Context: The Government is planning for permanent disability certificates for Sickle-Cell Disease (SCD) patients for age 5+, now stalled for three years.

• The Union government has been publicising its campaign to “eradicate” Sickle Cell Disease (SCD) in India by 2047.

Background

• SCD was included in the list of disabilities under the Rights of Persons with Disabilities Act, 2016, patients could only avail disability certificates with one-year validity.

• Later on, the DEPwD eventually increased the validity of disability certificates for SCD patients to three years, requiring a minimum of 25% disability.

What is Disability Certificate?

• Disability certificates in India are official documents issued to individuals with disabilities to provide legal recognition of their disability status.

• These certificates are essential for accessing various government benefits, reservations, and support services aimed at improving the lives of people with disabilities.

• Disability certificates are typically issued by medical boards or committees appointed by the state or central government.

• These boards consist of medical professionals who assess and certify the extent and type of disability.

• Disability certificates are typically valid for a specified period, after which individuals may need to undergo a reassessment to determine if there have been any changes in their disability status.

• They are issued in compliance with the Rights of Persons with Disabilities Act, 2016, which provides a legal framework for safeguarding the rights and interests of people with disabilities in India.

Significance

• Disability certificates play a crucial role in accessing various government schemes and benefits, including reservation in education and employment, financial assistance, transport concessions, and assistive devices.

What is Sickle Cell Disease (SCD)?

• SCD is a chronic single gene disorder causing a debilitating systemic syndrome characterized by chronic anemia, acute painful episodes, organ infarction and chronic organ damage and by a significant reduction in life expectancy.

Symptoms

Symptoms of sickle cell disease can vary, but some common symptoms include:

• Chronic Anaemia: leading to fatigue, weakness, and paleness.

• Painful episodes (also known as sickle cell crisis): these can cause sudden and intense pain in the bones, chest, back, arms, and legs.

Treatment

• Blood Transfusions:These can help relieve anaemia and reduce the risk of pain crises.

• Hydroxyurea:This is a medication that can help reduce the frequency of painful episodes and prevent some of the long-term complications of the disease.

• It can also be treated by bone marrow or stem cell transplantation.

Government Initiatives to Tackle SCD

• Government has released technical operational guidelinesfor prevention and control of hemoglobinopathies in 2016 including sickle cell.

• Integrated centers have also been established in 22 tribal districts for treatment and diagnosis.

• The State Haemoglobinopathy Mission has been established in Madhya Pradesh to address the challenges in screening and management of the disease.

National Sickle Cell Anaemia Elimination Mission

• The National Sickle Cell Anaemia Elimination Mission was announced in the Union Budget 2023-2024.

• It will be implemented in 278 districts of 17 states in the country.