National Policy For Rare Diseases: Classification, Objectives & UPSC Notes

National Policy for Rare Diseases (NPRD) 2021 aims to provide financial support for the treatment of rare diseases. Several rare diseases across India, including numerous children and other patients, are facing a death battle due to pauses in enforcing the National Policy for Rare Diseases (NPRD) 2021, patient advocacy bodies said lately. The Rajya Sabha Member of Parliament presented problems over the National Policy for Rare Diseases as it has not detected any patients with rare diseases even after several months since it was announced.

The National Policy for Rare Diseases is a topic relevant to the UPSC context under General Studies Paper II (Government Policies & Interventions, Health, Government Schemes, Current Affairs & Events.) for UPSC mains and Paper I for UPSC prelims. It is a basic topic for aspirants to understand the dynamic aspect of the National Policy for Rare Diseases. The National Policy for Rare Diseases is an essential topic for UPSC Civil Services because it highlights the role of government in ensuring equitable healthcare access, financial support, and research for patients with rare medical conditions, which is frequently discussed in the exam. Join UPSC Coaching today to boost your preparation.

Government Schemes & Policies Current Affairs 2025 - Download Free PDF

The Ministry of Health and Family Welfare, Government of India, formulated a National Policy for Treatment of Rare Diseases (NPTRD) in July 2017. Implementation of the policy, however, faced particular challenges. A limiting factor in its implementation was bringing states on board, and there was a lack of clarity on how much the government could support tertiary care. Public Health and Hospitals is primarily a State subject. Stakeholder consultation with the state governments at the draft stage of policy formulation could not be done elaborately. When the policy was shared with State Governments, issues such as the cost-effectiveness of interventions for rare diseases vis-a-vis other health priorities, the sharing of expenditure between Central and State Governments, and flexibility for State Governments to accept the policy or change it according to their situation, were raised by some of the State Governments. 

What is the National Policy For Rare Diseases (NPRD)?

National Policy for Rare Diseases, 2021, desires to deliver lower incidence and most rare diseases based on a complete and integrated preventive approach. Monetary help of Rs. Fifty lakhs per patient are provided for treatment at reported Centers of Excellence (CoEs) for Rare Diseases. A Rajya Sabha Member of Parliament (MP) raised concerns over the National Policy of Rare Diseases as it has not reached any patients with rare diseases even after several months since its introduction. The Ministry of Health and Family Welfare formulated and launched the National Policy for Rare Diseases in 2021 to treat rare disease patients. 

Purpose

• To improve priority on indigenous study and regional production of medicines.
• To reduce the cost of medicine for rare diseases.
• Screening and noticing rare diseases before earlier phases will, in favor, help in their deterrence.

Download the Daily Current Affairs for UPSC here!

Classification of NPRD

Get Free Materials for UPSC Preparation by Testbook!

Economic Contribution

The Ministry of Health and Family Welfare has obtained exemption from the Department of Expenditure on Goods & Services Tax (GST) and Basic Customs Duty on drugs imported for Rare Diseases for individual use and through CoE. As envisaged in the policy, the Department of Health Research has established the National Consortium for Research and Development on Therapeutics for Rare Diseases (NCRDTRD) to streamline the research activities for rare diseases. It has provisions for promoting research and development for diagnosis and treatment of rare diseases, promoting local development and manufacture of drugs, and creating a conducive environment for indigenous manufacturing of medicines for rare diseases at affordable prices.

• Those suffering from rare diseases recorded under Group 1 will have economic help under the Rs. 20 lakh umbrella scheme of Rashtriya Arogya Nidhi.
• This plan is for patients who are from the BPL category and suffering from life-to-death diseases.
• All the beneficiaries can benefit from treatment and other medical help at super-speciality medical institutes, including government hospitals.
• This scheme will financially endorse 40% of the people qualified for Pradhan Mantri Jan Arogya Yojana models.
• Unlike BPL households, these beneficiaries will obtain remedies only from Government tertiary hospitals.
• This policy also conveys 8 health facilities called Centres of Excellence.
• The Indian Government will help it with one-time assistance of up to ₹ 5 crores to boost diagnostics facilities.

