The Desferal drug — a part of the World Health Organization’s List of Essential Medicines — is seeing a significant shortage in public hospitals, said Thalassemia Patients Advocacy Group (TPAG) on Monday, noting that it is creating a life-threatening crisis among thalassemia patients, especially those from poor backgrounds.

Thalassemia is a severe inherited blood disorder, passed from parents to children. The disorder occurs when the body doesn’t make enough of a protein called haemoglobin — an important part of red blood cells — forcing the need for blood transfusions every fortnight.

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These repeated transfusions done every 15 days to survive, increases iron levels in the body — creating a significant risk of death.

Using desferal — given intravenously — can save lives as it removes excess iron from the body in thalassemia patients.

“I could live a normal life because of desferal, but today patients are dying because desferal drugs are not available,” Anubha Taneja, a thalassemic and founder and secretary of TPAG, told IANS.

However, Novartis — the only company that manufactures the drug in the country — has denied the claim.

“This is to confirm that currently there is no shortage in supply of Desferal in India,” a Novartis spokesperson, told IANS.

According to Taneja, for more than a year now, public sector hospitals nationwide as well as Delhi have been facing an acute shortage of Desferal.

“Surprisingly, this drug is available in private chemist shops but is off the shelves for poor thalassemic patients,” Taneja said.

“Poor patients are unable to afford this drug as it is expensive almost Rs 150 per vial — and for someone who needs four vials a day, the monthly cost can go up to Rs 18,000. It is unaffordable for many patients,” she added.

While there are various iron chelators which are available for purchase, desferal remains one of the most effective, especially for patients who cannot take oral drugs. There is no substitute for that.

Moreover, “alternatives do not suit every patient so their iron levels have just been going up or someone or the other donates to them,” Taneja told IANS.

Taneja cited “capped pricing and manufacturing challenges” as the reasons for the shortage.

“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 no disruption in the availability of the medicine,” a Novartis spokesperson said.

Taneja called on the government “to intervene in the matter urgently.”

She also urged the government to “explore compulsory licensing or domestic manufacturing under Make in India”.

India is the thalassemia capital of the world. Every eighth thalassemia patient in the world lives in India. And yearly about 10,000-20,000 new thalassemia majors are born.

Thalassemia is also a disability under the RPWD Act 2016 with special provisions for priority treatment.