Nada Elbuluk, MD, MSc, FAAD

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.

 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.

: 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.

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?

 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.

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.

 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.

: 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.

 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.

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 HCPLiveâPeer 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.

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Expert dermatologists share final thoughts on treatment of vitiligo and topical ruxolitinib. 

Key Takeaways on Vitiligo Management 

: So, Ted, we talked about access to therapy and wanting for clinicians and dermatologists to be able to get new treatments in the hands of their patients. Talk to me about some tips, tricks; ways that you've been able to motivate your patients and what can we share with our colleagues on access to therapies and how they can get some of these?

 I really think it all starts with documentation in the progress note. If you look at the endpoints for the clinical trials and who this cream is indicated for, this topical is indicated for, that will dictate how you should document in your chart as well. I document an f-VASI [facial vitiligo area scoring index], for example. I document a t-VASI [total vitiligo area scoring index]. It's not hard. It is the number of handprints, multiplied by the degree of pigmentation. So, for example, these patients in order to get in a clinical trial had to have an f-VASI [facial vitiligo area scoring index] of 0.5 % and they had to have at least, I believe, up to 10% and that's why the 10% is the cut off, up to 10% vitiligo in the rest of the body. If you understand that, then you can document appropriately in order to have the ammunition to go back to the payer to say, “Look, they meet criteria for this and by the way, this is the only thing that is FDA-approved for this indication. What do you want me to do?” So, I kind of go back with those 2 and then finally, we have a biologic coordinator. We have someone who, unfortunately, we pay in order to get these drugs approved, which is counterintuitive, but we do it anyway. That person is very good at utilizing all the promotions and rebates and the opportunities that the pharmaceutical companies provide in order for us to get these drugs into the hands of our patients.

That's a whole other multihour discussion because the amount of overhead that it costs our practices to have individuals like that, but guess what, if we don't then the patients aren't going to get the therapy. It's the unfortunate nature of the system we're in. Heather, what are some of your thoughts on this topic?

: So, I agree with everything that you said. The other thing that I really try to utilize are the patient assistance programs, because they're there for a reason. I think sometimes we underutilize them because “Oh, it wasn't covered, I'm so sorry,” but we really have to, in some ways, change gears and say it wasn't covered, but they also have a patient assistance program. A lot of times it's very simple; it's a one pager that you fill out and they send it in. They just basically disclose their income. Sometimes they request documentation, sometimes they don't, though. Sometimes they don't even request documentation. I think that we need to take much more advantage of that because that's there for us to use for those reasons. Instead of saying, “It's not covered, let's try something else,” I try my best to go with those patient assistance programs when I have difficulty with insurance.

I think that's a really good point because I will admit that sometimes when we're frustrated doing prior authorizations and after a really busy day and answering multiple call backs and path reports, etcetera, that's the last thing on my mind. You're absolutely right and probably that biologics coordinator or that 1 staff person in your office is the point. Do you all have a point person in your practices or at the university that helps? Brittany, do you have someone?

I sort of have one of my medical assistants who's become our de facto person and she does a great job. Nada, what about you?

 Yeah, we have a coordinator who helps in that role. I think it's been mentioned, it is very time consuming and so getting authorization is – it's a necessary thing we have to do, but unfortunately, it does take a lot of staff time and physician time to get our patients sometimes what they need.

: It makes sense. One thing that I wanted to mention earlier that we talked about, and I think coverage is a great place to put this, is there's been great papers. In fact, there was one that just came out in the literature last week that talked about dyslipidemia and metabolic syndrome and other systemic comorbidities with vitiligo. We have a form letter in our practice that if we get a denial, we just print out the form letter. I put it on a letterhead, I sign it, and we actually staple the PDF of these papers and send them to the insurance company. We'll still get denials and then I say, “Well did you get on the phone with the medical officer? Did you not read the paper that I just sent you?” This is a systemic disease. Have you any of you tried tactics like that?

