Blood Disorders in India: Data, Scope, Spread, and Endemic Zones
Scope of the Problem
India has one of the highest burdens of inherited blood disorders in the world.
These primarily include:
- Thalassemia
- Sickle Cell Disease (SCD)
- Hemophilia
- Other rare bleeding disorders (like von Willebrand Disease)
These conditions are chronic, genetic, and often life-threatening without proper diagnosis and lifelong care.
Prevalence and Data
Thalassemia
- Carriers: Estimated 35 to 45 million people in India.
- Major cases (transfusion dependent): ~100,000+ patients.
- Annual births with Thalassemia Major: ~10,000–12,000.
- Carrier frequency: ~3%–17%, depending on region.
Sickle Cell Disease
- Estimated cases: 20 million+ carriers, and 1.5 million patients.
- Annual affected births: ~44,000 newborns with sickle cell anemia.
- Highest burden in tribal populations.
Hemophilia
• Diagnosed cases: ~20,000–25,000.
• Estimated actual cases: over 100,000, due to underdiagnosis.
• Hemophilia A is more common than B.
Geographic Spread and Endemic Zones
Thalassemia Endemic Regions
- Punjab, Haryana, Uttar Pradesh, West Bengal, Maharashtra, Gujarat
- Also common among Sindhi, Bengali, Muslim, Punjabi, and tribal populations.
- Border states have higher prevalence due to ethnic and genetic factors.
Sickle Cell Disease (SCD) Endemic Zones
- Strongly tribal-linked, especially in central and eastern India.
- Endemic in:
- Odisha (especially Kalahandi, Koraput, Kandhamal)
- Chhattisgarh (Bastar, Dantewada)
- Madhya Pradesh (Shahdol, Jabalpur)
- Maharashtra (Gondia, Chandrapur, Gadchiroli)
- Jharkhand, Gujarat, and Andhra Pradesh
Up to 20–30% of tribal populations in these areas may carry the sickle cell trait.
Hemophilia Spread
- Pan-India presence, but diagnosis mostly from urban tertiary centers.
- Undiagnosed cases are more common in rural and remote regions.
Here are two bar charts that visualize the prevalence of blood disorders across key
Indian states:
1. Sickle Cell Disorder Index – Highest in tribal-dominated states like Odisha,
Chhattisgarh, and Maharashtra.
2. Thalassemia Disorder Index – More prevalent in Gujarat, Punjab, and West
Bengal.
The prevalence indices of Sickle Cell Disease and Thalassemia across key districts in Odisha. The data highlights higher sickle cell burdens in tribal-dominated districts like Sambalpur, Nuapada, and Malkangiri.
Government Initiatives
- National Health Mission (NHM): Includes control of genetic disorders under RBSK (Rashtriya Bal Swasthya Karyakram).
- Sickle Cell Anemia Elimination Mission: Launched in 2023 with the goal to eliminate sickle cell anemia by 2047.
- Free distribution of Hydroxyurea (SCD) and Chelation drugs (Thalassemia) in some states like Odisha and Gujarat.
- Screening programs for schoolchildren and tribal areas in states like Maharashtra and Madhya Pradesh.
Challenges in Endemic Zones
- Lack of awareness leads to late diagnosis and complications.
- Low access to blood transfusion centers, especially in tribal areas.
- Cultural and language barriers reduce program effectiveness.
- High dropout rates in treatment due to travel cost and side effects.
Recommendations
- Mandatory premarital and antenatal screening in endemic zones.
- Expansion of district-level thalassemia and SCD centers.
- Inclusion of blood disorder management in Ayushman Bharat and state health insurance schemes.
- Community-based genetic counseling and awareness campaigns.
- Mobile health units for tribal regions.
Dr. Sruti Mohapatra
2021 Nari Shakti Purashkar by President of India
TEDx Speaker (5+) and Winner of 77+ awards
Founder and CEO, Swabhiman, Bhubaneswar
Vice Chair, Disabled People’s International-India, Consultative Status UN
