The NEA research team has published its latest paper on the out-of-pocket (OOP) costs of atopic dermatitis (AD) in the U.S. — this time examining OOP costs among caregivers of children with AD compared to adults.
Published On: May 21, 2020
Last Updated On: Mar 22, 2021
Many people refuse to shake hands with Ankush Budhiraja due to the appearance of his skin, which often looks dry, red and inflamed with eczema.
“Even if they do shake my hand, they feel the need to ask if my problem is contagious,” said Budhiraja, a 25-year-old who lives in Chandigarh, India.
Budhiraja has been bullied by classmates, who teased that he poured flour on his face because of his dry skin.
“Even teachers are not as accommodating as they should be,” he said. “I have received weird and demeaning remarks from them.”
He said his own sister has made fun of his eczema, straining family relationships as he tries to manage his skin condition.
“I feel like an outcast because of this disease,” he said. “I feel handicapped.”
Although it’s common for individuals with eczema to feel isolated or alone, this chronic inflammatory skin disease affects millions of people worldwide.
According to research presented at the 2018 European Academy of Dermatology and Venereology Congress by Dr. Jonathan Silverberg, a dermatologist at Northwestern University in Chicago, eczema affects 10% of adults and 4 to 8% of children globally.
In addition, Silverberg reported higher prevalence in China and South Korea (respectively, 15% of adults and 14 to 16% of children and teens), and lower occurrence (2 to 4% of all ages) in Israel and Switzerland.
To better understand how eczema affects people around the world, we spoke with patients from several different countries about their social interactions, treatment regimens and access to care. Here’s what we learned about the global eczema experience.
A complex disease with a spectrum of symptoms and comorbidities, eczema impacts every aspect of a person’s daily life. According to those who have it, discrimination can sting far beyond the constant itch and pain, making stigmas seem as burdensome as the condition itself.
As a high school teacher in Australia, Lisa Mitchell* worried how students would react to her inflamed skin. But it was her colleagues who made her feel ostracized. When she asked her boss if she could attend the staff pool outing to avoid the hot afternoon temperatures that trigger her eczema, she was shocked by the response to “not bother coming at all.” Other coworkers made rude remarks about the amount of sick leave Mitchell takes because of her condition.
“People tend to think it’s just [my] skin that hurts, but they don’t understand how it affects my whole system and the impact it has on my daily life,” Mitchell said. “I often exclude myself because of how people react and the level of social anxiety I have. I withdraw from activities because I can’t participate and don’t want to ruin everyone else’s fun.”
More than half of adults with moderate to severe eczema report that the disease significantly limits their lifestyle. Even with mild eczema, more than one-third of adults experience some limitations according to a population-based cross-sectional study published in Annals of Allergy, Asthma & Immunology in September 2018. Like Mitchell, 40% avoid social interaction and activities.
In Slovenia, 20-year-old Nastja Troha said she faces similar ostracism because of her eczema.
“My ex-friends excluded me quite a bit,” she said. “They didn’t invite me to go to the pool with them because of how I look. They didn’t invite me for a night out because I don’t drink. They didn’t invite me to go out to eat because I have too many allergies.”
At home, eczema strains Troha’s relationship with her mother because pain prevents her from doing simple household chores. “Some days, I just lay in bed and cry,” Troha said. “I can’t go out or help around the house because everything hurts when I move.”
Never-ending itch distracts her from schoolwork too. “I could be a straight-A student, but most of the time I can’t even force myself to study for five minutes. Eczema disrupts my sleep, and that makes me unfocused and irritable. Because of that, I often miss classes,” said Troha, who is studying social work.
Nearly one-third of adults with eczema have experienced challenges at work or school, with of patients reporting the disease has hindered their academic or career progress, according to a study published in the Journal of Allergy and Clinical Immunology in May 2006.
And according to a study published in the Journal of the European Academy of Dermatology and Venereology in March 2006, almost 40% of patients have turned down a job or educational opportunity because of their condition — suggesting that eczema is not just an individual burden, but a societal issue.
*Name has been changed to respect the patient’s desire for anonymity.
Between battling constant itch and dealing with rude reactions, coping with the effects of eczema can add mental stress to the physical discomfort of the disease, said Bethany March, who lives in Toronto.
“Eczema is emotionally draining, but the mental effects are the least talked about,” said March. “I don’t think you can grasp how devastating an impact it has on a person’s self-esteem and mental health unless you live with it. It’s not just the damaged skin barrier that hurts, it’s the constant looks from strangers on the street, the interrogating questions from ignorant people.”
Even doctors and well-meaning friends and family overlook the mental impact of the disease by focusing on physical symptoms, she added.
“They ask how your skin is doing, but they rarely ask how you are,” said March, who turns 20 this year. “Because it’s a visible disorder, there tends to be such a clinical and physical approach to its treatment. I’ve been given a plethora of prescriptions, but never once have I been offered any mental health help.”
Several studies have explored the link between skin disease and mental health, suggesting that eczema patients may be at increased risk for depression and anxiety.
“My self-esteem suffers a major blow. I have felt suicidal because of this disease,” Budhiraja said. “It might seem insensitive, but I have wished I had some other disease — maybe lacked a limb or two; at least people would be sympathetic to my situation then.”
Since stress can trigger flares, finding ways to cope is critical. Budhiraja began practicing meditation about four years ago. Troha tried meditation as well but couldn’t focus because of the constant itch. Instead, she started seeing a therapist to address her mental health.
