NEW DELHI: For 31-year-old Aman (name changed), his treatment is not optional. It is for survival. But the one drug that lets him win against thalassemia every day is often missing in govt hospitals.“We are not getting Desferal injections regularly, and when we buy them, the cost is very high. One box costs nearly Rs 2,900 and lasts only a few days. Since we need it continuously to remove excess iron from repeated transfusions, missing doses is not an option,” he said.Across major govt hospitals, patients echoed Aman’s distress.Amit (name changed), 37, who is undergoing treatment at Lady Hardinge Medical College (LHMC), requires three vials a day, five days a week. Sanjay, at LNJP Hospital, needs four vials daily. For both, the cost is unsustainable when the drug is unavailable in govt hospitals.“The unavailability problem has been there for the last five to six years. Occasionally, the drug can be procured locally and is supplied for a short period — maybe for a week— but there is no regular supply… in public hospitals,” said thalassemia patient Mayank Arora.Officials at LHMC said, “The injections are imported and we floated a tender for procurement three months ago, but got no response. We have also tried sourcing them through local purchases, but availability is inconsistent. While the injections are provided free of cost at the hospital, there is little we can do in the current situation.”Families are forced to buy from the private market, where prices are prohibitive. For a condition like thalassemia, this creates a vicious cycle. More transfusions increase iron overload in the body, and without drugs like Desferal (deferoxamine), the iron can damage vital organs.Patient groups say repeated representations have not helped.“As we approach World Thalassemia Day on May 8, this is a wake-up call. A lifesaving drug has been missing from govt hospitals for years. It is out of patent and should beavailable as a generic. We cannot lose lives to a drug shortage and still call ourselves the pharmacy of the world,” said Deepak Chopra, president, Thalassemics India.Official responses give the opposite view. In Parliament, govt has said there is no shortage. A 2025 Rajya Sabha reply stated that no shortage of thalassemia drugs had been reported in major hospitals.In 2016, authorities said complaints of shortage were limited and the manufacturer had confirmed adequate supply.A communication from National Pharmaceutical Pricing Authority in May 2025 reiterated that the manufacturer had reported sufficient stock.A Novartis spokesperson said that currently there is no shortage of Desferal in India.Chopra, said: “It is easy to hide behind the claim that the drug is ‘available’, but for a daily-wage worker with a thalassemic child, asking them to buy even a single vial from a chemist is unrealistic. Govt must investigate why the manufacturer is not participating in tenders.”Doctors say the drug is critical for managing iron overload. Without regular access, complications can escalate quickly.For Aman and thousands like him, the issue is stark: when the drug disappears, so does the margin for survival.
