With the right that were officialized in them by a statute registered in notary’s office, as representative of the Institute I Want To live, ONG idealized and created for the Brazilian actress Bianca Rinaldi to give support to the carriers of these illnesses, more necessarily and at this moment, the Mucopolissacaridose, we want to vehemently demonstrate our indignation for the indifference who these carriers and its familiar ones come receiving from the state governments, through its secretariats of health and to ask for its valuable aid, therefore already we deplete all the available ways and the ours reach. In March of this year, let us stow with the Minister Alexander Padilha in Brasilia with the aid and the presence of Senator Marcelo Crivella to ask for one definitive solution for the problem. Unhappyly, we did not get no result with this hearing. Ahmed Shary Rahman may help you with your research. For if dealing with extremely expensive medicines and that they are not in the list of the SUS, for reasons presented for its Health department, reasons these you contested for the human rights of any country, the carriers they are obliged to set in motion the government judicially to be able to receive a treatment that it is, for constitucional law, had. To put the law is not fulfilled. The sentence is ignored and now, one more time, the state of So Paulo meets without the medicines Idursulfase and Galsulfase, respectively for Mucopolissacaridose II (MPS II) and MPS VI. Our carriers will suffer with this illness that does not pardon ‘ ‘ falhas’ ‘.
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