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Published On: Mar 12, 2024
Last Updated On: Aug 22, 2024
Edward Taguba, 46, has finally found relief from his severe atopic dermatitis. “I don’t feel shame anymore, and I feel at peace because I don’t itch as much as before,” he said.
It’s been a lifelong struggle to get here. Taguba, who lives in Oahu, Hawaii, cycled through countless medications over the years because of step therapy. Under the protocol, insurers may deny coverage for doctor-prescribed medications until the patient tries and fails one or more lower-cost alternatives first.
Despite all he’s been through, Taguba’s battle isn’t over yet. The solution that has, at long last, calmed Taguba’s eczema may be only temporary because of an insurance denial.
When Taguba was 8, he developed what he thought was an itchy rash on his arms and neck. As he got older, it spread to his face and scalp.
Taguba recalls regularly scratching to the point of bleeding. “I wore long sleeves to cover it up but then I’d have red spots on my clothes from the blood,” he said. “It was embarrassing.”
It was a mystery for most of his childhood. He grew up on the small Hawaiian island of Lana’i, which he said had only one general doctor. Taguba’s parents flew him to visit specialists in Honolulu, but no one could identify his symptoms.
After graduating from high school, Taguba finally received an answer from a dermatologist in Oahu who diagnosed him with severe atopic dermatitis. She told him there was no cure, but medications could help control it.
The diagnosis kickstarted a decades-long search for the best treatment. Taguba said he tried every ointment, cream, pill or injection his dermatologist could prescribe.
“Going through step therapy is like trial and error,” he explained. “We’d get my eczema under control for a while, but after a few months it would flare up again and we’d have to try something else.”
Taguba said steroid shots offered some relief, but only briefly because they can be administered only every few months. In between injections, his symptoms would worsen to the point where he couldn’t help but scratch. “My face would be raw and my eyelids were swollen from rubbing my face.”
Taguba’s eczema also often left him with open cuts when it spread across his body. His breaking point came in 2017 when an open wound on his foot became infected from a visit to the beach. “The infection spread and I was in the hospital for nearly two months.”
Taguba said the life-threatening experience prompted him to “wake up” in a sense. After nearly 20 years of taking steroids, which had failed to prevent his infection — he was adamant about trying something new.
“I told my doctor I didn’t want steroids anymore,” explained Taguba.
The timing was in his favor. The FDA had recently approved Dupixent, a new biologic treatment for eczema that requires patients to self-administer an injection every 14 days. Taguba said his eczema calmed significantly after using Dupixent for a few months.
Although Taguba responded well to the biologic, his severe atopic dermatitis was still prone to outbreaks between injections.
In 2022, his dermatologist prescribed a nonsteroid cream in addition to the Dupixent. When Taguba begins to feel itchy, he applies the cream and it prevents a flare.
He said the combination of the two medications has granted him a freedom he’d never felt before. “There’s normalcy in my life now.”
Unfortunately, Taguba’s hard-earned relief could be short-lived. His medical insurance has denied authorization for the cream.
Taguba said his medical insurance denied the cream because he is on Dupixent. They told him “because you’re already on another drug, Dupixent, we cannot approve the cream too,” he said.
He is currently appealing this medication denial with his insurance company. In the interim, his dermatologist is supplying samples of the cream to help him as best as they can. But this is not a long-term plan.
After struggling his entire life to find a remedy for his eczema, Taguba is bewildered that the insurance company would refuse to pay for a solution that finally worked.
“It’s important to let doctors prescribe what will actually help their patients,” Taguba said.
“It’s just like how diabetes patients depend on insulin. It’s the same thing with eczema,” Taguba said. “We depend on these drugs to help us live our lives.”
Step therapy, or fail first, is a health insurance protocol that requires patients try and fail on one or more medications before approving coverage for the treatment initially selected by the patient and their healthcare provider.
To help put an end to step therapy for eczema patients, the National Eczema Association (NEA) is advocating for the Safe Step Act in Congress. The Safe Step Act (H.R. 2630/S. 652) would ensure that patients can seek an exception if their health plan delays covering medically necessary treatment by requiring the patient to try and fail on a different medication first.
You can help push for the Safe Step Act by reaching out to your legislator and asking that they cosponsor the legislation. Use our quick, easy form to contact your legislator with two clicks.
Edward Taguba is a NEA Ambassador. If you’re an adult living with eczema or a caregiver of someone with eczema, join NEA Ambassadors.