Korey Capozza, MPH

 I know it’s a loaded question, but what are the biggest challenges you face when it comes to managing patients with atopic dermatitis?

 One is access and insurance frustrations, which can wear on you as a physician. All you’re trying to do is do the best for the patient, and you feel as if there are roadblocks in your way. Sometimes going through the prior off struggle, it’s like jumping over hurdles. But every time you jump over a hurdle, somebody says, “Wait, did you fail pimecrolimus [Elidel] first”? Can I jump this hurdle, please? Every hurdle is more than the hurdle. It’s questions and paperwork and all that stuff. Access is a big deal. The other thing is there’s a lot of misinformation out there. Programs like this with participants like this are excellent resources for patients with atopic dermatitis who are struggling. But there’s a lot of stuff out there on the internet that isn’t exactly the information I want my patients perusing and following. Sometimes I’m combating that during my clinic visits as well.

 You highlighted a couple of big challenges. I’ll take a forward-facing view. In my estimation, 1 of the big challenges when it comes to medications—let’s say in new treatments—is that atopic dermatitis sometimes feels like it’s a bunch of different conditions under this umbrella. Patients present so differently and have different constellations of signs and symptoms. Their comorbidities are totally different. It’s 1 reasons why having 1 or 2 treatments isn’t enough. We’re not at a point where we can say this is going to work for everybody without any exceptions. We’ll probably never get to that point because of the way that atopic dermatitis works. We definitely need to continue looking into new mechanisms of actions for new therapies.

As far as unmet needs go, evolution in the topical space has largely been limited until recently. We’ve had topical corticosteroids and topical calcineurin inhibitors, but at a certain point, everyone said, “That’s enough. We’re done. We don’t need any more.” Until essentially the approval of crisaborole a few years ago on topical ruxolitinib, there wasn’t much happening, but now there is a lot of stuff that’s far in the pipeline. A new topical PDE4 inhibitor roflumilast looks to be more potent than the previous predecessor crisaborole that also has good application site. Not much reactivity for patients. Topical tapinarof is another 1, a new class of medications with a new mechanism based on returning the skin to homeostasis. That’s just to highlight a couple.

Even on the systemic side, we have new oral therapies. We talked about the JAK inhibitor class. There are new targets being looked at for biologic therapy, and there’s more specific targeting of interleukin 13, another pathway called OX40 ligand, and a variety of others that are probably going to be coming to a toolbox near us. The more choices we have, we can hopefully get to that point of saying, “This is what somebody’s signs, symptoms, comorbidities look like at baseline. This is the best treatment I’m going to match up with.” That’s the Holy Grail for what we want in the dermatology community. Hopefully we’re going to get to that point. We’re a lot closer than we were before, so the treatment landscape is going to continue evolving. As I mentioned before, it’s not an exaggeration to say that we’re beyond 100 in terms of everything across various phases of trials. If anyone ever to the registered database for clinical trials, you’ll see there’s a ton going on for atopic dermatitis.

One big area that I’ll leave on, where I want to see more work done, is that when there are differences in racial and ethnic background, geography, patients with skin of color vs not, how does all this figure into No. 1, appropriate diagnosis and estimation severity, and No. 2, the best and most effective and safe treatment. Even with certain conventional treatments, there’s an undue burden placed on patients with skin of color. I’ll highlight topical corticosteroids as 1 of those. Chronic use of topical corticosteroids is associated with dyspigmentation. It’s a problem that I’ve had with my patients with skin of color. I’m sure Lisa has seen it in hers as well. We need other options from that simplistic standpoint, but even when you break it down in terms of differences in biology and presentation, there probably are different aspects of the disease that are going to need to be researched.

That’s how I see a few of those challenges from a treatment and patient-identification perspective. This awesome panel highlighted issues when it comes to actual access of medication, advocacy, building that community, what it like to go on that journey: from the patient and caregiver side and from the medical side. From that point, I’m going to close. A big thank-you for everyone for watching this 

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Elizabeth A. Swanson, MD, and Raj. J. Chovatiya, MD, PhD, examine challenges in managing atopic dermatitis and explore the evolving treatment landscape.

