In March 2024, the Government of India issued revised guidelines under the Rights of Persons with Disabilities (RPWD) Act, 2016, to assess the extent of disability in persons suffering from Sickle Cell Disease (SCD) and related genetic blood disorders. 

About Revised Disability Guidelines for Sickle Cell Disease (SCD)

• These guidelines aim to provide a structured framework for recognition and access to welfare benefits.
• Coverage of Individuals: The revised guidelines include persons with two sickle cell genes, or those with a combination of Sickle Cell Disease and Beta Thalassaemia, or Sickle Cell Disease and Haemoglobin D (Hb D).
• Recognition under RPWD Act: This recognition allows affected individuals to claim benefits such as free school education, access to development schemes, healthcare, housing support, and reservation in agricultural land.
• Exclusion from Job Quota: Despite recognition, SCD patients have been excluded from the 4% government job reservation quota, which is available to benchmark disabilities such as vision impairment, hearing loss, locomotor disability, and intellectual disability.
• Certification Process: The certification continues to follow a biomedical and score-based system, which mainly considers measurable complications like frequency of pain crises, blood transfusion requirements, and organ damage, while ignoring social and economic impacts.

About Sickle Cell Disease (SCD)

• A hereditary blood disorder caused by a mutation that produces abnormal haemoglobin, known as Haemoglobin S.
• Impact on Red Blood Cells: The mutation distorts red blood cells into a sickle shape, reducing their oxygen-carrying capacity and causing them to block small blood vessels.
• Symptoms and Health Effects: Patients suffer from severe pain episodes, chronic fatigue, anaemia, organ damage, and often face reduced life expectancy.
• Social Dimensions in India: The disease disproportionately affects Scheduled Tribe (Adivasi) and marginalized communities, making it both a public health and social justice challenge.
• Government Initiative: The Government of India launched the National Sickle Cell Anaemia Elimination Mission (2023–2030) to strengthen screening, prevention, and treatment mechanisms.

Issues with Current Disability Framework

• Benchmark Disability Requirement: The RPWD Act, under Section 2(r), defines benchmark disability as 40% or more impairment. Many SCD patients, whose symptoms are episodic or fluctuating, fail to meet this rigid threshold despite severe disruption in their lives.
• Variation in Certification: Disability scores vary across hospitals and medical boards due to subjective judgment by doctors, leading to inconsistency and exclusion.
• Invisible and Episodic Disability: Since SCD is not always visibly disabling, the framework fails to capture chronic pain, fatigue, hospitalisation, and socio-economic disruption.
• Accessibility Barrier: Obtaining a disability certificate requires diagnostic tests and visits to district hospitals, which is particularly difficult for Adivasi and rural patients.
• Symbolic Recognition: Recognition without employment quota and broader benefits risks becoming “exclusion disguised as inclusion.”

Reforms Needed

• Extension of Job Reservations: SCD and related blood disorders must be included under the 4% government job quota, acknowledging their lifelong disabling impact.
• Reform of Certification Process: The framework should move beyond biomedical scoring to include episodic pain, school disruption, job loss, and socio-economic burdens.
• Decentralisation of Certification: Certification must be made accessible via primary health centres (PHCs), mobile medical boards, and community health camps.
• Adoption of a Rights-Based Approach: Disability should be understood as a combination of medical condition, social exclusion, and structural barriers, not merely physical impairment.
• Awareness and Stigma Reduction: Awareness campaigns and social sensitisation are needed to reduce stigma and discrimination faced by Adivasi and Dalit SCD patients.

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