Living a life without sun? Help us to get access to medication.
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Have you ever thought of living without sun? Frightening isn’t it? It is not unreal, but a life burden that some of us have dealt with since childhood.
We are a group of people affected by Protoporphyria Erythropoietic, a rare condition which does not allow us to live normal lives. Our blood is abnormal and burns immediately when exposed to sunlight, thus corroding our skin from within. All of this happens in less than 5 minutes of sun exposure. If you thought how this could impact our summer holidays, rest assured, the problem goes far beyond that. This health condition compromises everything you would normally do on a sunny day: Pulling up the shades in your house to let light shine, walking in the sun to go to breakfast, driving to go to work or taking the kids to school, parking wherever you want even if just a block away from your destination, and so on and so forth. In short, unlike people who live normal lives, we must avoid sun light exposure every day. A beautiful and pleasant sunny day is nothing but a life threat to us, a daily nightmare that has cursed us since childhood and made us give up many things in life.
There is an antidote that many of us were able to try. It’s called Afamelanotide, and allows us to walk in the sun, take our kids to school and even play with them at the park. It allows us to get to work done safely or even go out on a Sunday afternoon instead of being locked in the dark rooms of our homes.
This medicine is new, we have tested it on our skin, and it works. We have been monitoring its production from start to finish until the latest positive consensus by the Italian Pharmaceutical Agency which just last month (date?) stated the approval on the Official Gazette Of The Italian Republic (year#157, issue#95).
We were confident this delicate matter was finally concluded.
We thought we had access to our precious medication…
Unfortunately, it isn’t true. The struggle continues. Just yesterday we received terrible news: Afamelanotide is once again subject to termination due to a budget issue and price bargaining. The danger of not having access to Afamelanotide will again deny us to have a close-to-normal life.
We want to open this petition and send a clear message to AIFA which will promptly have to decide whether or not to finally approve Afamelanotide and raise awareness of this disease that takes the sun and health away from our lives.
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