Namita Kumar, a Ph.D. student based in Bengaluru, has been living with the life-threatening disease of Thalassemia since a long time. She is required to take the drug called Desferal on a regular basis, or else she risks serious organ damage due to the excessive iron presence in her blood. But of late, she is finding it increasingly difficult to get the drug, either in the market or from one of the societies that work for the welfare of such patients. She is just one of thousands of people across the country who are facing immense hardship due to a shortage of the life-saving drug.
Thalassemia is a blood disease caused due to faulty hemoglobin synthesis. The drug taken to keep it under control, Desferal 500 mg, is manufactured by Novartis and it is the only company in India who sells it. There are allegations against Novartis that it has created an artificial shortage of the critical drug since it enjoys a monopoly. The National Platform for the Rights of the Disabled (NPRD), which has filed a petition before the government on the issue, demands more responsibility from the company. “Whether there are supply bottlenecks or someone was hoarding supplies, the company needs to take responsibility”, says NPRD Secretary Mr. Muralidharan. He has also pointed out the need for local companies to take up manufacturing the drug so that such shortages can be mitigated.
Defense from the company:
However, Novartis maintains that sufficient supplies have been arranged for now, and additional supplies will be received by the third week of September, citing non-local production of the drug as the reason. Namita Kumar, who had also petitioned against the company, says that as per the reply received from Novartis, there are around 20,000 vials available and more will be procured in September.
Possible solution and challenges:
Although Desferal is off the patent-protection system, which means anyone can make it, but it is under price-control that makes it economically unfeasible for local companies to start manufacturing it. “In such a scenario,” says Think Foundation’s Vinay Shetty, “Novartis needed to communicate with patients on the availability of stocks so that it did not trigger a panic reaction or hoarding.” At the same time, there are other issues which need to be addressed to win the battle against Thalassemia.
As per Malathi Dechiraju, CEO, and president of Maa Asara organization, awareness among Thalassemia patients is abysmally low, as there are no awareness programmes from the government like the ones for Polio and TB. The no. of NGOs and societies working in this field are also less. As a result, patients have to travel from far-off places to get treatment. Another problem is a shortage of blood for transfusions which are required for Thalassemia patients.
The Logical Indian is deeply concerned with the impasse between patients and Novartis and requests the government to intervene in the matter. It is really disturbing to know that lives of thousands of patients are at immediate risk, and a probe must take place to ascertain the reasons for the shortage so that the culprits can be punished.