Journal of Dermatology for Physician Assistants

The official journal of the Society of Dermatology Physician Assistants

Patients Report the Hidden Costs of Living with Atopic Dermatitis

By Steve Nelson
This article is the second in a series provided by the National Eczema Association.

Steve Nelson is Senior Editor, National Eczema Association in Novato, California.

Disclosures: The author has disclosed no potential conflicts of interest, financial or otherwise, relating to the content of this article.

More than 31 million Americans live with eczema, but until recently we did not know how much money people were paying out of pocket (OOP) to manage their disease. The National Eczema Association (NEA) administered a research survey to its community of patients and caregivers to learn more about the financial burden of OOP expenses related to atopic dermatitis (AD). Prior to this study, there was no comprehensive analysis on the OOP financial burdens of AD in the United States, nor any research that investigated the impact of these OOP costs from the perspectives of patients and caregivers. Results from this effort demonstrated a significant correlation between OOP expenses and the severity of AD: patients with higher OOP costs reported more severe eczema symptoms, more days flaring per month, and more monthly visits to their healthcare provider. The study also revealed associations between higher OOP costs and the presence of comorbid conditions such as food allergies, asthma, rhinitis, anxiety, and depression. These data highlight the importance of working with patients in developing treatment plans that minimize financial burden while striving for desired care outcomes.

More than 31 million Americans live with eczema, but until recently there was little known about the nature and amount of out of pocket (OOP) expenses patients incur to manage their disease. New research conducted by the National Eczema Association (NEA) has established an association between increased severity of atopic dermatitis (AD) and a corresponding increase in OOP costs for care and treatment. Symptoms and triggers of AD vary greatly across the patient community, as can the breadth of management approaches. Given the heterogeneous nature of AD, healthcare providers can benefit from a deeper appreciation of the breadth and impact of OOP costs many patients experience while managing their disease; this knowledge can empower providers and patients to collaborate on treatment plans that are effective and financially sustainable. As the largest patient advocacy organization serving people with eczema and their caregivers, NEA conducts patient-centered real-world research and shares significant findings to increase knowledge and enable shared decision making between healthcare providers and patients. From November to December 2019, NEA researchers administered a 25-question survey to 113,502 individuals and family members living with AD. Of the 1,447 people who agreed to participate in the research survey, 1,118 individuals living with AD met the inclusion criteria for the study. Respondents provided data about the severity of their AD, frequency of flares, number of health care provider visits and out-of-pocket (OOP) costs related to the treatment of their condition; patients and caregivers also provided demographic information about themselves, including race/ethnicity, gender, household income, insurance coverage, and geographic setting.

To better understand the multifaceted costs of treating AD, NEA researchers organized 22 different OOP expenses into three main categories: healthcare provider visits and prescriptions (including co-pays); nonprescription health-related products like moisturizers, sleep aids, hygiene products and dietary supplements; and complementary care items like clothing, bedding, cleaning products, and supplemental therapies like acupuncture and traditional Chinese medicine.

Each category of OOP expense had some degree of reporting by respondents reflecting the variable management nature of the disease, though some data trends did emerge. For instance, 68.7 percent of survey respondents indicated that they had incurred OOP costs for co-pays and deductibles in the past 30 days; 64.3 percent of respondents also reported that they had OOP co-pays for prescriptions covered by their insurance; and nearly half (48.6%) of the respondents spent money OOP on prescription medications not covered by their insurance. Nearly all patients in the survey reported OOP expenses for nonprescription moisturizers (94.3%).1 Around half of the respondents had spent up to $50 in the past month on over-the-counter corticosteroids (53.5%), allergy medications (56%), and hygiene products like soap and bath water-additives (57.2%).1

Some forms of eczema management were less widely reported: approximately one in five respondents (19%) had OOP expenses related to alternative treatments (such as naturopathic or traditional Chinese medicine) and 150 people (15.9%) reported OOP expenses on adjunctive therapies such as yoga or acupuncture.2

The research responses also underscored the wide range of total OOP costs that people with AD experience. The median annual OOP expense related to AD was approximately $600, whereas 42 percent of patients reported spending more than $1000 per year, and 8.5 percent reported more than $5,000 annually in estimated OOP expenses.1

NEA researchers also established a significant correlation between increased severity of AD and increased OOP expenses: the worse the disease, according to patients, the more money people spent OOP trying to control it. People with higher OOP expenses were more likely to have increased AD severity, poorer control of their AD, more days actively flaring, and more monthly visits to their healthcare provider. People and caregivers with AD who spent more than $100 monthly OOP to treat their eczema were also more likely to report minimal disease control (41.1%), reliance on multiple prescription treatments (39.7%), and the use of stepup therapies such as injectable and oral medications or phototherapy.2 Nearly 40 percent of respondents also indicated that they had spent more than 11 days actively flaring in the preceding month, whereas the number of people flaring more than 11 days in the past month jumped to 51.1 percent of respondents who spent more than $1,000 OOP annually (Figure 1).2

