NHM stops supply of vital drugs to thalassemia patients

BENGALURU: An estimated over 17,000 thalassemia patients in Karnataka have been hit by non-availability of life-saving iron chelation drugs. The Thalassaemia and Sickle Cell Society of Bengaluru, which has been working with the state blood cell of Karnataka since 2018, pointed out that patients are having difficulty getting drugs like Desferal and Asunra, which are vital for thalassaemia patients and need to be taken every day. Thalassaemia is a common inherited blood disorder, where the body is unable to produce enough haemoglobin.

They pointed out that the National Health Mission (NHM), which provides free medicines, stopped supplying Desferal in February 2020 and Asunra since December 2020 to government hospitals. Another drug, Kelfer, is available at CV Raman Hospital. But all patients cannot take Kelfer due to severe side-effects. 

Gagandeep Singh Chandok, President, Thalassaemia and Sickle Cell Society of Bengaluru said, “Despite getting funds from the national NHM, we are being denied medications. Those dependent on Desferal and Asunra have to pay out of their pockets or are left to die if they cannot afford it. One patient would have to spend over `20,000 per month on drugs.”

In January 2020, when the Thalassaemia and Sickle Cell Society members met the State Blood Cell coordinator, they were asked to to set up a patient registry and station patients at every government hospital to ensure the drugs reach patients. “If this is what we are being asked to do then what is the role of the State Blood Cell? If they want us to do a patient registry for the state, let them give us sufficient funds and we will set up a project. Or does the State Blood Cell expect patients to go out and raise funds for registries, when the national hemoglobinopathies guidelines state that registries are the purview of state and national agencies,” added Chandok.

When the society requested that a vaccination drive be conducted, it was not carried out. They then raised funds and conducted a camp in June at Vikram Hospital. TNIE tried contacting NHM Director DR Arundhathi Chandrashekar, but she remained unavailable for comment. Dr Sangeetha, State Blood Cell coordinator, said, “On March 31, orders were sent to district health officials to purchase drugs and give it to district hospitals, depending on the number of patients. This is being followed.”