Skin disorders rarely make it on the list of big-time diseases, so when we saw a study saying that psoriasis costs the nation $52 to $63 billion a year, it was hard not to think, "Really?"
Indirect costs such as lost work hours and unemployment make up another $24 to $35 billion, the study found. Then there are the costs of associated health problems like heart disease and depression, at $35 billion. That's a lot of money for something that could easily be dismissed as a rash by those of us who aren't up to speed on psoriasis. But as those numbers suggest, we'd be wrong.
Psoriasis is an autoimmune disease that affects about 3 percent of the population; its most obvious manifestation is thick red or scaly skin patches, caused by skin cells dividing too fast. About 10 to 20 percent of people also get an inflammatory type of arthritis, according to the Centers for Disease Control and Prevention. It's a chronic disease, and there's no medication that cures it. Treatments range from over-the-counter skin moisturizers to try to tame the cracking and scaling to ultraviolet light therapy, traditional systemic drugs like methotrexate, and newer biologic drugs that target parts of the immune system.
Bottom line: There are millions of people dealing with a chronic illness that can be disfiguring and disabling. To find out it's like to deal with psoriasis, we called Todd Bello, a 51-year-old from Stony Brook, N.Y. When he was diagnosed with psoriasis at age 28, he started going to the doctor several times a week and trying different treatments.
Bello worked as a letter carrier for the Postal Service, coached his children's soccer games and volunteered as a firefighter and EMT. The psoriasis made his skin crack and bleed when he got in and out of the postal truck. His feet swelled to the point that he couldn't wear shoes. Eventually had to retire on disability. "It's very frustrating for a person who needs to make a living," Bello told Shots. "I'm very fortunate and grateful that my wife has a great job and we're able to pay for the medication I need."
Bello volunteered for several clinical trials for experimental psoriasis drugs. One failed to help. Another, Raptiva, worked wonderfully, Bello says, but was taken off the market because it increased the risk of deadly brain infections. "I wasn't very happy at that point," he says.
He tried Enbrel, another biologic; didn't work. But a third, Stelara, banished symptoms for five years. "Unfortunately, it was temporary," Bello says.
And the temporary reprieve was expensive. "Over the five years it was like $250,000," Bello says. His health insurance paid most of that and the company that manufactures the drug helped cover copays. "If somebody doesn't have insurance they wouldn't be able to afford it."
The JAMA Dermatology review found that maintenance drugs cost $11,029 a year for people using traditional drugs, and $26,708 for biologics, based on 2010 numbers.
Bello recently had to stop yet another biologic when it caused kidney problems and elevated liver enzymes. "I feel like a tomato right now because my skin is so inflamed," Bello says. After taking a shower this morning, the towel had blood all over it. "I'm just watching it take over my skin."
Several pharmaceutical companies are testing drugs that target a different molecule in the immune system, interleukin 17, that has been linked to the skin inflammation of psoriasis. "I'm very excited about that," Bello says.
Copyright 2016 NPR. To see more, visit http://www.npr.org/.