Ministry of Health Care discontinues medical treatment of death-sick woman
A complicated situation arose from an attempt to implement in Belarus a medicine for treatment of a rare genetical illness – mucopolysaccharidosis type VI. Those who are ill with it suffer because of the absence of a ferment splitting mucopolysaccharides, as a result of which the latter ones are accumulated in the body resulting in destruction of its organs and systems. The only way to prevent it is Naglazyme – a medicine that replaces the missing ferment. Despite the fact that the medicine has been successfully used in Europe and the US for quite a long time, the officials of the Ministry of Health Care decided to carry out an approbation first. The two patients who agreed to take part in the test were promised lifelong treatment.
However, with the beginning of the economic crisis the decision about the purchase of the expensive drug was reversed, and the medicine was called ineffective. The patients tried to appeal against this decision at court, but the court stated that it had no powers for consideration of the decisions of the Ministry of Health Care.
Both patients state that their health has considerably deteriorated for the six months that have passed since the cancellation of Naglazyme treatment. ‘I feel worse with every coming day’, says one of them, 28-year-old Tatsiana Matsiyevich. ‘I have almost lost my voice, it is hard for me to walk and my sight worsened rapidly. As there are no specialists dealing with problems of those who are ill with mucopolysaccharidosis and the Ministry of Health Care in fact turned us adrift, in October I had to go to a German clinic for consultation. Its specialist, who earlier diagnosed a considerable improvement, confirmed that after the cancellation of the treatment with Naglazyme the work of lungs and the sight got worse, the liver and the spleen increased in volume, but the most terrible thing is that the quick progress of cardiac defects. They said that I needed an urgent operation on replacement of the mitral valve. The operation must be done within the next 2-3 months. Otherwise it would be too late and I will have just a year of life left.’
All those who are ill with mucopolysaccharidosis have problems with lungs, spinal curvature and tracheostenosis. The difficulties with anesthesia during surgical operations on such people demand an experienced anesthesiologist. That’s why the German doctors recommended holding the operation in their clinic that has a great experience of operating on such patients. However, the cost of the operation in Germany is about 40,000 Euros. The Matsiyevichs don’t have such means and therefore address to the public with the request to make donations for saving the life of their daughter.