: Absolutely, I've definitely sent papers to them. There's also a great one that was in the JAAD [Journal of the American Academy of Dermatology]; “Vitiligo is Not a Cosmetic Disease.” I love to send that paper when they send back the rejection because they're trying to call it cosmetic. The other thing, you and I are on the board of the Global Vitiligo Foundation and so we have letters that we've written on there, which can – so that you don't even have to go through all that work, that you can print. That basically will help you to try to get authorization for topicals. We have one now for ruxolitinib, we have for phototherapy, with citations included in the letter so that's just to help all the physicians out there with trying to get coverage for their patients.

So, I'm so glad you plugged the Global Vitiligo Foundation, and the Global Vitiligo Foundation is a non-profit so I'm just going to say, an incredible resource for clinicians and for patients. Support groups are very important in vitiligo. There are some amazing vitiligo support groups out there on Facebook, on social media. World Vitiligo Day is now highly organized and propelled forwards because of patients. If you have a patient who really wants to feel connected with other vitiligo patients, a great opportunity is through the support groups. I'd encourage everyone to send their patients to the Global Vitiligo Foundation website. Obviously, my conflict is I'm on the board of directors, so is Dr Elbuluk, but this is a nonprofit that's really designed to help advance our understanding of vitiligo and really empower patients. The patient voice is so important, especially as we continue to advocate for more NIH [National Institutes of Health] funding, for more research dollars and really wanting to advance the field of the disease.

Experts in dermatology comment on the need to promote access to emerging treatments in vitiligo.

Promoting Access to New Therapies in Vitiligo

Heather, patient education and counseling: I know you’re very passionate about really educating the patient. Tell me some of your pearls for educating about vitiligo repigmentation and the disease journey.

 We talked about this a little bit earlier and I tell them to expect those islands of re-pigmentation. Most of my patients are skin of color patients, so they definitely have these very prominent islands. I loved that you just mentioned that it might not look so great in the beginning, because it’s going from completely depigmented to speckled, and that becomes more obvious. We haven’t mentioned camouflage, but I do discuss camouflage with my patients. Men and women, but typically women, gravitate to that to cover up those changes as the skin is repigmenting. So, I set realistic expectations. Under promise, overdeliver. I can say with confidence that we can repigment your face. I really feel confident about that. I, again, talk about their expectations, and I do discuss camouflage because I do think that sometimes we forget that something very easy can give the patient a lot of confidence. In fact, they did a study that showed that camouflage makeup improved quality of life in vitiligo patients. While they’re getting better, they can use camouflage makeup.

I love that. Nada, any pearls on making sure they stay on the treatment? That they’re motivated to stay compliant?

 One of my big things that we do at every session, and it can be very time-consuming, but we take photographs of every single area of vitiligo that they have. When they come in, I pull up those photographs, and we look at each body site in comparison to the photo. And that’s very motivating for individuals because…a lot of times they’ll come in and they’re like, “I don’t know if I’m better”—and you actually look at the photos. This just happened last week in my practice; we looked, and there are entire patches that have repigmented. But they see themselves every day, so it’s hard for them to notice how much change is happening. They’re just going through this treatment; it’s exhausting, and they’re not able to appreciate the change that’s happening over the course of months. So, I find photos to be very helpful in keeping patients motivated and adherent. Once they see the change, they’re like, “OK, this is working. This is worth the struggle I’ve been going through with remembering this every day.” So, I really like photographs and then repeating what everyone said, being their cheerleader, supporting them and knowing that this is a marathon and that burnout from therapy is a real thing too. This is a chronic disease, so we do have to really work with our patients. Sometimes they’re in a phase of life where they just can’t come in for phototherapy, or they work a job that is nights and aren’t able to do certain things during the day. So, you have to work with them and figure out a way to make it manageable because if the treatment is stressful, that increases the anxiety and depression that can come with the disease too. So, it’s really a balance.

