Novartis denies shortage of Thalassemia drug Desferal; says taking necessary steps to ensure adequate supply

Novartis has assured that steps are being taken to ensure the adequate supply of Desferal, a drug crucial for treating iron overload in Thalassemia patients. The drug is manufactured exclusively by the Swiss pharmaceutical giant.

This comes after widespread complaints of shortages from Thalassemia patients across India. Thalassemia, a rare genetic blood disorder, affects the body’s ability to produce sufficient haemoglobin, the oxygen-carrying protein in red blood cells. Desferal is used to remove excess iron from the body in patients requiring frequent blood transfusions.

Advocacy groups have raised concerns that while the drug remains available in private chemist shops, it is not reaching government hospitals, leaving economically disadvantaged patients without access. “Many poor patients cannot afford the drug, which costs around ₹150 per vial. For those needing four vials daily, costs can escalate to ₹18,000 per month,” a senior government hospital doctor noted.

Patients have echoed the concerns. Govind, a Thalassemia patient admitted in Lady Hardinge Medical College, said, “I need Desferal, but it’s not available in my ward. Right now, an NGO is donating the drug to me.” Gagan Singh Chandhiok, a patient from Karnataka alleged, “We have been dealing with this shortage for years.”

Novartis, however, denied any current shortage. “Currently, there is no shortage of Desferal in Delhi or elsewhere in India,” a spokesperson told Business Today. “We understand the importance of continuity in the treatment of patients living with Thalassemia and have been taking all necessary steps to ensure that there is adequate supply and there is no disruption in the availability of the medicine,” said the spokesperson.

The shortage has put patients at risk, as iron overload from repeated transfusions can lead to life-threatening conditions, patient advocacy groups have claimed. The Thalassemia Patients Advocacy Group (TPAG) has written to the Ministry of Health and Family Welfare, urging government intervention. “Desferal is life-saving. Without it, many lives are at risk, especially as Thalassemia is recognised as a disability under the Rights of Persons with Disabilities Act 2016, which provides for priority treatment,” said Anubha Taneja, founder of TPAG.

The National Policy for Rare Diseases (NPRD), 2021 requires government hospitals, designated as Centres of Excellence (CoEs), to stock essential drugs for rare diseases like Thalassemia. Under this policy, patients are eligible for financial assistance of up to ₹50 lakh, making treatment more accessible.

“Despite these provisions, the shortage persists, possibly due to capped pricing or manufacturing challenges,” claimed Taneja, who suggested that the government explore options like compulsory licencing or domestic manufacturing under the ‘Make in India’ initiative.