Sickle cell anaemia (SCA) is one of the widely prevalent hematological genetic disorders, which transmits from generation to generation.

One out of every 86 newborns in the country carry this blood disorder. Tribal populations residing in the southern, central, and western States are most vulnerable to SCA. Given that 8.6 per cent of India’s population live in tribal areas, detecting SCA in this community is crucial towards building a healthy Bharat.

Sickle cell anaemia is an inherited blood disorder caused by a mutation in the gene that affects the shape of red blood cells. This genetic anomaly leads to a persistent scarcity of red blood cells, which in turn gives rise to severe health complications including infections, acute chest syndrome, and even strokes. SCA negatively impacts the average life expectancy of a patient, with the average life expectancy being 54 years.

While SCA cannot be cured fully, quality of life and life expectancy of patients can be improved by administering medicines made available in the public health system.

Bridging information gaps in the tribal community requires greater involvement from frontline workers (FLWs), such as ASHA and ANMs (Auxiliary Nurse and Midwife), to manage the disease at the community level.

Efforts to combat sickle cell anemia are underway, including bridging knowledge gaps and resources for community screening, while ensuring quality facilities for confirmatory testing at district-level hospitals.

This year’s Budget has allocated ₹15,000 crore over the next three years under PM PVTG (Particularly Vulnerable Tribal Groups) Development Mission for scheduled tribes.

Hope on the horizon

Taking cognisance of the health hazards of SCA, Piramal Foundation supported by Novartis CSR launched the Unmukt Programme in Kanker, Chhhattisgarh and Khunti, Jharkhand.

Mobile Medical Units travel to villages to screen vulnerable populations including pregnant women and relatives of those who are SCA positive. Those testing positive are referred to district hospitals.

Furthermore, extensive community mobilization and awareness sessions are conducted with frontline workers.

Greater collaboration between the government, NGOs and communities is critical to eliminating SCA. Learnings from previous interventions need to be implemented, while strengthening efforts on ground. Public healthcare staff will benefit vastly from knowledge creation, regular training to deliver prompt services and manage treatment with compassion and sensitivity.

The writer is Vice-Chairperson, Piramal Group

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