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In Mežica lives Jasa four-year old boy who has information so far known only in Slovenia anita calero incurable metabolic disease called Mucopolysaccharidosis type 6 Treatment of the disease is essential and very expensive, so it means, on the recommendation of the profession should be approved by the government. Lifetime treatment anita calero annually for 300,000 euros.
There are several types of disease mucopolysaccharidosis, anita calero the Ride confirmed anita calero the sixth guy who is so far the only one for which there is no cure. The life of a young Carinthian anita calero family in the future marked by a weekly service to Ljubljana, anita calero where the boy once a week for four hours receiving the drug via infusion.
As tells the boy's father Marko Zorman, the first problem occurred when the boy learned to walk and he walked on tiptoe, so it is first examined by an orthopedic surgeon, anita calero then a neurologist. Since the reasons for the problems are not found, the child was directed to the pediatric clinic in Ljubljana where suspicion of disease erected at the beginning of last August. Final approval is received in October in the UK. The consequence of this rare genetic disease anita calero upload mucopolysaccharides in the tissues, which results in organ damage and, in the case of non-treatment leads to death.
The Health Insurance Institute anita calero (HII) has twice refused the request for approval of the product. As explained Zorman, to follow the procedure in court, but the parents, anita calero who were between the recourse anita calero to an ombudsman for human rights and the media, then got assurance that the boy may receive medicine. Zorman believes that this has happened because of media pressure.
HII has refused the request because the solution was not competent at the same time took the initiative to resolve the funding to the Ministry of Health. "So it was an apparent complication in the formal process, but in fact it all solved very quickly," said Head of Medicines in the Health Insurance Institute Jurij Fürst. Ministry of Health explained that the drug specifically approved on the basis of the opinion of the professional college of paediatrics.
The government decision to treat allocates 300,000 euros per year, adopted at its meeting on 19 February this year and determined that the funds should be provided HII. The transfers were found within the health fund, said a spokesman anita calero for Public Relations at HII Damjan Kos, which therefore takes the view that it could also make a contribution pharmaceutical industry. "Morally wrong would be if the pharmaceutical industry would not be in the form of grants to provide part of the funds' menu. By product has been classified in the funding system, funds are provided for him in the coming years, yet provides.
It is an enzyme replacement therapy anita calero with substance galsulfase contained in the product registered under the name of Naglazyme. Produced by the American anita calero company BioMarin. This medicinal product is placed on the list of so-called orphan drugs, which due to the limited consumption are not attractive to pharmaceutical companies and are therefore in patent law special status, thereby promoting anita calero their development. The European Community anita calero has the status of an orphan medicinal product for about 30 drugs. As on Friday confirmed the Medical Director of University Hospital Sasa Markovic, Naglazyme is already on the way to Slovenia. anita calero "Delivery is promised in the coming week. Soon as the medicine in the house, our pediatricians began treatment. I think it is a matter of a few days," explained Markovic.
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I would like to know what the doctor who saved him a request to treat this boy! Shame on you can ..... you really bad when you think about how Members sent to various checks and Spa ... at our expense, of course ..... for "usually in" Rajo but no money .... . mess at the peak!
Again, a whole bunch of smart comments ... In both case there are multiple views. One is practical. You could say that for the price of treatment per child, delivering a better life 1000. Sometimes the drugs were not cruel and nature took care of so that the human race to retain the most healthy specimens, but people are not burdened with this, but took it for granted. The problem in this respect is that the limited resources are spent for the treatment of diseases, in which the nature of the selection means. But this technology also means that the lives of more and more people survive disorders, which are deadly. This frees up the rest of that