Cuttack: The Orissa High Court on Friday directed AIIMS-Bhubaneswar to treat 15 children suffering from Duchenne Muscular Dystrophy (DMD), a rare genetic disorder, free of cost.
A division bench of Chief Justice S Muralidhar and Justice Chittaranjan Dash also directed the Ministry of Health and Family Welfare to reimburse the treatment cost.
The order came on a PIL filed by lawyer Anshuman Ray, who filed the petition on behalf of the parents of the 15 children suffering from DMD. Ray pointed out that there were no facilities to treat children with DMD in Odisha.
The rare genetic disorder is treated with antisense oligonucleotide (AON) therapy, which costs Rs 40 lakh to Rs 50 lakh per patient annually.
The HC asked the Director of AIIMS-Bhubaneswar to draw up a schedule for consultation of the 15 children with specialists for receiving AON therapy.
“This is to be done in consultation with Assistant Solicitor General of India (ASGI) P K Parhi as well as the petitioner’s counsel D P Dhal,” the order stated. The HC also sought an affidavit of compliance to be submitted on the next date of hearing on October 11.
What is DMD
DMD is a rare genetic disorder that leads to progressive muscle degeneration and weakness. It generally affects boys with symptoms manifesting in early childhood. Patients usually lose the ability to walk when they reach 8 to 12 years of age if left untreated.
