People With Eczema Are Itching For Better Health Care

By Poncie Rutsch

Published March 4, 2015 at 1:01 PM EST

The itchy rash of eczema, also sometimes called atopic dermatitis, can be painful and unsightly.

It might seem silly to miss work for a rash. But people who have eczema often have to put a lot of time and money into managing the itchy, inflamed rashes they get over and over. Lindsay Jones, who lives in Chicago, was diagnosed with eczema when she was 2 weeks old.

"I try to take proactive measures to keep my skin calm, but the flare-ups are inevitable," Jones, age 34, tells Shots. Last year, her eczema got so bad that she missed work to go to the doctor and took a sick day just to treat her skin. Other days she would sneak in and out of her office so that only her immediate team would see her. "Because my flare-ups were so bad and they were on my face, it's not like I could put makeup over it," she explains. "I looked a little scary."

Jones isn't alone in her struggle to manage eczema; almost 10 percent of people in the United States have this skin disorder, which causes red, swollen, itchy skin, and is often related to allergies.

But most studies don't look at how eczema affects the lives of people who have it. Dr. Jonathan Silverberg, a dermatologist at the Northwestern University Feinberg School of Medicine, noticed that many of his patients were frustrated with their options, and wanted to figure out why. He used data from the National Center for Health Statistics for a study published Wednesday in JAMA Dermatology.

"Part of my job is trying to understand why eczema isn't just skin deep," Silverberg tells Shots. He found that in 2010, people with eczema spent an average of $371 on out-of-pocket health care. "That's above and beyond what the average person pays," says Silverberg. In 2012, that number had jumped to $489.

That increase worries Silverberg. "When you look at the brand-new Affordable Care Act there's a lot more patient burden of cost," he says. "So this problem will only get worse."

People with eczema missed 68 million work days in 2012, Silverberg found. Almost one-tenth of those were due to doctor appointments and other management of the disorder. Most of the days were lost to health problems commonly associated with eczema, including allergies, asthma, heart disease or osteoporosis. Having eczema, explains Silverberg, means that you're about 60 percent more likely to miss six or more days of work each year.

Part of the problem is that eczema is a chronic disorder, and one that's notoriously hard to treat. People with eczema often take preventive measures such as choosing soft clothing or using gentle moisturizers. Treatments include steroid, antihistamines, bleach baths and wet wrap therapy. Sometimes it takes dozens of doctors before a patient sees any progress. "There's not a one- size-fits-all answer," says Silverberg. "Patients are suffering for maybe weeks or months before they get in to receive appropriate care."

Jones estimates that she spent between $1,200 and $1,300 treating her eczema last year and visited several doctors before finding one she truly liked. "I'm lucky enough that my employer will let me make up the time that I miss for doctor's appointments," she says. She even took a day off to attend the conference in Boston, where she says she made friends and found support.

This year she plans to do the Itching for a Cure Walk in Chicago. She's hoping that the walk will draw attention to eczema and put pressure on the medical and pharmaceutical industry to find better products for people like her.

"You have to do what you have to do to live your life, so we're pretty tough," says Jones. "We are very mentally strong."