World Sickle Cell Disease Day 2021

• 21 Jun 2021

Why in News

To commemorate the World Sickle Cell Disease (SCD) Day on 19^th 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.

• The United Nations General Assembly (UNGA) adopted a resolution recognising SCD as a public health problem on 22^th December, 2008.
• The UNGA also recognised SCD as one of the first genetic diseases.

Key Points

• Sickle Cell Disease:
  
  • It is an inherited blood disease which is most common among people of African, Arabian and Indian origin.
  • It 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.

• Symptoms:
  
  • It can cause 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.
• Treatment:
  
  • Medication, blood transfusions and rarely a bone-marrow transplant.
• Related Data:
  
  • India alone is home to about 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.
  • The disease 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:
  
  • Social Stigma and Prevalence among Tribal Population (where access to care for SCD is limited).
  • School Drop Out:
    
    • Children with sickle cell disease often have to drop out from school.
  • Policy Issue:
    
    • The delayed implementation of the 2018 draft policy on haemoglobinopathies.
    • 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:
  
  • Initiative by the Ministry of Tribal Affairs:
    
    • 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.
  • Expanded Screening:
    
    • 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.
  • Disability Certificate:
    
    • The Ministry of Social Justice and empowerment has increased the validity of disability certificates for SCD patients from 1 year to 3 year.

Source: PIB