Stories and words by Rupsa Chakraborty

India has a high burden of sickle cell anemia in the world. This year, the Indian government declared the national mission to eliminate Sickle Cell anaemia by 2047 but the apathetic health infrastructure and lack of implementation of existing schemes for the life-threatening blood disorder make the target questionable. Let’s take the example of Maharashtra which shares 29.8 per cent of the national disease burden, second highest.

In Nandurbar, with no proper treatment, sickle cell anaemia patients develop deformities, [and] even die.

While the Central government claims an end to sickle cell anaemia disease by 2047, this story from Nandurbar—the district with one of the highest number of affected patients in India–depicts how without proper treatment, patients develop deformities and some even succumb, of which there are no records. The PHCs and hospitals have severe dearth of life-saving medicine—Hydroxyurea, leaving patients in pain. This pushes them into alternative healers. Lack of treatment leaves the children deformed and physically challenged. The disease can be cured with bone marrow transplant but a RTI filed by The Indian Express revealed that Nandurbar doesn’t have a single bone marrow centre. Some patients often need immediate blood transfusion but most blood banks are in cities, inaccessible to far-off tribals. Nearly 70% of the district comprises tribals who are most susceptible to the genetic blood disorder. But shockingly, the state doesn’t even have data of the total number of sickle cell anaemia.

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Dr Ramesh Katre is a doctor who treats patients with sickle cell anemia in [the] Gadchiroli district infested by Maoist militant attacks in Maharashtra.

For over two decades, the doctor working in the tribal dominated district wrote more than 1,000 letters and emails to officers across 15 states in India, urging them to include information on sickle cell anaemia in school and college curriculum to raise awareness on this hereditary disorder. During this practice, he realised that often pateints with sickle cell anemia die without a diagnosis due to lack of awareness in the marginalized community. Due to this persistence, for the first time, the Indian government is in the process to include a chapter on sickle cell anemia in the syllabus of higher education. 

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