Petition · past parliament
Fund afamelanotide on the NHS to treat erythropoietic protoporphyria
Closed
1,204 signatures
What the petition asks
Erythropoietic Protoporphyria is a life changing genetic condition, your body has a reaction when exposed to UV and visible light. You can't go out without covering head to toe, just to be able to leave the house. Inside all blinds must be closed, also lights to be checked. No prevention or cure.
Reactions mean weeks of agony. You feel like your blood is on fire, pain beyond words that no medication touches. Skin dries and cracks. You can’t talk, eat, and struggle to drink. It can also lead to liver failure and Vitamin D and iron deficiencies.
There is a treatment that works and other countries are using it but NICE has said no, because it’s too expensive. We are pleading for the government to fund this treatment and give EPP sufferers a chance of a normal life
There is a treatment that works and other countries are using it but NICE has said no, because it’s too expensive. We are pleading for the government to fund this treatment and give EPP sufferers a chance of a normal life
Timeline
| 16 Aug 2018 | Petition opened for signatures |
| 16 Feb 2019 | Closed to new signatures |
Key facts
Signatures
1,204
Status
Closed
Opened
16 Aug 2018
Closed
16 Feb 2019
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Source: the official petition page. Last checked 15 Jul 2026.