World Sickle Cell Disease Day 2021

The story: The 'Sickle Cell Disease' is an inherited blood disease, common among people of African, Arabian and Indian origin. The government of India

World Sickle Cell Disease Day 2021

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• The story: The 'Sickle Cell Disease' is an inherited blood disease, common among people of African, Arabian and Indian origin. The government of India runs awareness projects to help mitigate its impact.
• The news: To commemorate the World Sickle Cell Disease (SCD) Day on 19th June, the Ministry of Tribal Affairs (MOTA) flagged off mobile vans under the "Unmukt project" for strengthening screening and timely management of SCD in tribal districts of Jharkhand and Chhattisgarh.
• Details: The United Nations General Assembly (UNGA) adopted a resolution recognising SCD as a public health problem on 22th December, 2008. It also recognised SCD as one of the first genetic diseases.

1. Sickle Cell Disease is a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. People with this disease have atypical hemoglobin molecules called hemoglobin S, which can distort red blood cells into a sickle, or crescent shape. This blocks blood flow and oxygen from reaching all parts of the body.
2. Its symptoms include severe pain, referred to as sickle cell crises. Over time, people with sickle cell disorders can experience damage to organs including the liver, kidney, lungs, heart and spleen. Death can also result from complications of the disorder.
3. Treatment includes medication, blood transfusions and rarely a bone-marrow transplant.

• Statistics: India is home to nearly 1,50,000 patients with SCD and about 88% of Sickle Cell Anemia (SCA) cases in Asia. The disease in India occurs predominantly in eastern Gujarat, Maharashtra, Madhya Pradesh, Chhattisgarh, western Odisha and in pockets of the Nilgiri Hills in north Tamil Nadu and Kerala. It is prevalent among tribal communities (including children). As per MOTA, SCD is affecting more women and children and nearly 20% of tribal children with SCD die before reaching the age of two, and 30% children die before reaching adulthood.
• Challenges: The problem of social stigma reduces the effectiveness of screening programmes as people don’t want to go to health authorities. Access to care for SCD in the tribal regions of India is limited, while the disease is more prevalent there. Children with sickle cell disease often have to drop out from school. The delayed implementation of the 2018 draft policy on haemoglobinopathies slowed things. The policy aims to provide evidence-based treatment for patients and reduce the number of new-born children with sickle cell disease through initiatives such as the Sickle Cell Anaemia Control Program, screening and prenatal diagnosis.
• Initiatives by India: The Ministry of Tribal Affairs runs the SCD Support Corner, a portal to collect real time data and provide relevant information related to Sickle Cell. It will help in making a Central Repository of data. An ‘Action Research’ project under which Yoga dependent lifestyle is promoted to reduce the complications in the patient suffering from this disease. Certain states, such as Chhattisgarh and Gujarat, have expanded their screening programmes from hospital to school-based screenings. Extrapolating such screening efforts and implementation strategies to other states will help map the prevalence of the disease. The Ministry of Social Justice and empowerment has increased the validity of disability certificates for SCD patients from 1 year to 3 year.
• Summary: The SCD is a health burden which not only impacts the individual’s life cycle but also impacts the economy as well. There is a need to take efforts so that the next generation is free from the disease. There is an urgent need for multi-stakeholder engagement as well as meaningful partnerships with like-minded organizations, pharmaceutical industries, private organizations, not-for-profit organizations for working jointly to reduce morbidity and mortality from SCDs and increasing the access to care for SCD in tribal regions of India.

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