Supreme Court seeks government strategy on muscular dystrophy

NEW DELHI: The Supreme Court on Friday sought to know from the Union government its plans about putting in place a national scheme for treatment of patients of advanced stage muscular dystrophy after entertaining a petition by parents of 251 children afflicted with this near fatal rare disease.

Appearing for the parents, advocate Utsav Bains informed a bench of CJI D Y Chandrachud and Justices J B Pardiwala that grade-I muscular dystrophy (MD) afflicted children, who show signs of it in tender age, is possible with one-time treatment that costs Rs 15 lakh, a sum provided by the government.

However, it is the late detection of the rare disease, due to absence of information and wide availability of medical technology, that creates both emotional and financial issues for the parents. Bains said that the grade-II and III muscular dystrophy treatment cost ranges from Rs 2-3 crore annually as medicines are imported from US and European countries with little chance of complete recovery.

The CJI-led bench said as medicines for this are not developed in India at present, there may be a need for framing a national policy. It sought the Centre's response to the PIL within four weeks and requested additional solicitor general Aishwrya Bhati to assist the court.

"All forms of MD grow worse over time as muscles degenerate and weaken. Many with MD lose the ability to walk. ...There are about five lakh such patients in India," the petitioners said.

Invoking the right to life, which encompasses right to health, the petitioners said there is an urgent need for framing of a national programme for children with muscular dystrophy and issuing each patient a unique ID to enable them get free treatment.