“Stress management is a really important part of managing eczema because stress can have a negative impact on your skin,” said Troha, who was also diagnosed with depression. “After a few visits with my therapist, I can see myself getting a bit better mentally, and the effects are showing on my skin too.”
Although there is no cure for eczema at this time, a comprehensive treatment plan can help minimize flares. With fairly similar guidelines around the globe, treatment typically begins with moisturizers and topical corticosteroids as first-line therapies for many patients.
“In the first years after my diagnosis, the only available treatment options were steroid creams, so I did that for 30 years,” said Natasha Sousa, a 48-year-old in Portugal who was diagnosed with atopic dermatitis (AD) as an infant. “Now, there are more options regarding topical and oral medicines, along with new biological treatments that are being developed.”
When Sousa’s eczema worsened in her 30s, her dermatologist prescribed an immunosuppressant (cyclosporine), but after a year, her skin wasn’t showing any improvement. She experimented with immunoallergology — including immuno-therapies like gamma globulin and allergy medications like omalizumab.
Troha’s treatment journey in Slovenia was similar, starting with ointments and topical steroids. When her flares worsened in high school, her dermatologist “tried everything: more topical steroids, UV therapy, immunosuppressants and antifungal medications, but nothing worked,” she said.
Sousa and Troha eventually found relief with a biologic treatment when the European Union approved Dupixent (dupilumab) for treating moderate-to-severe AD. Other countries like the United States, Canada and Japan have also approved dupilumab, but it’s still not available everywhere, including India where Budhiraja lives. Instead, he explored other alternative therapies, searching for a solution without the undesirable side effects he experienced with steroids.
“I used topical corticosteroid creams for 15 years to manage my eczema, but it was just a temporary fix with several side effects of its own,” said Budhiraja, who suffered topical steroid withdrawal and developed allergic rhinitis (hay fever) when he stopped using the creams. Now, he avoids triggers by sticking to a limited diet.
“I try to avoid caffeine, alcohol and sugar,” said Budhiraja, who drinks and applies both apple cider vinegar and coconut oil as needed. “If I cheat [on my diet], I can clearly see the results [on my skin].”
Alternative therapies are more common in certain parts of the world, where some eczema patients swear by them. In Singapore, Shu Hui Lee grew up with access to both western medicine and Traditional Chinese Medicine (TCM), which incorporates ancient healing modalities like acupuncture and herbal treatments.
Lee tried to manage her eczema with TCM, but it didn’t stand up to her serious flares, so she returned to steroid creams and moisturizers while avoiding certain foods and triggers like dust, paint and heat. Since no single treatment works for every eczema patient, the solution is often a combination of therapies and behaviors to keep the disease under control.
Although treatment plans are similar across the globe, access to dermatologists and other specialists varies widely. Depending where you live, the time and cost involved in seeking care can delay patients from getting necessary treatments.
“Living in New Castle, the sixth largest city in Australia, I’ve had reasonably good access to care,” Mitchell said. “However, if I lived outside of the major city centers in a rural area, I would have to travel for hours or even days to see a specialist.”
Mitchell has been on a waiting list for a new dermatologist through Australia’s public health care system for six months. She used to see a private specialist, but it became too costly — “around 250 Australian dollars (US $161) for an initial consultation and $150 (US $96) for follow-up appointments,” she said — in addition to the private insurance plan, which cost around $8,000 (US $5,211) a year.
When flares are severe enough to require hospitalization, Australia’s universal health care insurance (called Medicare) covers the cost entirely. But buying prescriptions is another story. “While the creams have a certain percentage of the cost covered under Medicare, they can still cost upward of $80 a fortnight (more than US $50 every two weeks),” Mitchell said.
In India, costs are so low that Budhiraja pays cash rather than bothering with insurance at all.
“Access to dermatologists is not an issue,” he said. “They are available in both government-funded hospitals with negligible fees and private clinics where fees usually range from 250 to 500 Indian Rupees (US $2-4), which is also within reach of middle-class households.”
In other countries, patients face a difficult choice between timely but pricey private care or cheaper public care with long wait times. These issues can be exacerbated for milder eczema that doesn’t warrant emergency care. “If your skin isn’t in bad condition, you can wait up to a year for your first dermatology visit,” said Troha.
“In Slovenia, you pay something like 30 euros (US $34) per month, and you use everything you need for free,” Troha said, referring to the mandatory health care system managed by the Health Insurance Institute of Slovenia, which covers hospitalization, treatments and prescription drugs. “The only thing is, it’s not easily accessible because the waiting time for some things is more than four years.”
Regardless of culture or location, eczema patients around the world share the common experience of navigating a complex disease with all its comorbidities, stigmas and potentially expensive treatments.
Although these challenges can make patients feel isolated at times, it helps to remember there are millions of fellow eczema warriors around the world fighting the same battle. Finding ways to connect, share and advocate together can help lighten the burden of the disease.
“My advice to anyone with eczema would be to find other people who are dealing with it,” March said. “I find comfort in other people’s eczema stories. When my skin is not doing well, it helps to realize that I am not alone and that there are others who are struggling too.”
Budhiraja met fellow eczema warriors in India through the International Topical Steroid Addiction Network’s Facebook group. “They really help me unwind,” he said. “I can let loose and talk about my emotions.”
Connecting with other eczema warriors around the world can bring the shared eczema experience to light and bust common misconceptions about this disease.
“So often I find people with eczema glossing over it so that others don’t get uncomfortable. In the last couple of years, I’ve started talking more openly about my reality in the hopes that people might understand better. I think it’s time we started addressing this collectively as the chronic illness it is,” Mitchell said.