Health and Family Welfare
National Policy for Rare Diseases, 2021

Relevance in - Prelims (about National Policy for Rare Diseases 2021) + Mains ( GS II Mains ( GS II Issues relating to development and management of Social Sector/Services relating to Health , Education, Human Resources
What's the NEWS

• Union Health & Family Welfare Minister approved the "National Policy for Rare Diseases 2021" on 30^th March 2021.

National Policy for Rare Diseases 2021 Highlights

• Rare diseases are also difficult to research upon as the patients pool is very small and it often results in inadequate clinical experience.
• To address all these challenges, a very comprehensive National Policy for Rare Diseases 2021 has been finalized by the Ministry of H&FW after multiple consultations with different stakeholders and experts in the area.
• The Rare Diseases 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 to be set up with Department of Health Research, Ministry of Health & Family Welfare as convenor.
• Increased focus of research and development and local production of medicines will lower the cost of treatment for rare diseases.
• The policy also envisage 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 related to rare diseases within the country.
• The Policy also 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) and through counselling for the high-risk parents.
• Screening will also be supported by Nidan Kendras set up by Department of Biotechnology.
• Policy also aims to strengthen tertiary health care facilities for prevention and treatment of rare diseases through designating 8 health facilities as Centre of Excellence and these CoEs will also 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 Rastriya Arogya Nidhi is proposed for treatment, of those rare diseases that require a one-time treatment (diseases listed under Group 1 in the rare disease policy).
• 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.
• Besides, the Policy also 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.
• Funds so collected will be utilized by Centres of Excellence for treatment of all three categories of rare diseases as first charge and then the balance financial resources could also be used for research.
• The policy has categorised rare diseases in three groups - disorders amenable to one-time curative treatment; those requiring long term or lifelong treatment; and diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit.
• The new policy offers no support to the patients, awaiting treatment for a long time since the earlier National Policy for Treatment of Rare Diseases 2017 was kept in abeyance.

Rare diseases

• The field of rare diseases is very complex and heterogeneous and prevention, treatment and management of rare diseases has multiple challenges.
• 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 also 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 particularly in the Indian context.
• There are 7000-8000 rare diseases, but less than 5% have treatment therapies.
• About 95% rare diseases have no approved treatment and less than 1 in 10 receiving disease specific treatment.
• Where drugs are available, they are prohibitively expensive, placing immense strain on resources.

Prelims Factoids
World Cities Cultural Forum
Relevance IN - Prelims ( about World Cities Cultural Forum)
What's the NEWS

• Chief Minister Arvind Kejriwal will represent the Capital and India at the World Cities Cultural Forum
• He had accepted an invitation by the Mayor of London to represent Delhi at the forum, which comprises 40 world cities including London, Tokyo and New York.
• All the cities ‘recognise the impact and importance of culture and creativity and seek to inculcate these values in public policy and city planning

Know! more about the annual Summit

• The annual Summit, attended by Deputy Mayors for Culture and Heads of Culture from the member cities, is at the heart of the forum's activity
• Delhi will also be part of the World Cities Culture Report, the most comprehensive global dataset on culture in cities.
• This year's theme - The Future of Culture - will play a crucial role in reimagining the culture of Delhi, especially in the wake of several devastating challenges and COVID crisis faced by the people in the last one year

Know! about World Cities Culture Forum

• The World Cities Culture Forum is a network of local governments and cultural sector leaders from 40 world cities.
• The World Cities Culture Forum was established in London in 2012 with eight cities (London, New York City, Tokyo, Shanghai, Paris, Istanbul, Sydney and Johannesburg) convened by the Mayor of London.
• The World Cities Culture Forum has 40 participating member cities across six geographic regions.
• The World Cities Culture Forum is convened by Justine Simons, Deputy Mayor for Culture and Creative Industries, Greater London Authority, at the request of the Mayor of London.
• The activities of the World Cities Culture Forum are organised and delivered by BOP Consulting, a specialist consulting firm, on behalf of the Greater London Authority and the members of the Forum.
• Each year, members of the World Cities Culture Forum meet at the three-day World Cities Culture Summit. The Summit is an opportunity for members to share best practice.
• Two delegates from each member city - deputy mayors, senior policymakers or advisors in culture - are invited to attend.

