No headway in treatment of 16 DMD affected children

CUTTACK: The issue of treatment of 16 children suffering from Duchenne Muscular Dystrophy (DMD), a rare genetic disease, returned  to focus on Thursday as there was virtually no change in situation of the patients despite orders from Orissa High Court.

Earlier on September 9, the court had directed AIIMS-Bhubaneswar to provide treatment to fifteen children with reimbursement of treatment cost by Government of India’s Health and Family Welfare department. On October 11, an identical order was issued in the case of another child suffering from the same disease.

The court issued the orders on petitions seeking directions to the central as well as the state government to provide Antisense Oligonucleotide (AON) therapy free of cost to the children at various locations in Odisha.

When the matter came up on Thursday, the court found that the Government of India’s Health and Family Welfare department had filed an affidavit on November 9 saying the patients suffering from rare diseases like DMD have to approach the nearest COE from where they can expect treatment.

AIIMS-Bhubaneswar is not a COE but whenever it makes a recommendation, the patient can get treatment at the nearest COE where the facility is available, the affidavit said. Under the extant policy AIIMS-Bhubaneswar can provide financial assistance up to Rs 50 lakh per patient, it added.