Context:
With over a million people affected, sickle cell disease has become a major concern for India.
About Sickle Cell Disease (SCD):
- Sickle cell disease is caused by a genetic abnormality. If both parents carry the sickle cell trait, the child has a significant chance of being born with the disease.
- 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.
- Symptoms: Bone Pain, Eye Disease or blindness, Genital and Hormonal issues, Liver and Gallbladder issues, strokes and kidney issues etc.
- Health Impact: The disease significantly shortens lifespan (to about 40 years) and causes complications including anaemia, recurrent infections, pain, and organ damage.
- Prevalence: the majority of cases are concentrated in the tribal belt across Odisha, Jharkhand, Chhattisgarh, Madhya Pradesh, and Maharashtra.
- Cure and treatment: No permanent cure is available for sickle cell disease. Ongoing research in gene therapy is promising but will be unaffordable for most of the affected population even when it becomes available.
- Hydration: Staying hydrated helps prevent sickling of red blood cells.
- Hydroxyurea: This medication helps increase the production of fetal haemoglobin, a different type of haemoglobin that can reduce sickling.
- Blood Transfusions: Used in severe cases to replace sickled red blood cells with healthy ones.
Challenges for India
- Despite all government efforts over one million people are affected by sickle cell disease, India bears the world’s second-largest burden.
- only about 18% of individuals with sickle cell disease in India receive consistent treatment.
- Major challenges include stigma, mistrust of public health systems, and difficulties in accessing care and medications.
- Many patients drop out at various stages of treatment, leading to poor health outcomes.
Government Initiatives
- Last year, Prime Minister Narendra Modi launched the National Sickle Cell Anaemia Elimination Mission. This initiative aims to eliminate sickle cell disease as a public health problem by 2047.
- The Mission strives to provide accessible care, increase awareness, and implement mass screening programs for individuals aged 0-40
- The focus is on high-prevalence areas in 278 districts across 17 states with a high prevalence of sickle cell disease.
- The Ministry of Health under the National Health Mission (NHM) in 2016 released comprehensive guidelines on the prevention and management of Sickle cell disease.
- The government is also working to ensure that essential medications, such as hydroxyurea, are readily available and included in the essential medicines list.
- State Haemoglobinopathy Mission has been established in Madhya Pradesh to tackle the challenges in screening and management of sickle cell disease.
Way Ahead
- To effectively tackle sickle cell disease, the mission must focus on reducing stigma through targeted awareness campaigns, increasing newborn screening, ensuring medication availability close to patients, and strengthening healthcare services in tribal areas.
- Additionally, ongoing research is vital to develop new treatments and improve existing care models tailored to the Indian context.