India mirrors many global trends in blood disorders but faces unique challenges related to awareness, infrastructure, and socio-cultural barriers.
Blood is a vital, living tissue composed of liquid and solid components. The liquid portion, known as plasma, consists mainly of water, salts, and proteins, making up more than half of the blood’s volume. The solid part includes red blood cells, white blood cells, and platelets—each playing a crucial role in the body’s functioning.
Blood disorders are conditions that affect one or more components of the blood, impairing its ability to perform essential functions. These disorders can be acute (short-term) or chronic (long-term), and many are inherited. Others may result from diseases, medication side effects, or nutritional deficiencies.
Major Types of Blood Disorders
- Platelet Disorders, Bleeding, and Clotting Issues: Conditions that impact blood’s ability to clot properly, leading to excessive bleeding or unwanted clot formation.
- Anemia: Occurs when the blood doesn’t carry enough oxygen to tissues and organs, often due to low red blood cell count or hemoglobin levels.
- Blood Cancers: Includes conditions like leukemia and myeloma, which affect blood cell production and immune function.
- Eosinophilic Disorders: Affect specific white blood cells (eosinophils), potentially leading to inflammation or allergic reactions.
Overview of Inherited Blood Disorders
Inherited blood disorders are genetic conditions passed from parents to children, often affecting blood cells or clotting mechanisms.
The most common inherited disorders include:
Global Scenario
Prevalence
- Thalassemia: Over 270 million carriers globally; 300,000–400,000 babies born each year with severe forms (WHO).
- Sickle Cell Disease: Most prevalent in sub-Saharan Africa, Middle East, India, and Central America.
- Hemophilia: Affects ~1 in 10,000 people globally, but nearly 75% of people with bleeding disorders remain undiagnosed.
Global Challenges
• In many low-income countries, blood disorders are underdiagnosed and poorly treated.
• Stigma and lack of awareness prevent early detection and management.
• Access to safe blood transfusions and clotting factor concentrates is limited in developing regions.
Global Efforts
- WHO and the World Federation of Hemophilia (WFH) promote treatment access and national registries.
- Countries like the UK and Italy have successful screening programs and lifelong management for thalassemia and hemophilia.
- New therapies such as gene editing (CRISPR) and bone marrow transplants are showing promise.
India’s Scenario
Prevalence
- Thalassemia: Estimated 100,000 patients with transfusion-dependent thalassemia; ~42 million carriers.
- Sickle Cell Disease: High prevalence in tribal populations in Odisha, Chhattisgarh, Maharashtra, Gujarat, and Madhya Pradesh.
- Hemophilia: Around 20,000 diagnosed cases, but experts estimate over 100,000 undiagnosed.
Key Challenges
- Low Awareness: Most people are unaware of carrier status until affected children are born.
- Stigma: Social discrimination affects marriage prospects, education, and employment.
- Access Gaps: Rural and tribal areas lack diagnostic centers and regular transfusion facilities.
- Financial Burden: Treatment is lifelong and expensive; public support is limited.
Efforts in India
- Government Programs:
- National Health Mission and Sickle Cell Mission target tribal regions.
- States like Gujarat, Odisha, and Maharashtra offer free drugs like hydroxyurea and chelation therapy.
- NGO Role:
- Thalassemics India, Cure2Children, and Hemophilia Federation India offer support, education, and advocacy.
- Screening Initiatives:
- Gujarat and Odisha have implemented mass screening programs in tribal areas.
- Prenatal diagnosis is available in urban centers but remains rare elsewhere.
Comparative Insights:
| Aspect | Global (Developed Nations) | India |
|---|---|---|
| Awareness | High among general population | Low to moderate, especially rural |
| Screening Programs | Widespread, mandatory in places | Limited to select states |
| Healthcare Access | Universal healthcare aids treatment | Fragmented, urban-focused |
| Stigma | Minimal due to awareness | Significant in rural areas |
| Advanced Therapies | Available (e.g., gene therapy) | Rare and unaffordable |
| Policy Support | Strong, consistent | Improving, but inconsistent |
Recommendations
- Universal Screening: Mandate premarital and prenatal screening, especially in high-prevalence regions.
- Health Education: Launch nationwide campaigns to debunk myths and reduce stigma.
- Strengthen Rural Infrastructure: Ensure every district hospital can screen and treat blood disorders.
- Research and Data Collection: Create national registries and support clinical research in Indian contexts.
- Subsidize Treatment: Offer financial support and insurance coverage for long-term care.
Conclusion
India mirrors many global trends in blood disorders but faces unique challenges related to awareness, infrastructure, and socio-cultural barriers. While international efforts are moving toward cures and advanced therapies, India must first focus on early diagnosis, awareness, equitable access, and social support to bridge the gap. Collaboration between government, civil society, and medical institutions is crucial to address both the medical and social aspects of these lifelong conditions.
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