Study the National Green Tribunal here.

Read the article on the National Digital Education Architecture NDEAR!

Funding Resources

The National Policy for Rare Diseases in India provides financial assistance for treatment at designated Centers of Excellence (CoEs), with a maximum grant of ₹50 lakhs per patient. The policy also encourages alternative funding mechanisms, including a digital platform for voluntary contributions from individuals and corporations to supplement government funding. This platform, accessible through the Ministry of Health and Family Welfare, uses private sector resources for rare disease treatment. The Indian Government has built a digital forum for corporate supporters and people to donate voluntarily. This crowdfunding will help with the treatment fees of patients with rare diseases.

• Government Funding: The NPRD allocates financial assistance to patients with rare diseases, especially for treatment at designated CoEs. The grant amount can be up to ₹50 lakhs per patient. 
• Alternate Funding Mechanisms: The policy recognizes the need to explore alternative funding. The alternative funding sources support rare disease treatment. 
• Digital Platform funding: A digital platform has been established to facilitate voluntary contributions from individuals and corporations. This platform allows donors to contribute to the treatment costs of rare disease patients. 
• Focus on Group 3 Rare Diseases: The policy aims explicitly to utilize these alternate funds for patients suffering from rare diseases under Group 3, which are characterized by high costs and lifelong therapy. 
• Leveraging Private Sector Resources: By enabling voluntary contributions, the policy aims to leverage the resources of the private sector and the public at large to supplement government funding for rare disease treatment. 
• Accessibility of the Digital Portal: The digital platform for voluntary contributions is accessible through the Ministry of Health and Family Welfare website. 

Learn about the Convention on Biological Diversity for UPSC here!

Concerns and Objectives of National Policy for Rare Diseases

Primary concerns of National Policy for Rare Diseases are high treatment costs, lack of awareness, and limited diagnostic facilities obstruct the care for rare disease patients in India. Despite these concerns National Policy for Rare Diseases promote early diagnosis, provide financial support, and inspire researchers and indigenous treatment growth.

Read the article on national policy education!

Significance Of National Policy for Rare Diseases

The scheme National Policy for Rare Diseases displays the treatment and prevention of rare disorders by selecting eight health facilities. Centers of Excellence will also deliver one-time economic help of up to Rs. 5 crores for advancing diagnostics facilities. The Ministry of Health and Family Welfare formulated a national policy to treat rare diseases in 2017. Still, it withdrew it in 2018 owing to "implementation challenges" and confusion regarding disease coverage, patient eligibility, etc. The budget for rare diseases remains low at ₹93 crore for 2023-2024. Under the National Policy for Rare Diseases (NPRD) guidelines 2021, up to ₹50 lakh is allowed per patient, which will be disbursed to the concerned CoE. As chronic rare diseases usually require lifelong management and therapy, this amount is woefully inadequate. The NPRD has urged the CoEs to crowdfund to treat rare disease patients.

National Registry - National Policy for Rare Diseases

A nationwide hospital-based registry of rare diseases will be made to secure adequate data and complete reports of such diseases, which are available for those interested in analysis and growth. The Government launched the National Policy for Rare Diseases (NPRD) in March 2021, and further steps taken to implement the policy are as follows: Increased financial support for Rare Disease patients from up to Rs. 20 lakhs to up to Rs. 50 lakhs per patient in 2022. NCARDRS records people with congenital anomalies and rare diseases across England. This registration service provides a resource for clinicians to support high-quality clinical practice. Supports and empowers patients and their carers by providing information about their disease or disorder.

Visit the linked article on Intergovernmental Panel on Climate Change (IPCC) Report.

Download National Policy for Rare Disease Key Takeaways PDF 

After reading this article, we hope all your doubts about the National Policy for Rare Diseases have been addressed. The textbook provides comprehensive notes on civil services and various other competitive examinations. It has always ensured the quality of its products, such as content pages, live tests, GK and current affairs, mocks, and so on. Ace your UPSC preparation with the Testbook. Download the Testbook App now!