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‘Disability certificate’ for Sickle cell patients

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 Missionhas 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.
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