The National Sickle Cell Anaemia Elimination Mission launched by the Union government in July 2023 focuses on “Eliminating sickle cell disease as a public health problem in India before 2047 “ as well as addressing the significant health challenges posed by sickle cell disease. 1
Sickle cell disease (SCD) is an inherited blood disorder, that results in modest anaemia, often referred to as sickle cell anaemia. This condition alters the shape of red blood cells, causing them to become rigid and sticky, potentially leading to either slowing or blocking of blood flow that affects organs and causes acute painful episodes. The disease is associated with a significant risk of early childhood mortality, primarily due to infections like pneumonia. Survivors may face chronic organ damage, resulting in a notable reduction in life expectancy.
SCD is a chronic single-gene disorder requiring the inheritance of two SCD gene copies, one from each parent, for manifestation. Individuals with only one copy, known as carriers or having the sickle cell trait, exhibit no disease symptoms. The carrier frequency of the SCD gene varies widely, ranging from 1% to 35%. By the Global Burden of disease estimates , an estimated 82,500 births with SCD occur annually in India 2, and the prevalence is estimated at 1.28 million cases, making it a significant public health concern. Additionally, β-Thalassemia, another inherited blood disorder, is also prevalent in India, with carriers averaging a frequency of 3-4%.
Implemented in 17 high-focus states across the country, this Sickle Cell Anaemia Program (SCAP) aims to improve the care and prospects of all sickle cell disease patients while reducing the prevalence of the disease. The 17 states are- Gujarat, Maharashtra, Rajasthan, Madhya Pradesh, Jharkhand, Chhattisgarh, West Bengal, Odisha, Tamil Nadu, Telangana, Andhra Pradesh, Karnataka, Assam, Uttar Pradesh, Kerala, Bihar, and Uttarakhand.
The program is to be executed in mission mode as the National Sickle Cell Anaemia Elimination Mission. The Mission goal is to eliminate sickle cell genetic transmission by the year 2047, showing a long-term commitment to eradicating the disease. The main strategies outlined the Operational Guidelines issued by the Ministry of Health and Family Welfare3 are:
- Primary prevention strategies: involve creating awareness, providing pre-marital and pre-conceptional counselling, genetic counselling and testing interventions in high prevalence districts, and health promotion activities with widespread community involvement.
- Secondary prevention and Screening: approximately 7.0 crore people under 40 years of age in the next 3 years to identify those with sickle cell carrier state and those with disease.
- Sickle cell genetic status cards: Issued to all those screened. They would be encouraged to match this card before deciding on marriage to reduce incidence in next generation.
- Holistic management and continuum of care: for those affected through primary to tertiary care support, advanced diagnostics, and treatment, Ayushman Bharat enrolment giving them free access to services, The integration with AYUSH, patient support, and rehabilitation.
- Prioritize tribal communities in India: the mission prioritizes its intervention in the high prevalence and tribal states.