National Policy for Rare Diseases 2021
Recently, the Union Minister of Health & Family Welfare has launched the National Policy for Rare Diseases 2021.
- The Government of India has formulated a National Policy for Treatment of Rare Diseases (NPTRD) in July, 2017.
- The Public Health and Hospitals is primarily a State subject and a limiting factor in its implementation was bringing States on board and lack of clarity on how much Government could support in terms of tertiary care.
- The policy had implementation challenges and gaps, including the issue of cost effectiveness of supporting which made it not feasible to implement.
- An Expert Committee was constituted by Ministry of Health and Family Welfare in November, 2018 to review the NPTRD, 2017.
Key Highlights of National Policy for Rare Diseases 2021
- The Centre of Excellence (CoE) will be provided one-time financial support of up to Rs 5 crores for upgradation of diagnostics facilities.
- A provision for financial support up to Rs. 20 lakhs under the Umbrella Scheme of Rashtriya Arogya Nidhi is proposed for treatment.
- The beneficiaries for such financial assistance would not be limited to BPL families, but the benefit will be extended to about 40% of the population, who are eligible under Pradhan Mantri Jan Arogya Yojana.
- It will cover about 40 per cent of the population who are eligible under the Pradhan Mantri Jan Arogya Yojana.
- The policy envisages creation of a national hospital based registry of rare diseases so that adequate data is available for definition of rare diseases and for research and development.
Significance of National Policy for Rare Diseases 2021
- The policy aims to lower the high cost of treatment for rare diseases with increased focus on indigenous research with the help of a National Consortium.
- The increased focus of research and development and local production of medicines will lower the cost of treatment for rare diseases.
- It focuses on early screening and prevention through primary and secondary health care infrastructure such as Health and Wellness Centres and District Early Intervention Centres (DEICs).
- It aims to strengthen tertiary health care facilities for prevention and treatment of rare diseases through designating 8 health facilities as Centre of Excellence.
- It envisages a crowd funding mechanism in which corporates and individuals will be encouraged to extend financial support through a robust IT platform for treatment of rare diseases.
- The funds so collected will be utilised by Centres of Excellence (CoEs) for treatment of all three categories of rare diseases as first charge and then the balance financial resources could also be used for research.
Need for National Policy for Rare Diseases 2021
- The field of rare diseases is very complex and heterogeneous and prevention, treatment and management of rare diseases have multiple challenges.
- The early diagnosis of rare diseases is a major challenge owing to a variety of factors that include lack of awareness among primary care physicians, lack of adequate screening and diagnostic facilities etc.
- There are fundamental challenges in the research and development for the majority of rare diseases as relatively little is known about the pathophysiology or the natural history of these diseases.
- The rare diseases are also difficult to research upon as the patients’ pool is very small and it often results in inadequate clinical experience.
- The availability and accessibility to medicines are also important to reduce morbidity and mortality associated with rare disease.
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