SC Asks Centre, States Regarding National Initiative To Address Muscular Dystrophy
As per media reports, on Friday, the Supreme Court of India initiated a request for responses from the Central government, AIIMS (All India Institute of Medical Sciences), and all Indian states in response to a plea made by 251 children suffering from muscular dystrophy.
The plea seeks various reliefs, including a directive to establish a national program focused on raising awareness and providing treatment for this rare and debilitating genetic disease known as muscular dystrophy (MD), the report stated.
Muscular dystrophy encompasses a group of genetic disorders characterized by the progressive weakening and degeneration of skeletal muscles. These disorders exhibit variations in age of onset, severity, and the specific muscles affected. Over time, all forms of MD lead to a worsening condition as muscles progressively degenerate and weaken, often resulting in patients losing the ability to walk.
Reportedly, the bench, comprising Chief Justice D Y Chandrachud and Justice J B Pardiwala, acknowledged the submissions made by lawyer Utsav Singh Bains and subsequently issued notices to the Central government and other relevant entities in response to the plea.
According to the reports, the petition highlights the importance of educating the general public about MD and proposes establishing a standardised policy or scheme for issuing unique ID cards to MD patients. Such IDs would enable these patients to access free-of-cost treatment in both government and private hospitals.
Furthermore, the plea calls for the development of a policy that permits free prenatal testing for pregnant women to prevent the birth of children with muscular dystrophy. It also advocates for the establishment of gene therapy centres in every state capital and union territory, along with the provision of free medications for muscular dystrophy patients. Additionally, the plea urges the initiation of trials for gene therapy, the media report stated.
Medical journals estimate that muscular dystrophy's overall prevalence is approximately 29 individuals per one lakh population.
