Why can’t you just tell yourself to stop scratching? Very simple: you never told yourself to start. Your conscious willpower self isn’t running the show.
Published On: Jan 29, 2021
Last Updated On: May 5, 2021
We know living with eczema comes with many costs. But, until now, we have not known the extent of financial costs that Americans bear out of pocket (OOP) to manage their atopic dermatitis (AD).
The NEA research team set out to fill this gap with a survey of its eczema patient and caregiver community. The findings, analyzed in collaboration with researchers Raj Chovatiya, MD, PhD (Northwestern University) and Jonathan Silverberg, MD, PhD, MPH (The George Washington University School of Medicine and Health Sciences), have been published (in part) in Dermatitis.
Details from the new study reveal that 42% of Americans living with AD spend $1,000 or more OOP every year to manage their eczema. While the median annual estimated OOP expense is $600 across all survey respondents, annual OOP costs equal to or exceeding $5,000 were reported by 8.5% of participants.
Prior to this research, there were no comprehensive studies on the OOP financial burden facing Americans living with AD, nor current research that investigated this important aspect of care from the patient and caregiver perspective. This is important news for people living with AD because the study highlights critical opportunities where healthcare providers can work together with their patients to minimize financial burden while developing and modifying treatment plans.
The 1,118 survey responses provided important new real-world information from a large cross-section of the AD community. Eligible respondents to the 25-question voluntary survey had to be U.S. residents aged 18 year or older, living with AD or providing primary care for someone with AD.
The study grouped 22 unique expenses into three main categories: prescriptions and healthcare provider office and hospital visits (including co-pays); non-prescription products like moisturizers, dietary supplements, hygiene products and sleep aids; and supportive care items such as clothing, bedding, cleaning products, as well as complementary therapies like traditional Chinese medicine.
The pervasiveness and the specifics of reported OOP costs provide a new, more detailed picture of this financial burden, including more and less common expenses. For example, 68.7% of responders reported OOP copays and/or deductibles for visits to their healthcare provider(s) over the past 30 days, 19% indicated OOP expenses for complementary/alternative medicines, yet nearly all responders, 94.3%, paid OOP for non-prescription over the counter moisturizer.1 Collectively, the study results highlight the wide array of and range of OOP for health-related expenses incurred by patients to manage their disease.
This study also found that nearly half (48.6%) of AD patient and caregiver respondents had OOP costs for prescriptions not covered by insurance. The resulting financial burden of this finding is especially troubling in light of how many responders additionally reported using multiple prescriptions for treatment; 89.6% of responders had at least one prescription to treat their AD, while 57.5% percent had three or more different prescriptions.1 This could provide an opportunity for changes in how treatment options are covered by insurance, and how healthcare providers consider different therapeutic approaches in designing more affordable treatment plans, with knowledge of their patients perspectives and financial implications. Some suggested treatment recommendations may be unaffordable for patients, either overall, or due to changes in their insurance or financial status over time.
The survey responses also provide a compelling portrait of how disruptive AD really is, in both frequency and severity, for Americans living with the condition: 74% percent of responders indicated their AD was either severe or moderate; 39.4% had more than 11 flare days in the past month; and 22.4% had seen their healthcare provider(s) at least 5 times in the past year for AD treatment.
The psychological and emotional impacts of AD combined with its prevalence in the American population also raises urgent questions about the availability and affordability of mental health services, as 36.5% of respondents reported additional diagnoses of anxiety and/or depression. However, the article suggests that the “OOP costs for mental health services were quite low among respondents, which was surprising given the strong association between AD and mental health disorders, including depression, anxiety, and psychological distress.”1 With less than 15% of responders reporting expenses for mental health services, there is need for the healthcare community to increase screening for mental health symptoms, as well as OOP cost-sensitive coverage considerations to facilitate use of these support services by the AD patient community.
The study acknowledged the limitations of assessing long-term “changes in costs, treatments and healthcare utilization,” due to the cross-sectional nature of the research design.1 It’s worth noting that the self-reporting of AD severity has been previously validated in other studies. Many Americans living with AD have a strong, clear understanding of their own symptoms and severity, thereby validating the accuracy of their responses in the survey. 
Additional findings and insights from this study are expected to be published soon.
For more information about this study and other research conducted by NEA, visit: NationalEczema.org/surveys.
 Smith Begolka W, Chovatiya Raj, Thibau I, Silverberg J. Financial Burden of Atopic Dermatitis Out-of-Pocket Health Care Expenses in the United States. Dermatitis: 2020; 10.1097
 Flohr C, Weinmayr G, Weiland SK, et al. How well do questionnaires perform compared with physical examination in detecting flexural eczema? Findings from the International Study of Asthma and Allergies in Childhood (ISAAC) Phase Two. Br J Dermatol 2009;161(4):846–853.
 Vissing NH, Jensen SM, Bisgaard H. Validity of information on atopic disease and other illness in young children reported by parents in a prospective birth cohort study. BMC Med Res Methodol 2012;12:160.