I’m so glad you mentioned that. We…as the doctor, have to be flexible with the patient. I had a patient just last week; he works for the UN [United Nations] as one of the lead humanitarian crisis experts. When the horrible earthquake happened in Turkey a few weeks ago, he had to go to Turkey, and he’s been in Turkey for a month and a half. Missed all his phototherapy. Now he comes back, and our light nurse is starting him back at the starting dose. So, he was frustrated. He’s like, “Why do I have to go through all this again?” So, we had to have a conversation. And when there’s the next world crisis that unfortunately may happen, he’ll probably have to go to that. We’re going to have to figure out a way that he’s still getting effective therapy, but we’re still managing it around that lifestyle. So yes, you’re right. I had to take a step back and say, “I have to think outside the box for you.” I’m glad you mentioned that.

Heather Woolery-Lloyd, MD, and Nada Elbuluk, MD, share approaches to patient education and managing patient expectations when repigmenting the skin in vitiligo.

Managing Vitiligo Patient Expectations 

This has been a phenomenal discussion. We’ve talked about pathophysiology, we talked about treatment, data, and safety. So, let’s round over to home base and talk a little bit about just promoting compliance and adherence, and that patient experience and patient journey. Brittany, I’m going to start with you, and Ted, I want you to chime in here as well. We talked about conventional treatments for vitiligo. They obviously can put a burden on patient’s lifestyle, time, and commitment; lots of office visits are needed. How do you think the new advent of the ruxolitinib cream and, potentially, these new other therapies will help impact the burden for patients?

 For sure, going to phototherapy or going for 

 2 or 3 days a week is not feasible for most patients and certainly not something that’s sustainable long-term. Again, the data we have is ruxolitinib monotherapy, so that’s something you can do without anybody else at your house. I think getting people to do it is the next step, to get adherence there. But again, as you mentioned, patients with vitiligo are very motivated, and I think we just need to make sure and tell them at the outset, this is something you need to do routinely, and you need to keep going because you’re not going to see anything for a while. Also, in the beginning or when you start to repigment, it’s also important for patients to know that they might not really love what they see because they get this “salt and pepper” look that is almost more obvious than complete depigmentation. This is something where you may not love the road, but we think that we’re going to be able to get there in the end. So, we have to commit to it. Do you think that you can do this twice daily most days out of the week? If you need to set an alarm for it, great. I always tell people, put it with your toothbrush. Don’t brush your teeth with it, but do it when you brush your teeth. They have data; it takes 28 days to make a habit. You do it for 28 days, it’s part of your life. Talking about home phototherapy, if we’re able to get that for patients, that can make things a lot easier. Then again, when we have the conversation with them, asking, what’s reasonable for you? And making it OK for them to say, “Wow, that’s a lot.” I’ll say to people, this is hard. I’m not sure I could do it; do you think you could? Are you that motivated?

 And then figuring out, kind of like you were saying, acknowledging the impact on quality of life. We have to give them permission to say, because they want to be the good patient, they want to say, “Yes, Doctor, I’ll do whatever you say.” But in the back of their mind, they’re like, “Oh my gosh.” When they get home and they realize what that actually means, and they’ve got kids, and they’ve got to run out the door, it’s a whole different scenario. So, I’ll say, “This is a lot of work. Do you think that you can do it and are you motivated enough?”, And I will say, “Or do you think we should just choose one area to start with? Or if after a while you fatigue, then OK, maybe then we focus on one.” But again, it’s really about being their cheerleader but also acknowledging that it’s not easy, even though it sounds easy. Just put a cream on twice a day. When you have a busy life, it’s one more thing.

It’s one more thing to do. Ted, anything to add?

 I think Brit had some really good points there. I think it’s important to understand that on the label, there’s no limitation of use in terms of time. We have 52-week data. As Nada Elbuluk said, we’re going to get more data in terms of safety and longer use. So, this can be used in all areas of the body, and I would encourage people to really ask patients about those special sites, the genital area in particular. It can be devastating for patients, much like other inflammatory diseases are devastating in that area. So don’t forget to ask, examine, and talk about how this one treatment is available to be used in all body areas for an unlimited amount of time. We do have a BSA [body surface area] limitation, but not a time limitation.

Expert dermatologists discuss the impact of vitiligo and vitiligo treatment on quality of life.

Nada Elbuluk, MD, MSc, FAAD

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