India’s Sickle Cell Anaemia Challenge

Syllabus: GS2/ Health

Context

• India bears the world’s second largest burden of Sickle Cell Anaemia, with over a million people affected by the disease.

What is Sickle Cell Anaemia?

• Sickle cell disease is a hereditary disease caused by mutations in one of the genes that encode the hemoglobin protein.
  • If both parents carry the sickle cell trait, the child has significant chances of being born with the disease. 
• Sickle shape of cells: While healthy individuals have disc-shaped red blood cells, those with sickle cell disease have red blood cells that take on a crescent or sickle-like shape. 
• Impact: This condition leads to shortened red blood cell survival, and subsequent anemia.
  • Poor blood oxygen levels and blood vessel blockages in people with sickle-cell disease can lead to chronic acute pain syndromes, severe bacterial infections, and necrosis (tissue death).
  • Individuals affected by sickle cell disease are chronically anemic and experience significant damage to their heart, lungs, and kidneys.
• Prevalence: A majority of the patients are concentrated in the tribal belt running across Odisha, Jharkhand, Chhattisgarh, Madhya Pradesh, and Maharashtra.
• Cure: The only cure comes in the form of gene therapy and stem cell transplants. Both are expensive and still in developmental stages. 

Measures taken by government

• In 2023, India launched the National Sickle Cell Anaemia Elimination Mission to eliminate sickle cell disease as a public health problem by 2047.
• Hydroxyurea, a vital medicine for treating sickle cell disease, has been included in the essential medicines list to increase access to it.

Challenges

• Only 18% of the people affected by sickle cell disease in India are receiving consistent treatment.
  • This is because patients drop out at all stages of treatment: while getting screened for the disease, while getting diagnosed, while starting treatment, and while trying to adhere to treatment.
• At present, relatively inexpensive drugs such as hydroxyurea are effective for most patients if administered with the right dosage and frequency.
  • However, there are challenges in regular supply of medicines.
• In addition to health issues, patients also suffer from the social stigma that is attached to this disease. 

Way Ahead

• Reduce Stigma: Raise awareness through targeted media campaigns, drawing from India’s experiences with polio and HIV.
• Expand Screening: Focus on newborn screening, especially in endemic areas, for early detection.
• Improve Accessibility: Ensure medicines and adherence support are available locally, and establish interdisciplinary centers of excellence for complications.
• Increase Vaccination: Implement catch-up vaccination programs for patients to reduce infections.
• Strengthen Tribal Healthcare: Tailor healthcare delivery to tribal areas and ensure sufficient funding for these regions.

Source: TH