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03 Apr, 2021

59 Min Read

National Policy for Rare Diseases, 2021

GS-II : Government policies and interventions Government policies and interventions

Rare diseases in India

  • According to the government, so far only about 450 diseases have been recorded in India from tertiary care hospitals that are globally considered rare diseases.
  • The most commonly reported diseases include Haemophilia, Thalassemia, Sickle-cell Anaemia and Primary Immuno Deficiency in children, auto-immune diseases, and Lysosomal storage disorders such as Pompe disease, Hirschsprung disease, Gaucher’s disease, Cystic Fibrosis, Hemangiomas and certain forms of muscular dystrophies.
  • There are 7,000 - 8,000 rare diseases, but less than 5% have therapies available.
  • About 95% of rare diseases have no approved treatment and less than 1 in 10 patients receive disease-specific treatment.
  • Where drugs are available, they are expensive.

National Health Policy for Rare Diseases, 2020

  • The Delhi High Court directed the Centre to finalise the National Health Policy for Rare Diseases of 2020 by March 31 and make operational provision of crowdfunding envisaged under the law for the treatment of high-cost rare diseases.
  • Justice Prathiba M. Singh passed the direction while hearing two different pleas concerning children, who are suffering from Duchenne muscular dystrophy, a condition that causes progressive muscle degeneration and weakness in the victim.

About National Policy for Rare Diseases, 2020

  • It proposes to set up a registry under the Indian Council of Medical Research (ICMR) to create a database.
  • To provide financial assistance of up to Rs 15 lakh to Ayushman Bharat beneficiaries for rare diseases that require a one-time treatment in tertiary hospitals only.
  • It also suggests voluntary crowdfunding as an alternate means of financial support and notifying government hospitals to facilitate treatment.
  • Alternatively, the draft proposes to set up a digital platform for voluntary crowdfunding.
  • The draft policy also categorises rare diseases under three categories based on clinical experiences and treatment availability.
  • The policy also states that in the absence of data to clearly define rare diseases, such diseases in India will construe the three categories as identified in the policy.

It offers no clarity on long-term financial assistance, and appears designed on donations

Criticism of the Draft Policy

  • The government, in its policy paper, has proposed financial support of up to ?15 lakh under an umbrella scheme of the Rashtriya Arogya Nidhi for those rare diseases that require a one-time treatment.
  • Beneficiaries for such financial assistance would not be limited to Below Poverty Line (BPL) families, but extended to 40% of the population eligible as per the norms of the Pradhan Mantri Jan Arogya Yojana, for their treatment in government tertiary hospitals only.
  • “The 2017 policy on rare diseases had proposed a ? 100 crore corpus fund allocation for the treatment of patients with rare diseases, which was a Centre-State partnership of 60:40, with each State forming a technical committee to evaluate patients’ applications. That has come down to ? 15 lakh support for diseases needing one-time treatment. Clearly, now, after a major lag, the policy has come with no hope in sight,” noted a release from the Lysosomal Storage Disorders Support Society.
  • It appears the entire policy is drafted to justify that government cannot provide treatment due to high cost as it is resource constrained.
  • The policy has adopted a very narrow scope limited to only 3 categories while ignoring those where treatment is yet to be developed and R&D is required.

Rashtriya Arogya Nidhi (RAN) (formerly National Illness Assistance Fund)

  1. It was set up in 1997 and provides financial assistance to patients living with BPL and suffering life-threatening diseases like heart, liver, kidney and cancer.
  2. Funding: Initial contribution of Rs. 5 crores by the Ministry of Health and Family Welfare (MoHFW). Apart from that, Fund could also be subscribed to by individuals, corporate bodies in the public or private sector, philanthropic organisations etc. in India and Abroad (subject to FCRA regulations)
  3. A revolving fund has been set up in 12 Govt hospitals
    1. For financial assistance up to ceiling of Rs 2 lakhs per patient (Rs 5 lakh for emergency cases since 2015).
    2. In 2015, Govt enhanced the power of Govt hospitals to sanction assistance from 2 lakhs to Rs. 5 lakhs. For assistance beyond Rs 5 lakhs (since 2015), the matter is referred to MoHFW.
    3. Up to Rs. 10 Lakh can be sanctioned to 1 patient, subject to approvals by the technical committee of RAN.
    4. Reimbursement of medical expenses already incurred by the patients is not permissible under RAN.
  4. No grant is released for patients seeking treatment at private hospitals.
  5. Common diseases for which other schemes provide free treatment are also not eligible for grants.
  6. All contributions to TAN by resident entities are exempted from Income tax.
  7. All States / UTs have been “advised” to set up State Illness Assistance Fund.
  8. Within RAN, Govt also provides financial assistance through Health Minister's Cancer Patient Fund (HMCPF) set up in 2009 for cancer patients. It has an amount of 100 crores.
  9. Those who are not covered under RAN, are covered under Health Minister's Discretionary Grant with financial assistance up to Rs. 1.25 lakhs.

