BHUBANESWAR: The Orissa High Court on Friday directed AIIMS, Bhubaneswar to treat 15 children suffering from Duchenne Muscular Dystrophy (DMD). Acting on a PIL filed by lawyer Anshuman Ray, the division bench of Chief Justice S Muralidhar and Justice Chittaranjan Dash also ordered that the cost of treatment be reimbursed by the Ministry of Health and Family Welfare.
The HC asked the Director of AIIMS, Bhubaneswar to draw up a schedule for consultation of the 15 children suffering from DMD with specialists for receiving the antisense oligonucleotide (AON) therapy in a time-bound manner.
“This is to be done in consultation with Assistant Solicitor General of India (ASGI) PK Parhi as well as the petitioner’s counsel DP Dhal,” the order stated. The High Court also sought an affidavit of compliance to be placed on the next date of hearing, which is listed for October 11. Ray had filed the petition on behalf of the parents of the 15 children suffering from DMD expecting the State government would procure and provide AON treatment, which costs `40 lakh to `50 lakh annually.
DMD is a genetic disorder with progressive muscle degeneration and weakness. The disease always affects boys, and symptoms usually begin early in childhood. Children with DMD typically lose the ability to walk when they reach 8 to 12 years of age and need wheelchair for mobility.
The petitioner pointed out that there were no facilities for treatment of children suffering from DMD in Odisha. Since there are also no diagnostic laboratory facilities of DMD, he had sought direction to the State government to set up proper diagnostic facilities and hospitals for early detection of DMD.