ICMR Launches First Stigma Scale for Sickle Cell Disease

• 27 May 2025

Source: TH 

Why in News? 

The Indian Council of Medical Research (ICMR) has developed the ICMR-SCD Stigma Scale for India (ISSSI), the country's first tool to measure and address stigma faced by sickle cell disease (SCD)  patients and their caregivers. The scale includes two components: ISSSI-Pt for patients and ISSSI-Cg for caregivers. 

What are the Key Features of ICMR-SCD Stigma Scale for India? 

• Multi-Dimensional Tool: Assesses stigma in 5 areas- familial/reproductive stigma, disclosure issues, illness burden, discrimination, and healthcare stigma. 
• Culturally Grounded: Developed in 6 SCD-endemic districts to reflect India's tribal, regional, and linguistic diversity. 
  • Existing 3 SCD stigma scales from Africa and America were unsuitable for India due to phenotypic, socio-cultural, and contextual differences, necessitating a locally relevant tool. 
• Validated & Reliable: Psychometrically robust, suitable for clinical use, research, and policy evaluation. 

What is Sickle Cell Disease? 

• About: 
  • Sickle Cell Disease (SCD) is a hereditary blood disorder caused by a genetic mutation in the haemoglobin gene, leading to abnormal, crescent- or sickle-shaped red blood cells (RBC) instead of the usual round shape.  
    • These sickle-shaped RBCs are less flexible and do not move easily through small blood vessels, potentially leading to blockages. 
    • This impairs blood circulation and leads to anaemia, organ damage, severe pain, and reduced lifespan.  

 

• Causes : 
  • Sickle cell disease is a genetic disorder caused by inheriting two mutated β-globin genes, one from each parent, resulting in the production of abnormal sickle haemoglobin. 
• Treatment: 
  • Gene Therapy:  SCD can be treated by bone marrow or stem cell transplantation by methods like CRISPR. 
  • Blood Transfusions: These can help relieve anemia and reduce the risk of pain crises. 
  • Medications for SCD include Voxelotor (prevents sickling and anemia), Crizanlizumab (reduces vessel blockage and pain crises), Hydroxyurea (lowers complications), and L-glutamine (reduces pain episodes), along with nonsteroidal anti-inflammatory drugs (NSAIDs) and opiates for pain relief. 
• Prevalence: 
  • SCD is a major public health concern in India, with the world's second-largest SCD burden, with over 1 million affected individuals, and ranks 3rd globally in SCD births after Nigeria and the Democratic Republic of the Congo.  
  • Carrier rates among tribal groups range from 1% to 40%, with most patients concentrated in the tribal belt across Odisha, Jharkhand, Chhattisgarh, Madhya Pradesh, and Maharashtra. 
• Government Initiatives: 
  • National Sickle Cell Anaemia Elimination Mission: Under this, CSIR is developing gene-editing therapies for SCD. 
  • National Health Mission (NHM) 2013: Special focus on SCD. 
  • The National Guidelines for Stem Cell Research 2017: It restricts the commercialisation of stem cell therapies to clinical trials, except for Bone marrow transplantation (BMT) for SCD. 
  • Rights of Persons with Disabilities (RPwDs) Act, 2016: SCD is included in the 21 disabilities that provide for benefits of reservation. 

UPSC Civil Services Examination Previous Year Question (PYQ) 

Prelims: 

Q. Consider the following statements in the context interventions being undertaken under Anemia Mukt Bharat Strategy : (2023)

1. It provides prophylactic calcium supplementation for pre-school children, adolescents and pregnant women. 
2. It runs a campaign for delayed cord clamping at the time of child-birth. 
3. It provides for periodic deworming to children and adolescents. 
4. It addresses non-nutritional causes of anaemia in endemic pockets with special focus on malaria, hemoglobinopathies and fluorosis.