The Delhi High Court directed the Union Government to establish the National Fund for Rare Diseases (NFRD).
- The Court also directed to allocate a sum of Rs 974 crore to the NFRD for the financial years 2024-25, and 2025-26.
- The Court’s decision was influenced by the previous underutilization of funds.
- Only ₹119.35 crore of the ₹402.67 crore allocated for treating Rare Disease was spent between 2017 to 2022.
- The High court also directed for the establishment of the National Rare Disease Cases Committee.
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What are Rare Diseases?
- Rare diseases are conditions with a low prevalence, affecting a small population.
- According to WHO, a disease is considered rare if it affects 1 or fewer in 1,000 people.
- They include genetic diseases, rare cancers, tropical diseases, and degenerative disorders.
- Global Scenario: Over 7,000 rare diseases exist, but only 5% are treatable.
- India’s Rare Disease Burden: India accounts for a significant portion of the global rare disease cases, with estimates suggesting that between 80 to 100 million people are affected.
- About 75% of those are children, and many of these diseases are life-threatening, contributing to high child mortality rates.
Challenges Posed by Rare Diseases
- Limited Access to Care: Lack of specialist availability hinder access, resulting in care disparities.
- Diagnostic Delays: Many rare diseases are poorly understood, leading to long diagnostic odysseys, misdiagnoses, and prolonged suffering.
- Treatment Issues: Limited research yields few approved treatments; healthcare professionals may lack experience or knowledge in managing these diseases.
- Financial Burden: High costs of treatment and care can lead to financial hardship for families and strain national healthcare systems.
- Psychosocial Impact: Patients and families face stress, anxiety, and social isolation, significantly affecting mental health.
- Education and Awareness: Lack of public understanding leads to misconceptions and stigma; increased awareness is essential for support and early diagnosis.
- Research and Innovation: Small patient populations and limited funding hinder research; collaboration among stakeholders is crucial for advancing therapies and outcomes.
National Policy for Rare Diseases (NPRD), 2021
- Aim: To reduce the prevalence and incidence of rare diseases in India.
- It categorises rare diseases into three groups based on treatment needs:
- Group 1: Disorders that can be treated with a one-time curative treatment.
- Group 2: Diseases requiring long-term or lifelong treatment but with lower treatment costs.
- Group 3: Diseases that have a definitive treatment, but patient selection is difficult, and costs are high.
- Centres of Excellence (CoEs): These are identified health facilities dedicated to diagnosing, preventing, and treating rare diseases. Eight such centres have been designated.
- Financial Support:
- Up to ₹5 crore is provided to upgrade diagnostic facilities at CoEs.
- Patients suffering from rare diseases can receive up to ₹50 lakh for treatment at CoEs, separate from the Rashtriya Arogya Nidhi (RAN) scheme, which offers a maximum of ₹20 lakh.
- National Registry: A hospital-based national registry is being developed to collect data and support research into rare diseases.
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National Rare Disease Cases Committee
- It is a five-member panel to implement the rare diseases policy.
- Members: Experts from relevant fields, including medical professionals, policymakers, and representatives from healthcare institutions.
- This committee is responsible for:
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- Assessing individual cases to determine treatment needs.
- Implementing policy provisions through guidelines and strategies.
- Facilitating coordination among medical experts, policymakers, and healthcare institutions to address the challenges related to rare diseases.
- Monthly meeting, faster approval, and better Utilisation of Fund.
October 8, 2024