Unmet Needs in Managing Atopic Dermatitis

Let’s transition and talk a bit about Taylor and Tina. I’ll start with you, Taylor. Do you have any pearls, tidbits of advice, that you would pass on to somebody if they were watching this or you were talking to another family member or friend if they were diagnosed with atopic dermatitis and had similar symptoms? What would you want them to know in terms of high-level points?

 One thing that Korey said that resonated with me is that you have to self-advocate but also find the partnership and the doctor and not settle for anything less than that. That was 1 of the biggest struggles. Granted there weren’t as many therapies on the market as there are today. It wasn’t until I found the right doctor. I always joke with my parents. I moved 12 hours away from them to Chicago to pursue a job, but I always joke that I was destined to be here to No. 1, find my dermatologist, and then No. 2, find a fiancé. I joke with them all the time about that because it’s such a game changer, finding a medical professional who’s willing to advocate and spend the hours and the time it takes to make sure you’re getting the treatment.

I remember going through health care approvals. To your point, it was like you need to use this cream and to have taken this step. I did all that, but they still wanted me to document it and try it again before they would get me to dupilumab. My advice is No. 1, definitely educate yourself on what your options are. But No. 2 is key: don’t settle for a doctor who’s not willing to fight for what’s best for you. Go up against the insurance company. There are so many programs out there that will give you access to the medication if it’s something you don’t qualify for or if it’s too expensive. There are many programs out there that will help supplement the costs.

 You highlighted 1 powerful element. Oftentimes, if you’ve lived in 1 place or another and you’ve seen multiple providers, your health care provider isn’t going to know your history and treatment journey as well as you are. Something I recommend to all my patients is keep track of what you tried because you may have tried many things. If you got a good list of it, that’s exactly what’s going in my documentation. If anybody on the other end tries to tell me you have a jump through these hoops, that’s nonsense because we’ve done this and we’re not doing it again. We’re not settling for that. That’s a powerful piece and something to hang on to from the patient aspect.

I’ll flip it to Tina. What would you have done differently if you were to go back in time with Taylor to when she was younger?

I would have been more persistent and pushed the envelope a bit and tried to get the doctors to not just treat the topical but to look at the root cause of what was going on internally that was causing the atopic dermatitis and the symptoms she was experiencing. That would be my thing. It’s more or less the root cause.

That’s powerful in the sense that we understand much more about the condition and have many more resources. It’s a reasonable ask for people to feel like they understand what’s going on with their body when it comes to atopic dermatitis in 2022. I’ll flip it to Korey. Is there any particular advice, any pearls that you have, for patients and their families when it comes to advocating for themselves, forming a community in terms of trying to get at support for atopic dermatitis?

Yes. Thanks for asking that question. This condition can be so lonely. The impacts are hidden from view, and even your closest friends and family struggle to understand it. We talked about the mental health impacts, the isolation. It’s important to connect with the community. Thankfully, there are a lot of ways to do that. Our organization [Global Parents for Eczema Research] has a support for eczema caregivers program that’s free. We have small groups going on almost every week where you can connect with other parents, so you don’t feel that sense of isolation, as though no one understands what’s going on. If you can connect with other families and other patients who understand that it’s such a relief, then it really is. It makes you feel as though you’re not crazy. You’re not the only 1 experiencing this. Sometimes it’s almost as if the people around you, when you’re dealing with moderate to severe eczema, think you’re exaggerating or being a drama queen. Something about it they can’t understand: all those impacts that are hidden. When you can connect with a community that understands, it’s incredibly liberating. It’s wonderful for patients and parents. Look for those. There are several organizations. You mentioned the National Eczema Association. Our organization can also offer that and encourage parents and patients to connect on social media and other ways to find community.

 That’s very helpful. If we flip the community aspect around to the medical community—Lisa, I’ll direct this to you. A variety of practitioners out there are going to be helpful when it comes to treating and managing atopic dermatitis. You have MDs [medical doctors] and DOs [doctors of osteopathic medicine]. There’s an important role that physician assistants [PAs] play. There’s a big important role that nurse practitioners [NPs] play. How does this medical team or health care team work together to try to get control of atopic dermatitis?

