Pandemic isolation and EPP – A commentary

During the pandemic crisis, the value of a normal life, and the pain of losing it, has become acutely apparent as the same feelings of confinement and isolation that are so typical of EPP have emerged in the general population. Societies are facing limitations similar to those experienced by patients with EPP on a daily basis. Forced in domestic self-isolation and with the danger of an insidious virus lurking outside, many are struggling to adapt to this new life deprived of the freedom of going outdoors, meeting with friends and family, and leading the normal daily existence that was taken for granted before the coronavirus. Many realize now how valuable it would be to have an additional few hours outdoors, free from having to fear the devastating consequences of the virus. Replace the virus with the sun and you have life for patients with EPP: The sun is the virus that accompanies patients with EPP for their entire life, forcing them into a life of isolation and pain. And just like everyone around the world is anxiously waiting for a vaccine or a treatment to combat the virus, many patients with EPP today, five years after its first regulatory approval, are still anxiously waiting to access the only therapy that allows them to exit their isolation and lead a normal existence. For patients with EPP, afamelanotide is their vaccine, their treatment against the devastating consequences of the sun, their virus.

I hope that breakthrough advances in medicine will soon free humanity of COVID-19 and, while many will be able to regain their freedom to enjoy a life outdoors without fear of the coronavirus, I also hope that all patients with EPP will finally be able to break free from the confinement of their condition and their fear of the sun. I therefore urge societies and decision-makers to take the lessons of the pandemic to heart and to not leave patients with EPP alone, locked down in social isolation and in a life of fear of the sun, enabling them to access afamelanotide, a breakthrough medical advancement in the treatment of EPP.

Dr. Rocco Falchetto, President of the IPPN