新的治疗方法，让我去预约我的皮肤科医生。”我认为社交媒体在我们看来扮演着两个角色，一个是教育角色。从患者的角度来看，这是一种与他人联系的方式，并真正获得超出我们能为患者提供的更多见解。医学博士Seemal Desai:
我不得不称赞你，布列塔尼，娜达，泰德，你们所有的人都这么做了，来发布关于委员会认证的皮肤科医生的正确信息，并发出正确的信息，因为有一些有影响力的人，他们不是医疗专业人员，却给我们的病人提供了错误的信息。我们所在的许多组织都非常拥护这一点。AAD[美国皮肤病学会]在过去几个月里发起了一个令人难以置信的“你的皮肤科医生知道”社交媒体活动。这是不可思议的，因为我们必须真正团结起来，获得正确的信息，这样病人就知道应该问什么问题，什么时候寻求治疗，什么时候有希望。布里特妮，想听听你最后的想法。布里特妮·克雷格洛，医学博士:
我感觉像很多人一样——我真的同意已经说过的一切。我真的很乐观，现在很多病人来找我，也许他们是因为别的原因来看我，他们有白癜风，我会说，“哦，你治疗过吗，”病人说，“哦，不，我一次又一次地被告知没有什么可做的。”他们寻求治疗，有人说，“没什么大不了的，那是整容，”患者感到被忽视了。我真的认为潮流正在改变。有了一种被认可的疗法，现在大家都意识到这是一种自身免疫性疾病。它就像我们看到的其他任何东西一样，确实值得治疗。随着科学认识的进步，我们现在有了针对发病机制的治疗方法。我真的认为在5年或10年后，患者的体验将会非常不同。我们将有多种相当可靠和有效的疗法。我们还将有更早来的患者，他们可能会做得更好，因为他们在疾病开始时就得到治疗，而不是20年后再给他们重新着色会困难得多。这种长期存在的白癜风可能会随着时间的推移慢慢消失，这是令人兴奋的。医学博士塞马尔·德赛
:超级刺激。我乐观地认为，在我们有生之年，我们将找到治愈白癜风的方法。我对此非常乐观，所以我们希望能继续努力。没有，你会说什么？你和我一样对此充满热情。医学博士Nada Elbuluk:绝对的。这是一个令人惊讶的小组。我附和每个人说的话。我认为令人兴奋的是，随着我们对发病机理的了解越来越多，我们将会有更多的靶向治疗。类似于Ted所说的，我们看到银屑病和特应性皮炎的治疗方法正在蓬勃发展，我认为白癜风是下一个。Ruxolitinib是这方面的开始，它不仅仅是局部和口服药物，而是程序性治疗。白癜风的移植过程曾经相当复杂，现在有一种治疗方法正在研究中，一旦获得批准，人们就可以在办公室里比以前更容易地进行程序性治疗。我认为另一件令人兴奋的事情是看到白癜风患者的声音被放大了，看到公众对白癜风的关注增加了。我们真的看到这有助于减少疾病带来的耻辱。温妮·哈洛是第一个真正素颜出柜做模特的人。对于白癜风患者来说，这是一个巨大的声明，我可以做到这一点，我可以自我感觉良好，我知道我看起来很棒，而不是觉得我必须化妆或做其他事情。美泰推出了芭比娃娃。有患有白癜风的娃娃，封面女郎聘请了他们的第一个患有白癜风的模特，《使命召唤》现在有一个患有白癜风的角色。所以，在社会的所有这些部门中，这种公众代表性是巨大的，我认为对我们来说，能够从各个方面倡导和支持我们的患者获得治疗是非常重要的，但也是为了不因为他们的疾病而被污名化，并让公众知道什么是疾病并接受相关教育。我认为有一场运动正在朝着正确的方向发展，这非常令人兴奋。
医学博士Seemal Desai:我完全同意你们所有人的观点。我认为现在是一个不可思议的时刻。这是一个奇妙的小组。我对我们患者的白癜风治疗充满希望。我希望在不久的将来，我们能够有机会进行更多这样的讨论。我确信我们将会有更多的科学数据，这些数据将会丰富多彩，让我们能够与我们的患者分享。所以，莱恩博士，伍尔利-劳埃德博士，克雷洛博士，埃尔布鲁博士，感谢你们的参与。很高兴今天能和大家一起参加这次激动人心的讨论，感谢大家观看此次HCPLive同行交流。如果您喜欢这些内容，请订阅我们的电子通讯，并在您的收件箱中查看即将到来的同行交流和其他精彩内容，请务必访问HCPLive.com。我是西马·德赛医生。我很高兴成为你们今天讨论的主持人。谢谢你加入我们。
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发表于 2023-6-9 21:55:33
楼主