 That can certainly be a challenge. Some communities do it well. In other communities, it’s hard to have a synchronized force of people who are motivated and enthusiastic about treating atopic things. As a dermatologist in Colorado and in Idaho, I made sure that I found allergists in my community who were similar-minded. I felt that a patient wouldn’t get 2 completely different polarizing views of atopic dermatitis during each visit. I found a couple of pediatric gastroenterologists, because eosinophilic esophagitis is a huge issue for a lot of very atopic kids. If my allergists weren’t comfortable handling asthma, teaming up with a pulmonologist that could help me with that, so I knew whom to send my patients to. Maybe I was the ringleader, but I had this team of people that I created for myself, that I felt comfortable having my patients see and that I felt comfortable would communicate with me to make sure we were all on the same page. In the end, it boils down to the individual physician or NP or PA to form their circles to give the patient the best all-around care.

Korey Capozza, MPH; Elizabeth A. Swanson, MD; and Taylor Capps share pearls for patients and their families managing atopic dermatitis.

Key Takeaways for Atopic Dermatitis Management

: That allows us to segue beautifully into picking Korey’s brain a bit. Can you talk about your role as a patient advocate and consultant? Talk about some of the stuff you do to help patients and caregivers on this journey.

: Thank you. I love to hear everyone talking about the exciting time that we’re in with these new treatments because I feel the same way as you, Lisa Elizabeth. I see these children who have been on this journey with our organization for 5, 6, 7 years, and suddenly their whole life is transformed. Someone said you’re held captive by this condition, and that resonated with me because it’s like these patients are prisoner to their eczema. When it’s gone, the person they were meant to be comes out, and it’s amazing. It moves me to see these children who were hidden for so long suddenly become star soccer players, or into theater, or whatever it is. It’s like the life they were meant to have suddenly unfolds for them. It’s amazing to see, so we’re so lucky to have these new treatments. I also wanted to say it does pain me a bit to still see requirements that we put children with more severe eczema on these old school systemics before they can get dupilumab. Back in the day, maybe we didn’t know what was better, but we know now. Those are not safe treatments compared to dupilumab. That shouldn’t be a requirement anymore. I hope that changes, and certainly, groups like ours are working on that.

In terms of what patients can do to advocate, and what groups like ours do, there’s a lot. I’ll say to patients out there, find yourself a Dr Raj, find yourself a Dr Lisa, someone who’s going to fight for you, who’s going to get you the treatment you need, who’s your partner out there, and don’t settle for anything less. You need that if you have this condition. It’s hard to figure out on your own for the best of us. I often say, my degree is in public health, I have a background in research, my husband is a PhD researcher, and we couldn’t find something that worked for our son. We were looking at all the research and trying to find the triggers and associate those with our son’s symptoms. It’s hard, and you need a champion, so look for that and continue to fight for it. Don’t settle for less. Then I think you do feel burnout. The patients feel the burnout, the caregivers feel the burnout, especially among the adults, they’re burned out, but don’t give up. It’s a different era, and there are better options. So get back out there, and demand something better for yourself because you can have a different life than the one you’re having if your eczema is poorly controlled.

Those are just some immediate thoughts. Be an advocate for yourself, but find a partner who can do it with you. I think that’s the way to have the most success. Then you do have to be a detective with this condition, but you don’t have to be the detective by yourself. I think there are ways that health care professionals can help find those triggers, find those underlying things that might be causing the eczema.

: All of those are incredible points. In many ways, we’re lucky to be in a time where there’s so much information, and educational opportunity is accessible for our patients. But in many ways, it’s almost confusing because there’s so much out there. “What am I supposed to follow? What don’t I follow? The health care provider told me this, but he or she didn’t talk about that,” and whatnot. I agree that this whole concept of having someone who can quarterback that team and partner with you is vital because it’s hard to do it alone. One of the biggest challenges of atopic dermatitis is the disease is so heterogeneous that person to person, the entire case can be different, everything from the physical findings, to the burden, to the symptoms, to the treatment. We really don’t have that information. Maybe we will, where if I see you one time, you check these boxes, this is exactly how your atopic dermatitis is going to go over the next 10 to 20 years. Maybe we’ll get there, but until that point, this is the discussion that needs to happen.

