High-Cost Gene Therapy For Spinal Muscular Atrophy Remains Out Of Reach For Most In India

Highlights

   •  Gene therapy for Spinal Muscular Atrophy (SMA) is prohibitively expensive in India, with the life-saving drug Zolgensma priced at 16 crore rupees.
   •  Only a few children have managed to access treatment due to extreme costs and limited availability.

In India, treatment for Spinal Muscular Atrophy (SMA)—a rare genetic disorder—is nearly inaccessible due to its exorbitant cost. The gene therapy drug, Zolgensma, comes with a staggering price tag of 16 crore rupees, leaving many patients without viable options. However, Din Muhammad, a young boy from West Bengal, was fortunate enough to receive this crucial treatment.

Din was born into a modest family in East Medinipur. At six months, his mother noticed he had difficulty moving his arms and legs, barely able to lift his legs or move his hands freely. He also struggled to hold his head up, sit, or crawl. After consulting a local pediatrician and undergoing extensive tests in Kolkata, he was diagnosed with SMA.

According to Ravindra Pai, Managing Director at Peerless Hospital, treating SMA is a complex and challenging task. Peerless Hospital is equipped to provide SMA treatment, with dedicated doctors who work tirelessly to offer the best possible care to affected children. In East India, only three children have received Zolgensma so far—two at Peerless Hospital and one at NRS Hospital in Kolkata. Three more children, all under two years of age, are next in line for the therapy, with funding support being sought through crowdfunding.

Zolgensma, a breakthrough gene therapy, addresses SMA by targeting the loss of motor neurons in the spinal cord responsible for muscle movement. Although SMA is a rare disorder, it has an estimated worldwide prevalence of 1 in 8,000.