World Cities Culture Report

• The World Cities Culture Report is the network's flagship publication.
• It is a compendium of data and innovative policies in cities, providing an analysis of comparative data and identifying emerging issues.
• It is published on a triennial basis.
• The first version of this report was launched in London during the 2012 Summer Olympics.
• The latest edition of the World Cities Culture Report was published in November 2018.

Government Schemes
First farm-based solar power plant comes up in Rajasthan
Relevance IN - Prelims ( about first farm-based solar power plant under (KUSUM) scheme + Mains ( GS II government policies and interventions)
What's the NEWS

• The first farm-based solar power plant under the Prime Minister's Kisan Urja Suraksha Evum Utthan Mahabhiyan (KUSUM) scheme has come up in Jaipur district's Kotputli tehsil with a provision for production of 17 lakh units of electricity every year.
• The 1 MW project has been established on 3.50 acres of farmland in Kotputli's Bhaloji village.
• The new plant is also the first of the 623 farm-based solar power projects selected by the Rajasthan Renewable Energy Corporation Limited (RRECL) for generating 722 MW capacity in the State under the scheme's first phase.
• The project has been commissioned following a 25-year contract signed between the RRECL and farmland owner Devkaran Yadav in September 2020.
• The KUSUM scheme would ensure energy security for farmers, as they could generate revenue from their less productive or barren land.
• It would also help increase the clean green energy and generate employment in the rural areas

Pradhan Mantri Kisan Urja Suraksha evem Utthan Mahabhiyan (PM KUSUM) Scheme

• Ministry of New and Renewable Energy (MNRE) has launched the Pradhan Mantri Kisan Urja Suraksha evem Utthan Mahabhiyan (PM KUSUM) Scheme for farmers for installation of solar pumps and grid connected solar and other renewable power plants in the country.
• The scheme aims to add solar and other renewable capacity of 25,750 MW by 2022 with total central financial support of Rs. 34,422 Crore including service charges to the implementing agencies.

The Scheme consists of three components:

• Component A: 10,000 MW of Decentralized Ground Mounted Grid Connected Renewable Power Plants of individual plant size up to 2 MW.
• Component B: Installation of 17.50 lakh standalone Solar Powered Agriculture Pumps of individual pump capacity up to 7.5 HP.
• Component C: Solarisation of 10 Lakh Grid-connected Agriculture Pumps of individual pump capacity up to 7.5 HP.

Scheme implementation

• State Nodal Agencies (SNAs) of MNRE will coordinate with States/UTs, Discoms and farmers for implementation of the scheme.
• Components A and C of the Scheme will be implemented in Pilot mode till 31st December 2019.
• The Component B, which is a ongoing sub-programme, will be implemented in entirety without going through pilot mode. On successful implementation of pilot run of Components A and C of the Scheme, these components would be scaled-up, after getting necessary approval.

Social Issues
Central Adoption Resource Authority (CARA)
Relevance IN - Prelims ( about Central Adoption Resource Authority (CARA) + Mains ( GS II Social Issues)
What's the NEWS

• The Delhi High Court has issued notice to the Central Adoption Resource Authority (CARA) on a plea by a Hindu couple, living in the U.S., seeking a no-objection certificate (NOC) to adopt a child born to Christian parents.
• The present petition raises an issue of enormous importance as it relates to a legal vacuum in respect of adoptions carried out prior to the coming into force of the Juvenile Justice [Care and Protection of children] Model Rules, 2016... in respect of a child born to Christian parents, as in the present case

Central Adoption Resource Authority (CARA)

• It is an autonomous and statutory body of Ministry of Women and Child Development in the Government of India.
• It was set up in 1990.
• It functions as the nodal body for the adoption of Indian children and is mandated to monitor and regulate in-country and inter-country adoptions.
• CARA is designated as the Central Authority to deal with inter-country adoptions in accordance with the provisions of the 1993 Hague Convention on Inter-country Adoption, ratified by Government of India in 2003.
• CARA primarily deals with the adoption of orphaned, abandoned and surrendered children through its associated and recognised adoption agencies. In 2018, CARA has allowed individuals in a live-in relationship to adopt children from and within India.

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