Italy seems to be online. At least 140 patients according to this article.
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Afamelanotide available again. The sun shines for patients with Protoporphyria
OF INSALUTENEWS · July 21, 2016
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First plant of the year this morning at San Gallicano, Reference Center for Porphyria leaders. Branca: "Thanks to AIFA and to the Region for having authorized the release of the drug distribution to patients of Lazio and also for the sick outside the region"
torque-guys-scaleRoma, July 21, 2016 - Good news for patients suffering from Protoporphyria Erythropoietic (EPP): green light to the use of this medicine "Afamelanotide". So far this year, in fact, the distribution of the drug had been blocked. A price four times higher than established by AIFA was asked by the manufacturer to each individual system, and this has caused an objective difficulty for patients in getting the therapy.
Now, thanks to the commitment of the General Directorate of the IFO Institute Regina Elena and San Gallicano, and the Lazio Region has obtained the rights to the rig, at the San Gallicano, for 21 patients living in the Region. But not limited to, the Lazio Region has authorized, by agreement with other regions, also treat patients outside the region. There are at least 140 in Italy those affected by the disease.
It is so that finally this morning at the Porphyria Centre Rare Diseases and ISG, directed by Giovanni Leone, was made the first plant of the season on a patient with EPP.
The Protoporphyria Erythropoietic is a rare disease that prevents the sun exposure, and is especially debilitating in the summer, it can also result after a few minutes of sun exposure the erythema and burns all over his body. The one and only existing cure for the disease is the subcutaneous implantation of Afamelanotide drug.
"I am very proud - said Marta Branca, special commissioner IFO - with the result. I want to express gratitude to AIFA and the Lazio Region for having authorized the release of the valuable drug distribution. With the plant this morning at the San Gallicano it puts an end to the ordeal and suffering of these our patients' rare ''.
A rare disease, unknown even to many medical specialists who often mistake the symptoms for trivial photosensitivity, urticaria or special solar erythema. Until 2008 there were no cures for Protoporphyria Erythropoietic (EPP). The patients did not respond to steroid therapy, to antihistamine therapy, it 'to painkillers and had to settle for simple compresses of cool water for relief. But in 2008 its San Gallicano Institute was held the trial of the new drug Afamelanotide, now available in a few centers in the world and in only three centers in Italy including the San Gallicano, one of the Old South.
It is to administer a subcutaneous implant the size of a grain of rice that stimulates the production of melanin and make sure that these parties take symptoms, at least until they are covered by the drug. From here you understand the importance of not deprive patients of the therapy, which would force them to not have a normal life in the open air.
In an effort to solve the problem of the drug block, because of the price quadrupled by the manufacturer, the extraordinary Marta Branca Commissioner has promoted since early this year to AIFA meeting, with the participation of the Institution San Gallicano, the doctors involved and the patients association, to find a solution to the problem.
"The association of the EPP patients - declares Branca- has also played a key role in informing all patients residing in different regions about their rights and to create a coordination. Today, after so much trouble and thanks to the support of the Lazio Region, we can claim to have won the battle, being able to re-administered to our patients the drug saves - quality of life ".
"This EPP - precise Giovanni Leone - represents the limiting case as regards the treatment of pathologies induced by exposure to sunlight, which include less severe and less rare, affecting a wide segment of the population and for which it is operating the clinic dedicated to the diagnosis and treatment of photodermatosis active this year at the Porphyria Centre of the San Gallicano ".
Source: Press Office
