Mother and Child Health – Immunization Program, BPBB, PMJSY, PMMSY, etc.

India’s Sickle Cell Challenge  

Note4Students

From UPSC perspective, the following things are important :

Prelims level: Sickle Cell Anaemia Elimination;

Mains level: Challenges related to the National Sickle Cell Anaemia Elimination Mission;

Why in the News?

The Prime Minister has reaffirmed the government’s dedication to addressing sickle cell disease, a genetic blood disorder that alters the shape of red blood cells.

About the National Sickle Cell Anaemia Elimination Mission:

  • The Union Budget 2023-24 announced a mission to eliminate sickle cell anemia by 2047. The mission focuses on awareness and screening programs for people ages 0 to 40.
  • The mission aims to reduce the burden of sickle cell disease, which primarily affects India’s tribal belt (Odisha, Jharkhand, Chhattisgarh, Madhya Pradesh, Maharashtra).
  • These include nationwide screening programs and the inclusion of vital medicines like hydroxyurea in the essential medicines list, improving access to treatment.

Challenges faced by the Indian Government:

  • High Disease Burden: India has the world’s second-largest burden of sickle cell disease, with over a million affected individuals, primarily in tribal areas.
  • Low Treatment Coverage: Only 18% of those affected receive consistent treatment, with significant drop-offs in screening, diagnosis, and treatment adherence.
  • Stigma and Misinformation: Social stigma around the disease, myths such as “God’s curse” or “black magic,” and mistrust of public health systems, particularly in tribal areas, result in delayed diagnosis and treatment.
  • Treatment Adherence Issues: Challenges include inconsistent availability of medicines like hydroxyurea, long travel distances for treatment, and stock shortages at health centers.
  • Poor Vaccination Coverage: Vaccination, which reduces infection rates and improves quality of life, remains inadequate in many affected regions.
  • Research and Development: The lack of ongoing research into treatments and understanding of the disease in India, and the unaffordability of emerging therapies like gene therapy, hinder long-term progress.
  • Financial and Operational Gaps: Health systems in tribal areas require additional funding and operational strengthening to address region-specific health challenges effectively.

What are the WHO recommendations?

  • Early Identification: Implement newborn screening programs to identify sickle cell disease at birth.
  • Integration into Health Systems: Sickle cell management should be integrated into national health services. This includes establishing specialized centers for comprehensive care and ensuring that primary healthcare providers are trained in managing sickle cell disease.
  • Public Education and Awareness: Conduct public education campaigns to raise awareness about sickle cell disease, reduce stigma, and inform communities about genetic risks and prevention strategies.
  • Genetic Counseling: Provide genetic counselling to families, especially in communities with high prevalence, to inform them about the risks of having children with sickle cell disease and the importance of carrier screening.

Mains PYQ:

Q Stem cell therapy is gaining popularity in India to treat a wide variety of medical conditions including leukaemia, Thalassemia, damaged cornea and several burns. Describe briefly what stem cell therapy is and what advantages it has over other treatments. (UPSC IAS/2017)

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