The parents of children suffering from Duchenne Muscular Dystrophy (DMD), a fatal genetic disease, gathered at the Jantar Mantar on Friday to raise awareness about the disease and register their dissent against the government's apathy.
The protesting parents demanded to expedite the process of bringing experimental treatments like gene therapy and exon skipping to India and to create an empowered panel with representatives from the DMD parents to remove the bottlenecks that delay this process.
They also demanded to amend the rules so that reimbursement of medical expenses related to the treatment of this disease is not denied by the insurance companies. The government has identified hundreds of rare diseases under the National Policy for Rare Diseases 2021 (NPRD). The parents demanded that within the rare diseases category, a separate category should be made for 'life-threatening diseases' to prioritise help and support for them.
Elaborating on this life-threatening diseases, Sheffali Gulati, head of pediatric neurology at AIIMS Delhi, said, "The government can provide financial support to these patients in procuring and importing these newer medications. It can also help in easing the cumbersome process of obtaining the requisite approvals from the drug regulatory authorities for the import of these newer drugs."
Gulati also stressed the need for creating innovative models of management in these children, for both curative management as well as supportive care.
DMD is a muscle-wasting disease that first starts with the weakening of leg muscles. The disease in the form of a defective dystrophin gene (which hinders the production of very vital dystrophin protein) can be there since birth. Growing rapidly, soon it engulfs every muscle of the body, including the heart and lungs.
The parents and others who joined the protest wore white t-shirts and badges with 'Save Our Sons' written on them, as the disease mainly affects boys.
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