Understanding Sickle Cell Anaemia in India’s Tribal Communities

Sickle Cell Anaemia Mission in Tribal Populations in India

1. What is sickle cell disease (SCD)?

• SCD is a genetic blood disorder characterized by the production of abnormal hemoglobin (HbS), which causes red blood cells to assume a sickle shape. This leads to increased hemolysis, blockages in blood vessels, and various complications.

2. How common is sickle cell disease among tribal populations in India?

• The prevalence of the sickle gene among tribal populations ranges from 1-40%. It is notably higher in regions like Madhya Pradesh, Maharashtra, Gujarat, Odisha, and Chhattisgarh.

3. Why is SCD generally milder in tribal populations compared to non-tribal groups?

• SCD is generally milder among tribal groups due to a high prevalence of genetic modifiers such as alpha-thalassemia and elevated levels of fetal hemoglobin (HbF), which help reduce the severity of the disease.

4. What are the main complications associated with SCD in tribal populations?

• Although generally milder, SCD in tribal populations can still lead to painful crises, acute chest syndrome, infections, and other severe complications, particularly in cases with more severe genetic presentations.

5. What screening methods are used for detecting SCD in India?

• High performance liquid chromatography (HPLC) is widely used for screening, along with solubility tests which are both sensitive and cost-effective. Newborn screening programs are also being implemented in various states.

6. What is the National Sickle Cell Anaemia Elimination Mission?

• The National Sickle Cell Anaemia Elimination Mission aims to eliminate SCD as a public health problem by 2047, focusing on tribal and other high-prevalence areas. The mission includes:
  • Screening: Screening 7 crore people aged 0-40 years in affected districts.
  • Care: Providing affordable, accessible, and quality care to all SCD patients.
  • Awareness: Generating awareness through Information, Education, and Communication (IEC) and media activities.
  • Counseling: Offering pre-marital genetic counseling to reduce the transmission of SCD.
• The program was launched by Prime Minister Narendra Modi on July 1, 2023, in Shahdol, Madhya Pradesh, and is being implemented in 17 states with higher SCD prevalence.

7. What is the approach to managing SCD in tribal populations?

• Management includes genetic counseling, newborn screening, comprehensive care programs, and outreach initiatives such as mobile clinical units. Hydroxyurea therapy is used for patients with severe symptoms.

8. Are there any preventive measures or initiatives for SCD in tribal areas?

• The National Sickle Cell Anaemia Elimination Mission provides a structured approach to prevention, including mass screening, care delivery, and public awareness campaigns to minimize the impact of SCD.

9. How is prenatal diagnosis handled for SCD in tribal populations?

• Prenatal diagnosis is available and accepted among tribal families. Common techniques include chorionic villus sampling and DNA analysis, making it accessible and cost-effective for tribal communities.

10. What challenges exist in delivering care for SCD in tribal populations?

• Challenges include accessibility to healthcare, lack of awareness, and geographical barriers. Integrated care models with village-based programs and trained local healthcare workers are helping to overcome these issues.

11. Which states in India are implementing newborn screening programs for SCD?

• States like Maharashtra, Gujarat</