Prime Minister Narendra Modi launched the National Sickle Cell Anaemia Elimination Mission in 2023 to eliminate sickle cell disease as a public health issue by 2047.
Modi’s experience with sickle cell disease during his term as Chief Minister of Gujarat motivated this initiative, as it is a major public health concern in the state.
India has over a million people affected by sickle cell disease, making it the second-largest burden in the world.
Most patients are concentrated in the tribal belt across Odisha, Jharkhand, Chhattisgarh, Madhya Pradesh, and Maharashtra.
Sickle cell disease is caused by a genetic abnormality where both parents carrying the trait can result in a child being born with the disease.
Patients with sickle cell disease have crescent-shaped red blood cells, leading to a shorter lifespan (around 40 years) and numerous health complications like sickle cell anaemia, infections, and organ damage.
Patients face social stigma, being labeled as “genetically inferior,” ostracized, and sometimes seen as cursed by God or victims of black magic.
Sickle cell patients often encounter diminished marital and social prospects due to the hereditary nature of the disease.
The government's attention to sickle cell disease is high with a nationwide screening program and the inclusion of Hydroxyurea in the essential medicines list.
Despite these efforts, only 18% of affected individuals in India receive consistent treatment, with high drop-out rates during screening, diagnosis, and treatment adherence.
Stigma, misdiagnosis by traditional healers, and mistrust in public health systems contribute to diagnosis delays.
Treatment adherence is low due to inconsistent medicine supply, long travel distances for medication, and poor vaccination coverage.
Tackling the challenges will require reducing stigma and building trust in public health institutions through targeted awareness campaigns.
Way forward
Increasing newborn screening in endemic areas could help catch cases early and prevent delays in diagnosis.
Ensuring access to medicines and adherence support in nearby health centers and creating interdisciplinary centers at district levels for complications is essential.
Vaccination coverage should be improved through catch-up programs to prevent infections and improve patient quality of life.
Strengthening healthcare delivery in tribal areas by addressing unique challenges and ensuring adequate funding is crucial.
More research is needed to better understand the disease and develop new treatments in India.
Philanthropists and civil society must collaborate with the government to support research and treatment efforts.
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