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"‘National Policy of Rare Diseases' has not reached, many patients inasmuch as the cost of the treatment is still very high and runs into several crores for one patient and remains out of reach of a common man Like the Petitioners...", the plea submits
Supreme Court has issued notice to the Union of India in a plea filed by parents of children suffering from Muscular Dystrophy, seeking a comprehensive plan to deal with the disease.
Muscular Dystrophy which affects mainly young boys is a genetic disease that causes progressive weakness and degeneration of skeletal muscles.
As Advocate Utsav Bains was taking court through the petition, the CJI remarked, "We know about Muscular Dystrophy, Stephen Hawking had it.."
A bench comprising CJI DY Chandrachud, Justice JB Pardiwala and Justice Manoj Misra then went on to issue notice on the plea making it returnable within four weeks.
Court has also directed Additional Solicitor General Aishwarya Bhati to assist court in the matter.
"In India there are about 5 lakhs such patients. But due to lack of awareness, lack of testing facilities, no clinical, trials of the drugs and high cost of treatment the Petitioners and other unfortunate parents are helpless and have to be mute spectators sadly witnessing their children die each day and an untimely death as well...", the petition states.
The plea seeks a direction to the government to come up with a National Program for children with Muscular Dystrophy for treatment of children with Muscular Dystrophy at national level and spread awareness about the disease and to educate the public at large.
A further direction is sought to formulate a standard Policy /Scheme for issuing Unique ID Card to the patient of Muscular Dystrophy to enable them to get free treatment at any government or private hospital in India
"Formulate a policy to conduct free pre-natal test for pregnant women for prevention of birth of children with Muscular Dystrophy and to take steps to conduct Gene Therapy Centre in every state capital and union territories for children with Muscular Dystrophy disease free of cost", it is further sought.
Case Title: Ratnesh Kumar Jigyasu and Ors vs. Union of India
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