The Delhi High Court has asked the Ministry of Health and Family Welfare and the All India Institute of Medical Sciences (AIIMS) to obtain instructions on how two minor brothers suffering from a rare disease could be provided free treatment.
Justice Prathiba M. Singh listed the case for further hearing on February 19 along with various other pleas filed on behalf of several children suffering from other rare diseases.
The two children, who are two and three years old respectively, are suffering from Mucopolysaccharidosis II or MPS II (Hunter Syndrome, Attenuated Type) which is a rare disease that is passed on in families. It mostly affects boys and their bodies cannot break down a kind of sugar that builds bones, skin, tendons and other tissues.
Cost of treatment
They have approached the High Court seeking direction to the Centre and AIIMS to provide them uninterrupted treatment free of cost.
The two brothers, in their separate petitions filed through their father Ravi Jhawar, said they started facing difficulties and certain changes in their bodies in September and December 2019, respectively, including delayed speech and language problems.
The plea said the children were examined by doctors at the Sir Ganga Ram Hospital and AIIMS and after examination and tests, they were diagnosed with MPS II. It added that the treatment of the rare disease is available and administered at AIIMS.
The petition said the annual cost of treatment for one patient would be between ₹80 lakh to ₹1 crore and the income of their father is nominal and it would be impossible for him to bear the cost of treatment.
“Without the financial support of the respondent no. 1 [Centre], the petitioner cannot be medically treated in view of paucity of funds. The petitioner is only concerned with medicine and not with any direct financial help,” the petition said.