Patient-reported data also indicated a significant association between increased OOP expenses and comorbid conditions such as asthma, allergic rhinitis, anxiety, and depression.2 Over one-third of patients (36.5%) reported additional diagnoses of anxiety and/or depression.1 However, less than 15 percent of respondents reported any expenses for mental health services, suggesting an unmet need in the AD community for increased mental health assessment and treatment in tandem with treatment for AD.1 In the 2019 More Than Skin Deep report, several people with eczema articulated the interconnectedness of anxiety and depression with AD. Greg Clark, who lives with moderate-to-severe eczema reported that “eczema was controlling [him.]” He went on to say, “I got depressed. I was suicidal. I couldn’t look at myself in the mirror because I didn’t know who I was.”3 And Akilah Evans-Pigford, in reference to her teenage son’s experience with eczema, explained that “After a while it got to the point where my son said things like, ‘I hate myself,’ and ‘I don’t want to be here anymore.’”3

A majority of respondents (57.5%) in the survey indicated that they are using at least three different prescription treatments to manage their condition, highlighting the challenge of managing a chronic disease with periodic flares, but also the potential for increased OOP depending on insurance coverage.

For Ashtan Raniga, who lives with moderate-tosevere AD, the most surprising OOP expense was the cost of the medicine itself. “My medications for eczema tend to be around $30 every month,” he said. “But without insurance that cost jumps to $300.” Raniga explained that the burden of cost is compounded for people with multiple medications. “If you’re someone like me,” he said, “who has different types of flaring and a variety of medications, the cost can truly damage your financial well-being.” Raniga added: “Some people have to decide between food on the table or taking care of their health. It’s a lose/lose situation.”

Patricia Cervini expressed a similar sentiment about the OOP costs of her treatment plan. “The first time I tried to get insurance approval for my medication,” she said, “I vividly recall telling the pharma sales rep that I was willing to pay out of pocket if my insurance didn’t approve the medication – I was that desperate. But when she quoted me the cost, I almost dropped the phone. Honestly, there was no way I could cover that cost every month.”

Most survey respondents (40.1%) reported a moderate impact of these OOP expenses on their finances. However, nearly one quarter (24.5%) indicated a significant or devastating effect. There was also a significant association with lower income and the use of Medicaid with increased negative impact of OOP costs for AD treatment (Figure 2).2

Analysis of survey responses revealed additional OOP costs independent of paying for prescriptions and copays, such as expenses for specialized clothing, bedding, and care-related transportation. Amberley Sanden provides care for her 18-month-old brother, who also lives with moderate-to-severe eczema. “My baby brother has to wear 100% organic cotton to avoid flaring. He flares when he touches car seats, stroller seats, really anything,” she said. “No matter the weather, he has to wear clothes that cover almost every inch of his body to avoid flaring, and since his clothing has to be right for him, that gets really expensive over time.”

Patricia Cervini articulated the challenge of transportation- related costs. “While dupilumab was a miracle drug for my body, I still had stubborn flares within my eyebrows and around my eyes, so I tried phototherapy” she said. “My insurance covers the treatment, but the drive was two hours roundtrip, three times a week – and that’s not sustainable.” Patricia said she tried multiple times without success to get her insurance company to approve reimbursement for a phototherapy machine to use at home. “I was denied every time,” she said. “In the end, I bought the smallest, most affordable phototherapy unit I could for my home, all out of my own pocket.”

Ashtan Raniga mentioned the time and cost of driving as well. “In Northern California, the Kaiser Permanente locations are pretty spread out,” he said. “With gas approaching $5 per gallon, the amount of money I spend traveling 35 miles each way to the doctor’s office is really frustrating.”

In summary, the data and details of NEA’s research have outlined key opportunities for current health care conversations as well as future investigation. In a condition with complex, heterogeneous symptoms, the OOP financial burden is significant in how it universally affects people with all severities of AD, but especially those with uncontrolled disease, or severe AD. While additional studies are needed to better understand the longitudinal associations of OOP costs and impacts, healthcare providers have an opportunity to use this information today to guide care decision making with their patients to minimize financial impacts of care while striving to achieve better disease control.

1. Smith Begolka W, Chovatiya R, Thibau IJ, Silverberg JI. Financial Burden of Atopic Dermatitis Out-of-Pocket Health Care Expenses in the United States. Dermatitis. 2021 Jan 14.
2. Chovatiya R, Smith Begolka W, Thibau IJ, Silverberg J. Impact and Associations of Atopic Dermatitis Out-Of-Pocket Healthcare Expenses in the United States. Dermatitis. 2021. Accepted for publication.
3. McClearly, K. The More Than Skin Deep “Voice of the Patient” Report. Published March 2020. Accessed May 19, 2021.

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