Canadian Association for Porphyria

Porphyria Treatment

Treatment for Erythropoietic Protoporphyria (EPP)

October 2017 Update: 
Please Note: Canadians are not yet able to access Scenesse as a treatment although it is now available in Germany, Switzerland and the Netherlands. The company, Clinuvel Pharmaceuticals, has applied to the FDA in the United States for approval to treat Erythropoietic Protoporphyria with Scenesse. For more information, see the American Porphyria Foundation website.

2017 Research for effectiveness of afamelanotide

2017 SCENESSE Package leaflet: Information for the patient 

SCENESSE® is an injectable controlled-release implant formulation containing 16mg of afamelanotide, a novel molecule from a family of drugs known as melanocortins. SCENESSE® is the first melanocortin approved by a leading regulatory authority for the prevention of skin burns and symptoms in EPP. The drug provides anti-oxidative effects and activates the skin’s dark pigment, eumelanin, providing EPP patients with a biological barrier between their skin and the various wavelengths of light triggering phototoxic reactions.

The clinical relevance of SCENESSE® is to facilitate patients to expose themselves to light and UV, preventing them from incurring the characteristic burns seen in EPP. SCENESSE® has been clinically trialled in over 900 patients, including 350 adult EPP patients. In October 2014 the European Medicines Agency recommended approval for SCENESSE® under exceptional circumstances.

About erythropoietic protoporphyria (EPP)

EPP is characterised by severe phototoxicity (absolute intolerance to light) of the skin resulting in intolerable pain, swelling, scarring and a state of distress. During phototoxic episodes patients experience long-term swelling of the exposed body surfaces such as the face, hands and feet. A severe reaction – triggered by exposure to light, particularly UV light – may result in hospitalisation. Patients do not respond to any analgesics or medication and following light exposure are typically unable to function. Due to the known risk to light and UV, patients often lead lifelong an isolated indoor life deprived of normal activities.

Scenesse is available through Clinuvel.

Source: Clinuvel

Last Updated: 13/October/2017

Medical Disclaimer

Care has been taken to ensure that the information on this website is accurate at the time of publication. This information is, however, intended for general guidance only and is not meant to substitute consultation from a recognized health professional. The Canadian Association for Porphyria/Association Canadienne de Porphyrie disclaims for itself and for the author of this information, all responsibility for any mis-statements or for consequences of actions taken by any person while acting on information contained herein. Physicians and patients must make their own decisions about therapy according to the individual circumstances of each case.

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