Association of quality of life measures with afamelanotide treatment in patients with erythropoietic protoporphyria and x-linked protoporphyria: A retrospective cohort study.

To the Editor: Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP; EPP/XLP) are uncommon inherited heme-synthesis disorders characterized by painful cutaneous photosensitivity reactions from light-induced activation of accumulated protoporphyrin IX. Afamelanotide is the only medication with clinical effectiveness, favorable safety profile, and significantly improved EPP-specific quality of life (QoL; EPP-QoL).1,2 However, full year-round symptom control is challenging in certain subgroups because of restrictions imposed by insurance companies on dose and frequency.