Atopic Dermatitis: The Patient Journey - Episode 13

Patient Advocacy for Atopic Dermatitis

June 28, 2022
Raj Chovatiya, MD, PhD

,
Elizabeth Swanson, MD

,
Korey Capozza, MPH

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

Raj J. Chovatiya, MD, PhD: 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.

Korey Capozza, MPH: 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.

Raj J. Chovatiya, MD, PhD: 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.

Transcript Edited for Clarity

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