Syllabus: GS 2/Health
In News
- The government has announced financial assistance of up to ₹50 lakh for the treatment of patients with rare diseases identified under the National Policy for Rare Diseases, covering 63 categories of rare diseases.
About Rare Disease
- A rare disease is a health condition with low prevalence, affecting a small number of people compared to more common diseases in the general population.
- Rare diseases have no universally accepted definition, however, they are typically characterized by their low prevalence, severity, and often the lack of alternative treatments.
- They include genetic diseases, rare cancers, infectious tropical diseases, and degenerative diseases.
- WHO defines rare disease as often debilitating lifelong disease or disorder condition with a prevalence of 1 or less per 1000 population.
Issues and Concerns
- Prevalence: India accounts for one-third of the global rare disease incidence, with over 450 identified diseases, affecting 8-10 crore people, predominantly children.
- However, rare diseases are largely neglected in India.
- Lack of a Standard Definition: India lacks a standard definition for rare diseases. This gap persists despite efforts to address the issue.
- Diagnosis Challenges: On average, rare diseases take seven years to diagnose, with healthcare professionals often unable to interpret symptoms accurately.
- Funding Issues: The budget for rare diseases remains low.
| Initiatives – The National Policy for Rare Diseases (NPRD) was launched by the Ministry of Health & Family Welfare in March 2021. 1. 63 rare diseases are currently included under the policy, based on recommendations by the Central Technical Committee for Rare Diseases (CTCRD). 2. 12 Centres of Excellence (CoEs) identified as premier government hospitals specializing in diagnosis, prevention, and treatment of rare diseases. – Exemption from GST and Customs Duty on drugs imported for rare diseases. – The National Consortium for Research and Development on Therapeutics for Rare Diseases (NCRDTRD) was established for streamlining research activities. – The ICMR has set up an Extramural Programme Task Force on Rare Diseases and initiated 19 projects focused on developing indigenous therapies for rare diseases. |
Suggestions and Way Forward
- Time is critical for rare disease patients, and the government must address these issues with urgency to improve the lives of affected individuals.
- The government needs to define rare diseases, enhance drug development, improve Centres of Excellence (CoEs) coordination, and provide dedicated funding.
- State governments should introduce social assistance programs and satellite centres, while private companies can help through CSR initiatives.
- The government should incentivize domestic manufacturers and consider repurposing drugs, reducing clinical trial requirements.
Source: TH
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