On Friday, Delhi's Jantar Mantar was witness to a unique protest against a sensitive cause – inviting Government of India's attention towards providing help in procuring the costly treatment for young lives fighting the most severe form of Muscular Dystrophy – Duchenne Muscular Dystrophy (DMD). The protest march was carried out by the parents whose children are suffering from DMD. They are seeking the government's assistance in the provision of medical treatment for their loved ones, in the absence of which, the children could be robbed of a chance to live a long, healthy life.
DMD is a rare progressive disease caused by a defective gene responsible for dystrophin, a muscle protein in a child's body. It is often found in boys even without a known family history. DMD is one of the most common as well as most progressive forms of muscular dystrophy. From the medical cost of INR 30,000-40,000 during the initial stages, genetic therapy during the advanced stages can cost upto crores of rupees, as medicines need to be imported from Europe or USA.
Though there is no absolute cure available for DMD, scientists at the University of Alberta have developed a new ‘cocktail' drug that could benefit up to 45% of patients with DMD. According to research published in the Proceedings of the National Academy of Sciences, this new class of drugs could provide an effective as well as economical treatment to those affected by this chronic muscle-wasting disease. The fact that the treatment is to be imported makes it so costly that the majority of parents would be unable to afford it. That is the reason why the parents are now requesting the government for help in this regard.
Explaining the severity of this disease, one of the parents, Amit Handoo, a resident of Gurugram, whose 8-year-old son Tanav is fighting a battle with DMD currently, said, "Parents from different corners of the country have come together at Jantar Mantar today, with just one aim. We want the GOI to pay the same amount of attention to finding an indigenous cure for DMD as it did in the case of the recent Coronavirus. The present cost of treatment of this disease is exorbitant as it runs into crores, which means that even after running from pillar to post, parents with limited financial means won't be able to procure it for their child." He further said that his wife and he were completely devoted to taking care of their son, who is finding it increasingly difficult to manage day-to-day activities on his own.
This is the situation of almost all parents, who often while working full-time jobs, also have to assist their children in daily chores like bathing, eating, using the toilet, and even changing sides while sleeping. As the disease progresses, children become wheelchair-bound, which further limits their movements. It is difficult to ascertain the hardships faced by these families, where the parents are forced to watch their children suffering right in front of their eyes while waiting for a costly cure to be invented.
Now, since a cure is in sight, it is becoming increasingly clear that the same isn't easily affordable for the majority of families with children suffering from DMD. Therefore, these parents gathered at Jantar Mantar on Friday, to seek GOI's help in providing an affordable cure to this dreaded disease by expediting research into DMD.