In a development that could place thalassaemia patients at serious health risk, a key drug used to treat the blood disorder has been missing from leading central and Delhi government hospitals in the Capital for several months.
Thalassaemia, a genetic blood disorder that causes severe anaemia, requires patients to undergo regular blood transfusions along with a life-saving iron chelation therapy using Desferal (deferoxamine).
Ground investigations by The Tribune have revealed that this essential drug is currently unavailable at the Centre-run Lady Hardinge Medical College (LHMC) as well as Delhi government facilities, including Lok Nayak Jai Prakash Narayan (LNJP) Hospital and Guru Teg Bahadur (GTB) Hospital.
The stock-out has left patients struggling to access treatment, raising the risk of serious complications due to iron overload.
The Tribune has learnt that the Union Ministry of Health took note of the shortage last week and convened an emergency meeting with officials from three major central government hospitals — Ram Manohar Lohia Hospital, Safdarjung Hospital and Lady Hardinge Medical College.
The meeting was also attended by representatives of patient support groups, including the National Thalassaemia Welfare Society and the Thalassaemia International Federation.
The Director General of Health Services, who chaired the meeting, is learnt to have decided to call drugmaker Novartis for discussions on the reported shortage.
Anubha Taneja, a member of the Thalassaemia Patients Advocacy Group (TPAG), who attended the meeting, said, “Heads of departments from the hospitals concerned were called, along with officials from various government departments. It was decided that Novartis would be approached for discussions on the issue.”
She added that if the matter remains unresolved, the group may move the Delhi High Court seeking intervention.
Novartis, when contacted, denied any supply shortage and said it had taken all necessary steps to ensure there was no disruption.
Responding to queries regarding shortages in government supply, the company said it participates in most public tenders, but these are governed by predefined conditions. For imported medicines such as Desferal, certain requirements, including shelf life and supply-linked clauses, can pose operational constraints.
The company’s response suggests possible factors affecting its participation in hospital procurement processes, as also highlighted by patient groups.
However, The Tribune’s ground enquiries indicated acute shortages across government hospitals, with patients reporting that the drug has not been available for months.
At the same time, the medicine continues to be listed on private platforms such as Tata 1mg and Apollo Pharmacy, suggesting that supply exists but is not reaching public hospitals.
Officials at LHMC said, “The injections are imported. We floated a tender for procurement three months ago but received no response. We have also attempted local purchases, but availability remains inconsistent.”
The All India Institute of Medical Sciences (AIIMS), New Delhi, said, “We do not procure this drug at AIIMS. Our patients are receiving medicines through NGOs.”
Safdarjung Hospital officials said, “At present, there are no patients requiring deferoxamine, as they are responding well to oral chelators available in the hospital.”
As hospitals and the manufacturer offer differing accounts, patients continue to face significant health risks.
Kareem (name changed), a 26-year-old patient, said, “I have been unable to procure this drug from any government facility for the past six months.”
He added that his serum ferritin levels had risen dangerously. “Doctors have told me that my ferritin level, which should ideally be between 17.9 ng/mL and 464 ng/mL, has now reached 4,960 ng/mL, putting my organs at risk.”
Rahul (name changed), a 26-year-old student undergoing iron chelation therapy, said, “The system meant to ensure drug supply is no longer functioning on the ground. I am depending on external sources for this injection.”
Patients said the drug has been unavailable at government hospitals for between three and six months.
The cost of Desferal is also prohibitive. A pack of 10 vials costs around Rs 3,000, with Rahul estimating his monthly expenditure at nearly Rs 27,000.
“This injection was supposed to be available free,” he said.
