Governance & Politics Current Affairs - 2020
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On January 13, 2020, the Government of India released its National Draft Policy on rare diseases. The policy has proposed one-time fund of Rs 15 lakhs to treat rare diseases under Ayushman Bharat. The policy was drafted by Ministry of Health and Family Welfare
Under the policy, certain medical institutes will be certified as Centre of Excellence for rare diseases. It includes AIIMS. New Delhi, Sanjay Gandhi Post Graduate Institute of Medical Science, Lucknow, King Edward Medical Hospital, Mumbai and four others.
There are certain diseases such as Hurler Syndrome, Gaucher’s disease, Wolman disease for which the annual treatment expenses may vary from Rs 10 lakhs to Rs 1 crore. For such diseases, a digital platform is to be set up to raise donations and corporate funding.
Key Features of the policy
- An inter-ministerial consultative committee is to be set up at national level. The committee will be led by MoHFW.
- A patient registry of rare diseases is to be constituted under ICMR (Indian Council of Medical Research).
- To create Administrative Committee that will develop guidelines to determine which rare diseases to fund.
There are 7,000 to 8,000 rare diseases. However, therapies are available only to less than 5% diseases. So far, 450 rare diseases have been recorded in India.
There is no definition for rare diseases. However, looking at global scenario (in countries like US, UK, Japan), India defines rare diseases. In India, rare diseases are those diseases affecting 6% to 8% of the population.
There is no data on number of people suffering from rare diseases in India.
The rare diseases that are included in the draft policy are Thalassemia, Haemophilia, Primary Immuno deficiency in children, sickle cell anaemia, lysosomal storage disorders such as Gaucher’s disease, Hirschsprung disease, Pompe disease, Hemangiomas, Cystic Fibrosis.
The GoI had appointed three committees to frame the policy. The policy has been framed based on the recommendations of the following committees
- V K Paul Committee
- IC Verma Sub Committee Report
- D K Tempe Committee Report
Tags: Disease • haemophilia • Health • Policy • Sickle Cell Disease
The Indian Railways has signed MoU with the RailTel, a Mini Ratna Public Sector Undertaking in order to implement Phase II of e-office programme. Also, the Indian Railways is to provide content on demand services in premium, suburban, express and mail trains.
MoU of E-Office
On January 13, 2020, the Indian Railways and RailTel signed an agreement to implement the Phase 2 of E-office project. E-Office system is an integrated file management system that will help employees manage data, content electronically. Under the new phase, around 39,000 users are to be registered in 34 Railway divisions on the National informatics Centre. The target is set to be completed by March 2020.
The Phase I of the project aimed at registering 50,000 plus users in 58 stations by March 2020. However, the Indian Railways have completed the target well ahead of time.
E-Office aims at adopting paperless culture. This will help reduce operational cost and also reduce carbon foot print.
National Informatics Centre
The National Informatics Centre was established in 1976. It operates under Ministry of Electronics and Information Technology. It provides infrastructure to deliver Government IT services and also the initiatives of Digital India.
Content on Demand Services
In order to generate more non fare revenue, Indian Railways will soon create content-on-demand in express, mail, suburban and express trains. The service is to be provided by the RailTel unit of GoI. The project is to be implemented in 2 years.
Under the project, the content such as shows, movies, educational programmes are to be made available in paid and unpaid formats for a period of 10 years. The project will be implemented in several languages. The aim is to cover all the 17 zones of the Railways.