Atopic Dermatitis: The Patient Journey - Episode 12

Barriers to Access for Atopic Dermatitis Therapies

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

Raj J. Chovatiya, MD, PhD: 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?

Elizabeth A. Swanson, MD: 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.”

Raj J. Chovatiya, MD, PhD: 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?

Tina Capps: 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.

Raj J. Chovatiya, MD, PhD: 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?

Taylor Capps: 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.

Transcript edited for Clarity