Transform Rural India Helped Generate Awareness About Sickle Cell Anaemia Ahead of PM Modi’s Elimination Mission Announcement

Prime Minister Narendra Modi recently launched the National Sickle Cell Anaemia Elimination Mission aimed at saving the lives of 2.5 lakh affected families. This mission has seen collective efforts and a series of impactful activities that were conducted by Transform Rural India in collaboration with various frontline health workers, women collectives, and health officials in the heart of Madhya Pradesh. Conducted in Shahdol, Madhya Pradesh, this was a joint initiative of the Ministry of Tribal Affairs and the Ministry of Health and Family Welfare. A report by The Ministry of Health and Family Welfare (MoHFW) has listed sickle cell disease as one of the 10 problems in Indias tribal health with Madhya Pradesh having the highest prevalence. Estimated 961,492 Madhya Pradesh residents are reported to be sickle cell carriers, while 67,861 have sickle cell disease.

Sickle-cell anaemia is a congenital form of anaemia acquired during foetal development. Characterized by crescent-shaped red blood cells and an abnormal form of haemoglobin, the disorder can lead to various health complications, including episodes of severe pain, organ damage, and a shortened life expectancy. Transform Rural India (TRI), a grassroots organization that works towards devising solutions for issues faced by marginalized rural communities is taking a proactive stance to manage and mitigate the disease and improve the health of tribal populations in Madhya Pradesh.

Says Shyamal Santra, Associate Director of Public Health and Nutrition at Transform Rural India, “These activities are aimed at generating awareness of the disease within the tribal community. And to that effect, we are supporting conducting SCA screening camps and offering technical assistance to the State Haemoglobinopathy Mission and District Administrations. Health camps have successfully carried out for sickle cell anaemia screening in twenty tribal-dominated districts of Madhya Pradesh and high-performance liquid chromatography (HPLC) tests have been carried out to analyse blood samples while positive cases underwent additional evaluation.”

The data collected was analysed daily, providing valuable insights into the span of the disease in multiple districts. Says Shyamal, “Our team members also extended support to health workers and helped optimize the screening process. What made this process challenging was the lack of awareness within the tribal population. However, it was important to gain their trust and then mobilize them to address this disease that only affects their well-being but the health of future generations.”

To disseminate critically valuable information, the initiative harnessed the power of self-help groups (SHGs) and women collectives and also held weekly meetings, carried out targeted household visits, organised community-level events, and also leveraged health and nutrition services effectively to bring their benefit to communities most in need.Shyamal adds, “We worked towards breaking the mutually reinforcing drag of low demand-supply equilibrium, by building a “community-public system compact” where a community responsibility system consisting of women collectives was augmented and the public health and nutrition services delivery system was strengthened.”

To address the challenges posed by high migration rates and scattered geography in the Barwani district, TRI also focused on building a responsive system by linking the existing social infrastructure of SHGs through a digital interface. This system provided a rapid response mechanism during emergencies and facilitated robust communication and coordination among stakeholders. “The battle against sickle cell anaemia is arduous, especially for the people living in tribal districts with limited access to health infrastructure and services. However, we hope that proactive collective measures will go a long way in improving the lives of those affected by sickle cell anaemia not just in Madhya Pradesh but in different parts of the country and the learnings can be replicated around the globe,” concludes Shyamal.