2023-04-23 08:55:46
Achitz: Rare disease means burns following a few minutes in the sun, treatment must be possible throughout Austria
Vienna (OTS) – A hike on the mountain, a walk in the park, a beer in the sidewalk café. Many people look forward to this in spring. Patrick M. has had no reason to do so so far. The 31-year-old suffers from “shadow jumper disease”, meaning that any exposure to the sun means pain and burns for him. There is a drug once morest it, but it was not approved for him. M. turned to the Ombudsman Board. Ombudsman Bernhard Achitz made the ORF program “Bürgeranwalt” aware of Ms fate. The Styrian hospital operator KAGes examined the case once more following inquiries from the Ombudsman and ORF and now approved the expensive treatment. Patrick M. may now be able to plan the long-awaited “small trip around the world”. Ombudsman Achitz: “If the drug is effective, then everyone affected must get it. We need a uniform solution across Austria. The drug is currently only available in Graz and Innsbruck, and that needs to be expanded.”
The shadow jumper disease, scientifically: erythropoietic protoporphyria (EPP), is a very rare genetic metabolic disease in which those affected react to sunlight with severe pain and sometimes visible burns following just a few minutes. You must wear long sleeves even on the hottest summer days and protect yourself with gloves, a scarf and a shawl in front of your face. In Austria, 25 to 60 people are likely to be affected.
A drug, on the other hand, has been approved since 2014. It currently has to be implanted under the skin in the hospital and is very expensive. A treatment costs 14,500 euros, up to six per year may be necessary. Achitz: “If you can spend a few hours outdoors instead of a few minutes, that means a significant improvement in the quality of life. Now it is important to offer the treatment throughout Austria and to check whether it is not also possible with resident doctors. In this case, the federal states and the social security funds should also plan what a cost sharing might look like. Because it must not be that those affected are sent back and forth when it comes to treating an illness.”
SERVICE: The Ombudsman Board is under post@volksanwaltschaft.gv.at and on the free service number 0800 223 223.
Questions & contact:
Ombudsman Board
Florian Kräftner
Media spokesman in the office of Ombudsman Mag. Bernhard Achitz
+43 664 301 60 96
florian.kraeftner@volksanwaltschaft.gv.at
volksanwaltschaft.at
1682242056
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