Aug. 30, 2011 -- For Robert Saupe, there was never any such thing as fun in the sun. He has a condition called erythropoietic protoporphyria, or EPP, a rare disease that causes extreme sensitivity to sunlight and certain types of artificial light.
"I don't go outside without having a long-sleeve shirt on, a hat, a bandanna and gloves," he said.
EPP is caused by elevated levels of porphyrins, the chemicals responsible for the synthesis of hemoglobin, the protein that carries oxygen in the blood, producing a toxic reaction to the sun. After the skin is exposed for only a short time, it can turn extremely red and develop symptoms of intense itching, swelling and burning.
EPP is especially challenging for Saupe in the summer, since he works outdoors as an excavator.
"On the hot days wearing all that -- it's exhausting," said Saupe, 45. "There are times I want to pass out."
But a tiny implant helped Saupe finally enjoy the joys of summer that most people take for granted. The implant, called Scenesse, increases the levels of melanin in the skin, which provides protection against ultraviolet rays. The protective effect lasts about two months, according to Clinuvel, the drug's Australian manufacturer.
"I got to live an normal life," said Saupe, 45. "I got to go in the lake with my granddaughters and we had a lot of fun."
There are few treatments available for EPP. According to the American Porphyria Foundation, beta-carotene is the most effective therapy available, and acts by making the skin less sensitive to sun.
Disease Therapy That Comes With a Tan
Dermatologists say while it's too early to know how safe Scenesse will be in the long run, results from early clinical trials show promise.
"It's definitely novel," said Dr. Elma Baron, a dermatologist at University Hospitals Case Medical Center in Cleveland. "So far, it's been safe and effective."
While it may show some benefit against EPP and other skin diseases, the protective effect may not extend to all conditions.
"There's no proof it can be effective for skin cancer," said Dr. Michel McDonald, director of Cosmetic Dermatology at Vanderbilt University Medical Center, who worries that increasing the levels of melanin could increase the risk of developing melanoma, although there's no evidence of that yet.
The drug was once available as an injection, but the effects didn't last long.
One side effect of the drug is its ability to make skin darker because of the melanin. But doctors warn there is no indication right now that it could be a safe way to tan.
"People are always excited when there's a product that can induce tanning without the risk of additional UV light," said Baron. "I'm interested in seeing how the clinical trials demonstrate safety, but at this point, it's too early to tell whether it can be used for that indication."
McDonald also warned against trying other similar products on the market.
"There are mimickers of this product out there, and they can be dangerous," she said. "This product isn't out yet, and safety hasn't been fully evaluated."
Right now, the company is not marketing Scenesse for tanning. Clinical trials are under way for other skin conditions, including vitiligo, the condition that causes irregular skin pigmentation.
Saupe's desire to see Scenesse brought to market has nothing to do with his desire to get a tan. For him, it's about living out dreams he never believed he even had.
"It would be totally life-changing," he said. "I never had dreams before last year. I always knew I was very limited about what I could do. To think I could actually be able to go buy a motorcycle and drive across the country, or go on a cruise with my wife -- I'd never thought about those things before."