Korey Capozza, MPH, highlights the importance of patient advocacy in the atopic dermatitis journey.

Patient Advocacy for Atopic Dermatitis

: We highlighted some of these barriers, but to review, and Lisa Elizabeth, you can jump in on ones I don’t mention. We talked about insurance reimbursement from the physician side, there’s a big problem. The overall amount of time and effort, it requires office staff, you, and everyone working with you to try to get things approved. From the patient side, it seems like a big black box, I have no idea what’s going on, what’s going to happen. But there are other barriers that maybe we don’t think about as much and that are less studied. I’ll highlight one that we’ve done some research on with the National Eczema Association, out of pocket costs are a huge one that we don’t tend to classically think about. When you look at the amount of things that our patients and caregivers are trying over the counter related to prescriptions, parking, child care, laboratory work, you name it, this adds up. This is another one of those ideas that we don’t tend to think about as much when we’re making a plan. It’s something I’ve started to be cognizant of how can I simplify what I’m doing, but also consider, OK, is this going to be a huge financial burden for our patients? From the medical side, Lisa, what are some of those other barriers that I may not have mentioned that you tend to think about?

: That out of pocket cost is a big one because so many people have high deductible insurance plans, where even when a particular drug or whatever is “covered,” that only means once you’ve paid your $5000 or $10,000, or whatever it is. And programs like for dupilumab [Dupixent], Dupixent MyWay, is very helpful for those situations. Most of our drug companies for these newer medicines do offer something like that. Those are vital to us being able to prescribe and get these therapies for our patients and their families. I am also always surprised at the cost of all the over-the-counter things that people have tried. I, too, will try to simplify things, you don’t need to be using all of these various different things, emu oil or whatever people find online. I try to say, “Hey, let’s focus our time, our energy, and your dollars on things that I think are going to be helpful for you and your child, or your teenager, or whatever it might be.”

: Yes, Tina, do you recall from your perspective, particularly when Taylor was young, some of the stuff that you ended up spending money on, or barriers you faced in getting therapies that worked? Can you take us through a bit of that time?

: Back in the day, we didn’t have access to as many of the dye-free products, a lot of those places. We’d have to seek things in specialty pharmacy stores. I had to have some of her creams compounded. From that standpoint, that would be a barrier, finding the products that were being recommended over the counter. Of course, we did have out of pocket costs associated with the prescription drugs and things like that. That would be the main thing, the barrier I faced was finding the products, a lot of the things recommended to me over the counter. It was then, going, searching, finding; we didn’t have access to Amazon, and all that stuff. It was a trial to seek out places, try to find it.

: Yes. Taylor, have you found any particular resources, support groups, education to be helpful on this journey, even before you knew what was going on, or after you figured out you had atopic dermatitis? What’s been helpful or useful for you?

: Going back to what my mom was saying, it’s the access you have today. It’s important for folks to educate themselves. Videos like this today are helpful things that we didn’t have access to. We call my mom WebMD, she’s always searching and Googling things. But if we would have had access to tools and the knowledge base available online today, I think I could have been able to find a solution faster. But the access wasn’t there. Today, it’s vital for you to be an advocate for yourself. That’s been one of the biggest things for me. When going to the doctor, I assume they’re going to tell me what’s wrong, and they’re going to be able to look at it, diagnose me, and we move on. But one of the biggest things is having to research it and go to your medical professionals with what you think could be the problem, or say, “Here’s what I found,” and have them try to validate those things.

What I’ve found is if you’re not advocating for yourself, oftentimes you’re left behind. It’s an unfortunate place the medical field is in, but they’re treating so many patients and have such limited time, that if you’re not doing that, it definitely is going to hinder where you go in the future. It’s been very frustrating to me. Something I’ve had to learn over time is that, the more education you have going into an appointment, the better off you are.

Raj J. Chovatiya, MD, PhD; Elizabeth A. Swanson, MD; Tina Capps; and Taylor Capps assess barriers in finding and obtaining atopic dermatitis treatments.

Korey Capozza, MPH

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