Yousra Iram, 27, a Bengaluru-based audit and research officer living with thalassaemia, is worried as she is unable to get her life-saving iron chelation injection Desferal 500 mg from her usual suppliers.
Desferal is widely used to remove excess iron from the body that accumulates as a result of frequent blood transfusion. If not taken regularly, the excess iron will damage vital organs.
Although Ms. Iram was taking the drug thrice a week earlier, her doctor has now advised her to take it daily as there is excess build up of iron in her body. “But we have not been able to get this injection for the last 18 days and are desperately contacting all suppliers, who say there is no stock,” said her father Syed Shameel Ahmed, a retired telecom employee.
Desperate search
Several thalassaemia patients, who are dependent on this life-saving iron chelation injection manufactured by Novartis, are desperately running from pillar to post to get a few vials from other friends and patients.
“We have been contacting the Delhi and Mumbai thalassaemia societies and NGOs in other States for help. But the situation is the same across the country for the last three weeks. We are even ready to buy the stock at MRP from some organisations that would have bought the drug in bulk but there is no response,” said Gagandeep Singh Chandok, president, Thalassaemia and Sickle Cell Society of Bengaluru.
“This is a vital drug for thalassaemia patients who need daily injections to prevent iron overload from blood transfusions. The non-availability of this drug is a disaster for patients who are dependent on it. Morbidities and even fatalities can occur if the drug supply is not restored,” said Mr. Chandok, who is also dependent on the drug and needs 16 vials a week.
Namitha A. Kumar, thalassaemia patient advocate from Open Platform for Orphan Diseases (OPFORD), said Desferal is a lifeline for nearly 1,500 of the 5,000 thalassaemia patients in Karnataka for whom no other iron chelation drugs work. “If Desferal is not back in stock soon we will start seeing a steep rise in comorbidities and even cardiac fatalities,” she said.
“There is no information from the company on what the real issue is and when supplies will be restored. The same situation had occurred in 2016 when the company faced production issues after shifting their production unit to Brazil and supply was disrupted for over six months,” she said.
Supply chain issue
When contacted by The Hindu, a spokesperson for Novartis said that there have been interruptions in a few States. “Desferal injections are available in India to meet the needs of our patients. However, we have identified certain interruptions in supply in a few areas in India. We recognise the importance of this medication and are making every effort to ensure supply in the affected areas. At Novartis, we are committed to improving and extending people’s lives and are leaving no stones unturned to do so.”
