New Delhi: The Supreme Court Friday sought responses from the Centre, AIIMS and all states on a plea by 251 children suffering from muscular dystrophy seeking reliefs including a direction to them to launch a national programme for awareness and treatment of the rare and debilitating disease. Muscular dystrophy (MD) refers to a group of genetic diseases that cause progressive weakness and degeneration of skeletal muscles. These disorders vary in age of onset, severity, and the pattern of the affected muscles. All forms of MD grow worse over time as muscles progressively degenerate and weaken and many patients eventually lose the ability to walk. A bench comprising Chief Justice D Y Chandrachud and Justices J B Pardiwala took note of the submissions of lawyer Utsav Singh Bains and issued notices to the Centre and others on the plea.
The petition said the public at large needed to be educated about the disease and a standard policy or scheme for issuing unique ID cards be put in place for the patients so they could avail themselves of the treatment free of cost in government and private hospitals.
The plea also sought formulation of a policy to allow free prenatal test for pregnant women for prevention of birth of children with muscular dystrophy and setting up of gene therapy centres in every state capital and in union territories.
Medicines to treat muscular dystrophy should be made available free of cost, it said, adding trials for gene therapy be also started.
According to medical journals, a conservative estimate of overall prevalence of the disease is 29 people per one lakh population.
