For over a year, public sector hospitals across the country, including Delhi, have been facing an acute shortage of Desferal, a life-saving iron chelator (used to remove excess iron from the body).

This deficiency is endangering the lives of many thalassemia major patients. Surprisingly, this medicine is available at private medicine shops, but is out of reach of poor thalassemia patients, who cannot afford its high price.

Although various iron chelators are available for purchase, Desferal is one of the most effective, especially for patients who cannot take oral medications because there is no alternative.

The shortage of Desferal is forcing patients who require regular blood transfusions to live in life-threatening conditions, as repeated blood transfusions lead to iron overload. Iron overload is a major cause of death in thalassemia major patients.

Some patients have ferritin levels as high as 8000 ng/mL, while the normal range is below 1000 ng/mL. In such cases, patients are at risk of heart failure and other complications. Many thalassemia patients have complained about the unavailability of the medicine. “I need desferral, but it is not available in my ward at LHMC.

Govind, a major thalassemia patient, said, Thalassemia India is currently donating Desferal to me. “We are facing the same desferal shortage in Karnataka, and it has been going on for years,” said Gagan Singh Chandiok, a thalassemia patient and member of TPAG.

One reason for the non-availability of the drug in government hospitals may be that many patients have switched to other iron chelators. The manufacturer, Novartis, may no longer find production of Desferal economically viable due to the price cap imposed under NLEM 2022.

It may also be difficult for the manufacturer to meet government procurement conditions such as assured supply due to limited production quantities. Despite being out of patent term, no domestic manufacturer is willing to produce Desferal due to low margins and volumes.

“Poor patients cannot afford this medicine as it costs around Rs 150 per vial, and for someone who requires four vials a day, the monthly cost can reach Rs 18,000. This is unattainable for many patients,” said a source.

Anubha Taneja, a thalassemia patient and founder and secretary of the Thalassemia Patients Advocacy Group (TPAG), has been advocating for access and affordability of this essential medicine. She has met and written to the Ministry of Health and Family Welfare for over a year, but claims her pleas fell on deaf ears and received no response.

“Lives are at stake here,” he said. “Desferal is a life-saving medicine, and in its absence, many patients are at risk. I urge the government to intervene immediately. Thalassemia has been declared a crime under the RPWD Act 2016. Recognized as a disability, there are special provisions for priority treatment. This limitation may be limited by pricing and manufacturing challenges, but the government may also consider compulsory licensing or licensing under the ‘Make in India’ initiative. Domestic manufacturing should be explored,” he suggested.

In a statement to India Today, Novartis responded, “This is to confirm that there is currently no shortage in the supply of Desferal in India. We understand the importance of continuity in the treatment of patients suffering from thalassemia and all Necessary steps are being taken.” “To ensure that there is adequate supply and there is no disruption in the availability of the medicine.”

Recently, MITEM PHARMA, a pharmaceutical laboratory based in France dedicated to Medicines of Major Therapeutic Interest (MITM), announced the worldwide acquisition of Desferal from Novartis.

Desferal (deferoxamine), an injectable medication used to treat iron overload after blood transfusion, is necessary to treat beta-thalassemia and sickle-cell anemia. Deferoxamine is included in the WHO List of Essential Medicines.

India has the highest number of children with thalassemia major in the world – about 1 to 1.5 lakh, of which about 42 million are carriers of the beta-thalassemia trait. Every year approximately 10,000-15,000 children are born with Thalassemia major.

A recent study published in the National Library of Medicine titled “Prevalence and Management of β-Thalassemia in India” revealed that the burden of thalassemia is higher in northern and western Indian states.

In eastern India, the tribal population had a higher prevalence of Ÿ-thal trait (0.00-30.50%), Ÿ-TM (0.36-13.20%), and other hemoglobinopathies (0.04-15.45%) than the non-tribal population.

Additionally, Scheduled Castes, Scheduled Tribes and other backward classes with lower socioeconomic status and literacy rates were disproportionately affected. Although cases of β-thal were reported in almost all Indian states, the condition was mostly concentrated in the eastern and western parts of the country.