RARE DISEASE (Syllabus: GS Paper 2 - Health)

Context: AIIMS Delhi, one of the designated centres of excellence for rare disease treatment in the country, utilised less than 1% of the allotted funds for treating patients facing such a challenge in 2022.

• The premier institute was allotted Rs 7.12 crore under a central government rare disease scheme in 2022. 
• Out of this amount, the hospital utilised Rs 1. 99 lakh, which is 0. 28% of the allocation. 
• The allocation last year was increased by around Rs 3 crore from 2021 when Rs 4. 1 crore was allotted under the same scheme. 

Rare disease

• A rare disease is defined as often debilitating lifelong disease or disorder with a prevalence of one or less per 1,000 population, according to the World Health Organization (WHO).
• The Union health ministry had formulated and launched the National Policy for Rare Diseases March 30, 2021. 
• Under this, financial assistance of Rs 20 lakh was guaranteed for rare diseases amenable to one-time treatment identified under Group 1.
• These included LSDs (metabolism errors), immune deficiency disorders and Osteopetrosis (when bones grow abnormally dense).
• Financial assistance was not available for those suffering from rare diseases under Group 2 - diseases which require lifelong treatment with a relatively lower cost - and Group 3 - diseases for which definitive treatment is available but is costly, requiring optimal patient selection.
• The policy was changed in May 2022 when the financial assistance of Rs 20 lakh was hiked up to Rs 50 lakh to include rare diseases of all categories.
• Till the finalisation of guidelines and in order to provide uninterrupted and enhanced financial assistance i.e up to Rs. 50 lakhs to the patients of rare diseases irrespective of the category of disease, funds may continue to be granted from the current budget head of Umbrella Scheme of Rashtriya Arogya Nidhi (RAN).
• Rashtriya Arogya Nidhi is a centrally sponsored scheme which aims at providing financial assistance to the patients who live under the poverty line.