On March 24, 2023, parents of children with Duchenne muscular dystrophy (DMD), a deadly hereditary disorder. Assembled at Delhi’s Jantar Mantar to raise awareness of the condition and express their outrage at the government’s indifference. Since that the disease primarily affects males, the parents and other participants donned white t-shirts and badges with the phrase “Save Our Boys” printed on them.
The event brought together hundreds of wheelchair-bound children with the Duchenne muscular dystrophy and their parents from throughout the nation to address the horrific effects of the lethal disease and the urgent need for action.
Gene therapy and exon skipping into India to be sped up
Parents clamoured in unison for the importation of experimental medicines like gene therapy and exon skipping into India to be sped up. Their demands included the establishment of a powerful panel of health ministry officials, participation from parents of children with DMD, and free access to medical care and physiotherapy for all DMD kids.
In order to prioritise aid and support for those with “life-threatening disorders,” the speakers at the event urged the government to create a new category inside the National Policy for Rare Diseases 2021 (NPRD) for them.
The government can offer these patients financial assistance
The head of paediatric neurology at AIIMS, Delhi, Dr. Sheffali Gulati, commented on the function of the government by saying, “The government can offer these patients financial assistance so they can buy and import these more modern medications. Also, it may make the difficult process of getting the necessary drug regulatory authority permissions for the import of these more recent medications easier.”
Gulati emphasised the importance of developing new Indian management approaches for these kids, including both curative and supportive care.
Gurpreet Singh, who travelled all the way from Ludhiana, discussed the difficulties of parenting. “My child with DMD needs attention and support around-the-clock,” he stated. The youngster need assistance with everything, from feeding to sleeping on their side. Financial hardship on the family is exacerbated by high medical costs.