When five-year-old Suraj was debilitated with a persistent fever, his family took him to the district hospital in Nuapada in western Odisha. The hospital directed them to the Veer Surendra Sai Institute of Medical Sciences and Research at Burla in Sambalpur, around 250 km from their village. At the Institute, Suraj underwent a diagnostic test called haemoglobin electrophoresis to detect whether he had sickle cell disease (SCD). When the tests confirmed SCD, the Institute registered him as a patient and referred him to Nuapada district hospital for blood transfusions.
Suraj’s story came up during our work with the National Human Rights Commission in 2019. It provides a glimpse of the difficulties that people like Suraj, from marginalised tribal communities, face even to access basic healthcare and diagnostics.
It is, however, the beginning of an arduous battle with an under-resourced health system, inadequate information, and high expenditure.
