A Study Assessing Health Systems Preparedness against Sickle Cell Anemia in Nashik, Maharashtra

Prevalence rate of 4 % is present in Kokana tribe for sickle cell anemia, which is quite high and this tribe in indigenous to Nasik district constituting around 1/4th of the tribal population. The sickle cell anaemia is concentrated in tribal population in Nashik similar to general trend. ST population of 15, 64, 369 forms 25.6 % of total population and is substantially high [census, 2011]. Out of total 15 blocks in a district 9 are tribal. Since these communities are closed ones following local customs of endogamy, consanguineal marriages, endogamy, during my field visits to District Hospital (DH), Nasik, I observed there were many carriers who have got married to carriers or trait patients which will lead to further inheritance of the disease. Also, lack of provision of new-born screening leads to missing cases and late diagnosis. Thus it important to have active response from health system against SCD in Nasik. Also, since Haematology program and day care centre was launched in Nasik in 2013, the treatment program for sickle cell anaemia was integrated with thalassemia and haemophilia. The governance of Sickle Cell Disease Control Programme launched under NRHM on 17 January 2008, which was till 2015 done with a partner NGO (Gauri samajik Kalyankari Sanstha) was withdrawn from it in July 2015. Since then program has been sidelined. (Observation of available data and anecdotal learning during visit to DH). My study aims to provide evaluation of effectiveness of systems� response to SCD and give policy options for reviving the health system�s response to SCD and further improvement of existing initiatives.