Critical shortage of desferal endangers thalassemia patients in Delhi govt hosps

NEW DELHI: Delhi government hospitals, among several others nationwide, are continuing to face critical shortage of Desferal, a life-saving iron chelator, placing the health and lives of thalassemia major patients in jeopardy.

Anubha Taneja, a thalassemia patient and secretary of the Thalassemia Patients Advocacy Group (TPAG) based in Delhi, has been battling more than just her condition.

Despite being covered under the National List of Essential Medicines (NLEM) 2022 and budgeted under the National Health Mission, the drug is missing from several hospitals’ supplies, including Smt. Sucheta Kriplani Hospital, Lady Hardinge Medical College, and Deen Dayal Upadhyay Hospital (DDU) for the past few years —a shortage that could prove life-threatening for patients like her.

Additionally, hospitals are also dealing with staffing problems, limited blood supplies, and testing kit shortages.

“It is very unfortunate that while this drug is available for purchase, the same is not available through government supply,” said Anubha.

“The drug is very expensive—Rs 180 per vial—and for someone who needs four vials a day, the monthly cost can go up to Rs 21,000. It’s unaffordable for many patients,” she added.

Even though various iron chelators are available for purchase, Desferal remains one of the most effective, especially for patients unable to tolerate oral drugs.

This unavailability forces patients, who require regular blood transfusions to survive, into a precarious situation, as iron overload due to repeated transfusions is the leading cause of mortality in thalassemia major.

Anubha and TPAG have been writing to the Ministry of Health and Family Welfare for over a year, requesting intervention, but they have yet to receive a response.

“Considering thalassemia is a disability under the RPWD Act 2016 with special provisions for priority treatment, I urge the government to intervene,” Anubha said. “Desferal is a life-saving drug, and without it, many patients’ lives are at risk.”

TPAG suggests that manufacturing challenges, including capped pricing and reduced demand, might be the reasons behind the lack of availability.

“The government can explore compulsory licensing or domestic manufacturing under Make in India to address this shortage,” it proposed.