Vikas Sahu (M-8750704511), father of a two year-old boy, suffering from a rare and life-threatening lysosomal storage genetic disorder known as Gaucher’s disease, through Advocate Ashok Agarwal, has filed a petition in the Delhi High Court against the AIIMS, the Government of NCT of Delhi and the Central Government, seeking free treatment for his son, as he belongs to a poor family and is unable to afford the hefty cost of Rs.4.75 lacs per month of Enzyme Replacement Therapy.
The petitioner is a street-vendor of steel utensils and earns around a meager Rs. 3000 a month. He is the sole bread-winner for his family consisting of his himself, his wife, his parents and a 2-year old child Master Shiv.
Master Shiv was diagnosed of the deadly disease about six months back. He is in a critical condition with hepatosplenomegaly (enlargement of liver and spleen) resulting in protrusion of abdomen so much so that the child is finding it difficult to breathe, acute anemia (Haemoglobin 4.8 against a normal minimum of 11) and acute thrombocytopenia (platelets 19,000 against a normal minimum of 1,50,000). He also has a stone in the kidney to worsen his situation. He was recently admitted to AIIMS on 10.02.2015 and discharged on 17.02.2015. He has received blood and platelets transfusion at least four to five times so far. The doctors have recommended urgent initiation of Enzyme Replacement Therapy to save his life.
However the cost of Enzyme Replacement Therapy for Master Shiv at his present weight is estimated at Rs.4.75 lacs per month and would increase with increase in his weight.
“The inaction on the part of AIIMS, GNCTD & GOI in providing Enzyme Replacement Therapy free of cost to the poor petitioner’s son Master Shiv is violative of his Fundamental & Constitutional Rights to life, health and medical aid as guaranteed to him under Article 21 read with Articles 38, 39, 41& 47 of the Constitution of India,” the petition contends.
The petition will come up for hearing tomorrow.
Ashok Agarwal, Advocate
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