Short- and long-term treatment with Scenesse (afamelanotide) improves life quality in adults with erythropoietic protoporphyria (EPP), according to the largest real-world study of its kind. The therapy’s safety profile among those over 70 was consistent with that of the overall patient population, with nausea, cold-like symptoms, headache, and fatigue…

Scenesse (afamelanotide) increases the time people with erythropoietic protoporphyria (EPP) or X-linked protoporphyria (XLP), two types of porphyria, can spend in the sun without pain, which may help improve their quality of life, a study has found. The study, “Afamelanotide for Treatment of the Protoporphyrias: Impact on…

A European Medicines Agency (EMA) committee has recommended that Scenesse (afamelanotide) be designated an orphan drug for the treatment of light sensitivity in people with variegate porphyria (VP). The implantable medication by Clinuvel is approved in the U.S. and European Union (EU) to treat people…

Clinuvel has been awarded a five-year contract with the U.S. Department of Veterans Affairs (VA) to supply Scenesse (afamelanotide) for the treatment of adults with erythropoietic protoporphyria (EPP). The implantable medication has been listed on the Federal Supply Schedule, a government-wide contract with commercial companies to provide…

Treatment with the implantable medication Scenesse (afamelanotide), which is approved to help reduce light intolerance in people with erythropoietic protoporphyria (EPP), also may help to reduce liver damage associated with the disease. That finding, in the study “Afamelanotide Is Associated with Dose-Dependent Protective Effect from Liver…

Treatment with Scenesse (afamelanotide) — an implantable medicine used to treat people with intolerance to light — can help improve life quality for those with erythropoietic protoporphyria (EPP), making it easier for them to do certain activities, such as going to work or on vacation, a recent study…

Ever since my son Brady was diagnosed with erythropoietic protoporphyria (EPP) in 2009, my greatest hope has been that someday there would be a treatment for this devastating disease. At the time, I didn’t realize how many stars would need to align for this to happen. But now it…

With spring upon us, the birds are singing earlier in the morning. The flowers and trees will soon bud. Our clocks have already “sprung” forward. The air is warm, and the sun shines brighter and longer than it has in months. But for some, the signs of spring…

Adults with erythropoietic protoporphyria (EPP) treated with Scenesse (afamelanotide) spent more time exposed to light in springtime, experienced less pain, and slept better, according to a small case-controlled study. These patients, who experience skin hypersensitivity to sunlight, tolerated increased broad-spectrum white light exposure in the spring months, the…

Real-world data support the effectiveness of Scenesse (afamelanotide) in extending tolerance to sunlight among adults with erythropoietic protoporphyria (EPP), a Swiss study found. Treatment with Scenesse increased damage-free light exposure from a median of 10 minutes to three hours. The study, “Increased phototoxic burn tolerance time and…