Korey Capozza, MPH; Elizabeth A. Swanson, MD; and Taylor Capps share pearls for patients and their families managing atopic dermatitis.
Raj J. Chovatiya, MD, PhD: 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?
Taylor Capps: 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.
Raj J. Chovatiya, MD, PhD: 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?
Tina Capps: 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.
Raj J. Chovatiya, MD, PhD: 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?
Korey Capozza, MPH: 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.
Raj J. Chovatiya, MD, PhD: 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?
Elizabeth A. Swanson, MD: 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.
Transcript Edited for Clarity