Parents and friends appeal to the authorities in support of Dariusz Majewski

Darek Majewski

3,5-year-old Dariusz Majewski suffers from a rare disease – Mucopolysaccharidosis type II. The cost of treatment is estimated at over a million litas. The cure that may inhibit the development of the disease is not reimbursed in Lithuania. The boy’s parents and people sensitive to his fate petitioned Lithuanian authorities.

‘The drug that can help our son and other sick people is I2S (Elaprase). (…) It is indispensable to stop the developing physical weakness and to sustain his life.

‘Elaprase’ is not reimbursed in Lithuania whereas in many countries of Europe people suffering from Hunter syndrome are provided with reimbursement. Without this drug Dariusz Majewski and other sick children in Lithuania are condemned to death’ – is written in the petition.

In the petition people appeal to the authorities of Lithuania for the drug to be placed in the list of reimbursed drugs and the patients to be provided with a special medical and social care from the country.

All people willing to sign the petition can do that here.

3,5-year-old Dariusz Majewski suffers from a serious and rare disease – Mucopolysaccharidosis type II. This disease relates to metabolic disorder and it is the first such case in Lithuania.

Lithuanian Health Care System refused to reimburse the drugs; the refusal is justified by the fact that the disease is incurable and the costs of treatment are very high.

The price of drug for a 20 kg child amounts to an approximate cost of 1,5 million litas per annum. The older the person is, the higher the costs are.

Source: http://pl.delfi.lt/aktualia/litwa/rodzice-i-przyjaciele-apeluja-do-wladz-w-sprawie-dariusza-majewskiego.d?id=60544545

Tłumaczenie Barbara Rożek w ramach praktyk w Europejskiej Fundacji Praw Człowieka, www.efhr.eu. Translated by Barbara Rożek the framework of a traineeship programme of the European Foundation of Human Rights, www.efhr.eu. 

 

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