Thalassemia patients at Delhi govt hospitals reel under shortage of drugs

Delhi thalassemia patients face a dire shortage of the essential injection Desferal, causing panic and desperation as alternatives fail to suffice.

Patients in Delhi’s government hospitals are spiralling into panic as the supply of a life-saving injection for thalassemia patients, deferoxamine — known under the brand name Desferal — becomes increasingly scarce.

Chandan and Bharat Juneja from Patel Nagar have been receiving treatment at Ram Manohar Lohia (RML) Hospital for years. (HT Archive)

For thalassemia patients, whose lives depend on regular doses to counter deadly iron overload caused by transfusions, the shortage has brought desperation and a grim sense of abandonment.

While the supply of Desferal has always been erratic, the past month has seen an acute crisis. Patients and families, many struggling financially, are running between hospitals and advocacy groups, begging for help.

Among them are brothers Chandan and Bharat Juneja from Patel Nagar -- both unemployed due to their medical condition -- who have been receiving treatment at Ram Manohar Lohia (RML) Hospital for years.

Chandan, 33, whose ferritin levels have soared to a dangerous 9,000 ng/ml (normal is below 1,000), says they’ve been turned away from the hospital week after week.

“Both of us have been prescribed three vials of Desferal daily, but it’s been unavailable for a month. Oral alternatives don’t work for us. Our doctor says we are in urgent need of the injections and the oral supplements are not working for us. My brother and I are barely holding on,” said Chandan, whose father runs a small shop and cannot afford the escalating costs.

Chandan now scours hospitals, thalassemia societies, and social media for leads.

For thalassemia patients, Desferal is more than a drug — it’s a lifeline. Regular blood transfusions elevate iron levels in the body to dangerous limits, risking organ failure and death.

Iron chelation injections like Desferal remove excess iron, preventing such outcomes. The drug is included in the National List of Essential Medicines (NLEM) 2022 and is supposed to be provided free of cost in government hospitals, yet shortages persist.

The option of landing supply is there, but is beyond what many can afford. The patients buy it from special Thalassemia societies at ₹175 per vial. Some societies also donate the drug to patients from weaker economic backgrounds. Depending on their prescribed dose, the monthly expenditure could vary for each patient.

Another mother, a single parent whose 26-year-old son relies on Desferal, is equally distraught.

“Never have we faced such a crisis. The government has left our children to die. My son needs three vials daily. We’re now buying them at ₹1,750 for a box of 10. He needs 90 vials a month — how can anyone afford this? It’s not just Desferal; they don’t even provide consistent blood bags or testing kits anymore,” she said, her voice breaking with frustration.

Hospitals like RML and Safdarjung insist they have oral iron chelators — Deferasirox and Deferiprone — in stock and are providing them to patients.

Safdarjung Hospital, in an official statement, said Deferasirox is superior to Desferal in removing iron from the blood and is non-inferior in mobilising iron from the heart.

“The drugs needed for treatment of thalassemia are called iron chelators. There are three effective iron chelators are available in India, one is deferoxamine injection (given subcutaneously under the skin), and two oral medications – Deferasirox and Deferiprone,” the hospital’s statement mentioned.

Safdarjung Hospital provides deferasirox free of cost to all patients that have transfusional iron overload (thalassemia, sickle cell disease, etc) and the drug is not in short supply.

Meanwhile, RML in its response stated, “Tab Deferisirox and Deferiprone are available at the store of RML Hospital.”

Yet, experts and patients argue that alternative oral medications don’t work for everyone.

“For patients who cannot tolerate other chelators, or have high iron overload have no other option but to rely on Desferal injections – oral chelators are just not as effective for them,” said JS Arora, general secretary of the National Thalassemia Welfare Society.

“Nobody wants to take painful injections two to three times daily unless absolutely necessary. Doctors themselves prescribe Desferal for its efficiency, yet hospitals push oral alternatives citing convenience. It’s hypocritical.”

“The central government has also included it in the list of essential drugs, only for the same reason and hence there is an urgent need for the government to make it available at all designated thalassemia wards,” added Arora.

The Delhi government has claimed that they have paid the vendors and the supply at all hospitals will be resumed soon. The government statement further added that at some city hospitals, injections of the drug have been restored, including 500 injections at Deen Dayal Upadhya Hospital, 150 injections at Dr Baba Saheb Ambedkar Hospital and 500 at GTB Hospital.

According to the National Thalassemia Welfare Society, more than 2,500 people live with thalassemia in Delhi. “Thalassemia patients require multiple Desferal injections on a daily basis. Restoring this in small quantities will not suffice 10 people, and hence it is only an eye wash,” a member of the society said.

But for patients like Chandan and Bharat, waiting is not an option.

“Each day without Desferal is like poison accumulating in our bodies. The government doesn’t seem to understand this urgency,” Chandan said.

Another mother’s voice echoed his despair. “I try not to think about the worst, but every night I wonder if this is the last vial we’ll manage to buy. If the government won’t save our children, who will?”