CUTTACK: A PIL filed in the Orissa High Court has sought direction to the State government to set up proper diagnostic facilities and hospitals for early detection of Duchenne muscular dystrophy (DMD), a rare genetic disease prevalent in Odisha.
The PIL has also sought direction to the State government to set up healthcare facilities for cases of DMD and providing antisense oligonucleotide (AON) therapy to suffering children under the Biju Swasthya Kalyan Yojana.
HC lawyer Anshuman Ray who had filed the petition appeared in person in the court on Tuesday. The Court took note of the representation submitted by the petitioner to the Director of Health services on March 4 before filing the PIL.
Accordingly, the division bench of Chief Justice S Muralidhar and Justice RK Pattanaik asked the State counsel to take instructions from the State government on the petitioner’s representation before the matter is taken up for hearing on July 11.
Ray had submitted the representation on behalf of the parents of 15 children suffering from DMD expecting the State government to procure and provide AON treatment, which costs Rs 40 lakh to Rs 50 lakh annually.
Children suffering from DMD, a genetic disorder have progressive muscle degeneration and weakness. The disease almost 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 wheelchairs for mobility. The petition pointed out that there are no facilities for treatment of children suffering from DMD in Odisha. There are also no diagnostic laboratory facilities of DMD.