The National Policy of Rare Diseases (NPRD) has been under recent scrutiny as an Indian Member of Parliament raised concerns over the policy’s efficiency. The policy, established in 2021 by the Ministry of Health and Family Welfare for the treatment of patients with rare diseases, hasn’t significantly improved patient accessibility for several months after its initiation.
Introduction to National Policy of Rare Diseases
Formulated by the Ministry of Health and Family Welfare, the NPRD aims at enhancing attention on local research and production of medicines related to rare diseases and reducing treatment costs. Moreover, it is designed to allow early detection of these diseases, leading to timely preventative actions.
The Policy includes key provisions such as disease categorization into three groups based on their need for a one-time curative treatment, long-term or lifelong treatment, and treatments that are available but face challenges due to high costs and lifetime therapy.
Financial Assistance and Support
Patients suffering from rare diseases listed in Group 1 are eligible for financial support of up to INR 20 lakh under the Rashtriya Arogya Nidhi scheme. This scheme provides financial assistance to patients living below the poverty line and suffering from severe, life-threatening diseases enabling them to receive medical treatment at any government super specialty hospitals or institutes.
Additionally, the policy extends its benefits not only to families living below the poverty line but also to approximately 40% of the population who qualify according to the Pradhan Mantri Jan Arogya Yojana norms. The treatment under this initiative can only be availed at government tertiary hospitals.
Alternative Funding and Centres of Excellence
To supplement its efforts, the policy encourages voluntary crowdfunding treatment. It intends to establish a digital platform where individuals and corporate donors can voluntarily contribute to the treatment cost of patients suffering from rare diseases.
Additionally, the policy aims to enhance tertiary health care facilities for prevention and treatment of rare diseases by designating eight health facilities as ‘Centres of Excellence’. These centres will be offered a one-time financial support of up to INR 5 crore for upgrading their diagnostic facilities.
National Registry and Rare Diseases
A national hospital-based registry for rare diseases is to be created under the policy. This registry aims to provide comprehensive data and definitions about rare diseases for researchers and developers.
Rare diseases are low prevalence health conditions affecting a small number of people compared to other diseases prevalent in the general population. Examples include Lysosomal Storage Disorders (LSD), Pompe disease, cystic fibrosis, muscular dystrophy, spina bifida, haemophilia, and others.
Around 95% of these rare diseases do not have an approved treatment, and less than 1 in 10 patients receive disease-specific treatment. India holds approximately 50-100 million individuals with these diseases, with most of them being children and teenagers. High morbidity and mortality rates from these life-threatening conditions become a leading cause for most not reaching adulthood.
UPSC Civil Services Examination
Questions frequently appear in the UPSC Civil Services Examination about Ayushman Bharat Digital Mission. This mission aims to provide digital health IDs to all Indian citizens to access health records electronically whenever required. The health ID will be free and voluntary and will contain details of each test, disease, doctor’s appointment, medicines taken, and diagnosis. This digital mission enables better planning, budgeting, and implementation of health programs.
