03 May National policy on rare disease
(GS PAPER-3, Inclusive Growth and issues arising from it
Source- pib)
Context-
Recently the Ministry of Health and Family Welfare has announced a policy on rare disease after Multiple consultation with various stakeholders of this field.
What is rare disease-
WHO define rare disease as a lifelong Disease or disorder with the prevalence of one per thousand
Objective of the policy
- To cut down the cost of the treatment of the rare disease
- To promote research With the help of national consortium which was made under the Ministry of Health and Family Welfare
- To increase the production of lower cost medicine
- To create National hospital based registry for rare disease
- The policy also focuses on Early screening and prevention through primary and secondary Healthcare infrastructure and Wellness Centre
- Screening will also be done by Nidan Kendra which was set up under department of biotechnology
Challenges related to rare diseases
- There is a sort of medicine And available medicines have very high cost so so the people who are belonging from the lowest strata of society Are Compelled to die
- There is the lack of indigenous Research Centre related to rare diseases
- Since the penetration of Rare disease is very low therefore it has Never been and agenda for the political parties to work on it
- There is lack of awareness among the people about rare diseases
Government approach-
- Government of India is providing a sum of rupees 20 lakh under the umbrella scheme of Rashtriya Arogya Nidhi For the treatment of of rare diseases
- Policy also proposes the crowd funding mechanism to encourage Individual and private stakeholders to work for the rare diseases
-Khyati Khare
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