HYDERABAD: For over a month now, an online petition on change.org started by Bengaluru-based Namita Kumar has been making news. Living with Thalassemia, Namita has been trying hard to draw attention to shortage of a drug called Desferal, which is critical for managing her condition.
Desferal is crucial in removing excessive iron that can cause damage to other body organs. Those in need of Desferal mostly acquire it from Thalassemia societies and people in other states have reportedly complained that societies are short on supply. The Hyderabad Thalassemia and Sickle Cell Society refused to divulge information regarding the availability of the drug. Though, there are other centres that also offer drugs and blood transfusion for people living with Thalassemia, an average of 30 patients visit the society everyday, said Dr Saroja from the Society.
Novartis is the only company that manufactures the drug in the country. Novartis representatives were unavailable for comment. Namita said that for now the issue has been resolved. “There are around 20,000 vials available right now and they are likely to procure more in the next month. This is the information I received,” she said.
New rules
An official from the Telangana State Medical Services and Infrastructure Development Corporation (TSMSIDC), the nodal agency in the state that procures medicines said that till now, hospitals and centres had been using the 20 per cent emergency funds to acquire the Desferoxamine Mesylate injections. However, the amended government order issued two months ago will bring in regulations. The drug will be procured by TSMSIDC and a tender has been issued for the same. Novartis too has applied for it.
The larger picture
Shortage of this particular drug is not the only problem of people living with Thalassemia. Malathi Dechiraju CEO and president of Maa Asara that works with children living with Thalassemia tells us that it is only one part of the larger story. “Yes, we have been struggling not only for Desferal, but also substitute drugs that can help regulate iron levels among those living with Thalassemia. This is a life long requirement and we as an organisation have been struggling to make drugs available for a long time now,” said Malathi.
Malathi, who has adopted 50 children living with Thalassemia said that the lack of awareness among people is a major hindrance. “These issues are all linked together. While those living with Thalassemia do not share their problems, there are no awareness programmes from the government’s side talking about what can be availed. There are no NGOs in place to talk about these issues either,” Malathi added.
Although the societies provide treatment at subsidised rates, it doesn’t reach the patients. “They have to come from far away places. Even if their travel expenses are taken care of, the journey is tedious and exhaustive for the patients as they are aneamic. They struggle and for something as dangerous as Thalassemia, it is important that treatment reaches people,” she pointed out.