Two days ago, when 24-year-old Arif Munshi, a thalassaemic who sells ready-made garments in Shivajinagar, got the vital lifesaving iron chelation drugs free at the government-run C.V. Raman General Hospital, his joy knew no bounds.
Iron chelation medicines are the main lifesaving drugs for thalassaemia. These drugs are critical to prevent iron overload in vital organs due to frequent blood transfusions. “I was finding it hard to afford the expensive medicine and spent nearly ₹10,000 every month on it. Finally, the government has come to our rescue,” he said.
Another thalassaemic, Vindya M.S., who makes a living by providing home-care beauty services, was struggling to meet her medicine costs. “Whatever little I earned went on medicines and I always regretted that I was unable to support my parents financially. Now, with the government providing us these expensive drugs free, I can do that,” she said.
According to thalassaemic patient advocates, the main cause of morbidity and mortality is iron overload in the heart causing cardiac arrest or liver failure. These medicines are often financially out of reach for the poor. Providing these drugs free lifts the financial burden.
As of now, transfusion is free in all government and district hospitals and blood banks run by NGOs such as Rotary TTK and Sankalp Foundation. “If the government continues the free iron chelation programme, patients just have to spend on a few blood tests and other diagnostics. Even this is actually free in government hospitals though facilities are patchy,” said Namitha A. Kumar, a thalassaemic who is part of the Open Platform for Rare Diseases. She added that the free supply is a huge step for patients in Karnataka.
Although Karnataka started a State blood cell two years ago for treatment of patients with blood disorders (haemophilia, thalassaemia, and sickle cell anaemia), over 10,000 thalassaemia patients in the State continued to face problems. Lack of awareness, proper guidance, and non-availability of essential life-saving medicine only added to their misery.
Despite the availability of funds to all States through the National Health Mission (NHM) and National Blood Cell, there was a delay in procurement in Karnataka as there was no response from big players to tenders floated by the Health Department for procuring the drugs. Although tenders were called thrice, only local manufacturers who did not meet the tender norms applied.
Following repeated follow up by the Thalassaemia and Sickle Cell Society of Bengaluru, now the State has successfully procured the required stocks. “Standardised iron chelation drugs are now available in all district hospitals in the State and government hospitals in Bengaluru. Patients can visit the hospitals and make use of the facility,” Swatantra Banakar, State Blood Cell nodal officer, told The Hindu on Saturday.
Gagandeep Singh Chandok, president of Thalassaemia and Sickle Cell Society of Bengaluru, said several patients in the city are making use of the facility. “There are thousands of unreported patients, who may not be aware of this facility. We want all thalassaemics to know about this and make use of the facility,” he said.