Three years he is only but Kyano Koppelmans Eindhoven has a lot of hospitals seen inside. The boy suffers from severe metabolic Morquio A syndrome. Medications that make pulling his life suddenly become too expensive.
The rare condition of the boy causes severe deformities of the skeleton and damage to organs. The disease is incurable. Patients on average only 30 years old and are often no more than a meter.
Medicine
Yet Kyano and his parents clung to medication. Medications that could make more bearable life. Until this week, because by Care Institute Netherlands (ZIN) has decided that the drug from the basic health insurance needs. According to the sense, the effects of the drug does not or not sufficiently proven. Because the medication up to half a million a year can cost, it does not pay for patients themselves.
High cost
Kyano's parents have great doubts about the results of the study of ZIN. According to them to make the decision especially with the high cost. Something that Hanka Dekker thinks of the patient organization for people with metabolic disease. ,, The drug has insufficient given the chance to prove himself. Especially with a young patient Kyano would be interesting to go through a few more years. "
The impact of discontinuing the medication for his Kyano must prove according to his parents with the passage of the years.
http://www.ad.nl/ By: Diede Hoekstra Photo: René Manders / photo Meulenhof.
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