What is the news?

  • The Delhi High Court has set up a special committee to find a time-bound solution on ways to provide treatment and therapy options to patients suffering from rare diseases.
  • Justice Prathiba M. Singh ordered the committee to also give “immediate concrete proposals for crowdfunding of the costs of treatment for children with rare diseases”.
  • The High Court’s direction came while hearing a bunch of petitions filed by patients suffering from rare diseases such as Duchenne Muscular Dystrophy (DMD) and Hunter’s syndromes seeking direction to the government to provide them uninterrupted free treatment in view of the exorbitant cost of treatment.

What is DMD and Hunter’s syndromes?

  • DMD is a condition that causes progressive muscle degeneration and weakness in the victim.
  • Hunter’s syndromes is a rare disease that is passed on in families. It mostly affects boys and their bodies cannot break down a kind of sugar that builds bones, skin, tendons, and other tissues.

To further read the news on Orphan drugs and Rare diseases: click here

Source: TH

New irrigation techniques - PMKSY

GS-III : Economic Issues Agriculture

New irrigation techniques - PMKSY


  • Water resources development & management are planned, funded, executed and maintained by the State Governments (PT Pointer) themselves as per their own resources and priorities.
  • In order to supplement the efforts of the State Governments, Government of India provides technical and financial assistance to State Governments to encourage sustainable development and efficient management of water resources through various schemes and programmes.

Pradhan Mantri Krishi Sinchayee Yojana (PMKSY)

  • PMKSY was launched during 2015-16 by the Central Government with the following components, Accelerated Irrigation Benefits Programme (AIBP), Har Khet Ko Pani (HKKP), Per Drop More Crop (PDMC) and Watershed Development (WD).
  • PMKSY is strategize by focusing on end-to end solution in irrigation supply chain, viz. water sources, distribution network, efficient farm level applications, extension services on new technologies & information etc.
  • Funding mechanism has been approved by the Government for providing Central and State Share under Long Term Irrigation Fund (LTIF) through NABARD.
  • PMKSY focuses on irrigation techniques by, among others,
  1. Promoting efficient water conveyance and field application devices within the farm viz, underground piping system, Drip & Sprinklers, pivots, rain-guns and other application devices etc.;
  2. Promotion of scientific moisture conservation and run off control measures to improve ground water recharge so as to create opportunities for farmer to access recharged water through shallow tube/dug wells,
  3. Creation of new water sources;
  4. repair, restoration and renovation of defunct water sources;
  5. construction of water harvesting structures, secondary & micro storage, groundwater development, enhancing potentials of traditional water bodies at village level.
  6. Use of Underground Pipelines (UGPL) in the Distribution Network of the projects has been actively promoted for increasing the water conveyance efficiency and overcoming the issues related to Land Acquisition, evaporative/ percolation losses etc.
  • Department of Agriculture, Cooperation & Farmers’ Welfare is implementing Per Drop More Crop component of PMKSY.
  • It mainly focuses on water use efficiency at farm level through precision/micro irrigation.
  • Besides promoting precision irrigation (Drip and Sprinkler Irrigation System) and better on-farm water management practices to optimize the use of available water resources, this component also supports micro level water storage or water conservation/management activities to supplement micro irrigation.

Command Area Development and Water Management (CADWM)

  • The HKKP- Command Area Development and Water Management (CADWM) program has been taken up with objectives of
  1. utilize Irrigation Potential Created (IPC) under the project soon after its creation;
  2. improve water use efficiency;
  3. increase agricultural productivity & production; and
  4. bring sustainability in the irrigated agriculture in a participatory environment.
  • Under CADWM Scheme, States are also encouraged to use the underground pipeline network instead of conventional field channels.
  • The implementation of Participatory Irrigation Management (PIM) is also being promoted through CADWM.

Other Schemes

  • The Surface Minor Irrigation (SMI) and Repair, Renovation and Restoration (RRR) of Water Bodies schemes have multiple objectives like expanding cultivable area under assured irrigation, improving water use efficiency, ground water recharge, improvement and restoration of water bodies thereby increasing the tank storage capacity and revival of lost irrigation potential, increased availability of drinking water, improvement of catchment of tank commands etc.
  • Central Ground Water Board is implementing innovative schemes for Aquifer Rejuvenation under ‘Ground Water Management and Regulation’ scheme in select overexploited blocks of the Aspirational districts on pilot basis.
  • Water Harvesting and Recharge Augmentation are completed as a pilot project through construction of Bridge cum Bhandaras in districts of Wardha and Amravathi in Maharashtra.
  • Further, a joint Action Plan has been prepared with the Ministry of Rural development for effective implementation of water conservation and artificial recharge structures in convergence with Mahatma Gandhi National Rural Employment Guarantee Scheme (MGNREGS).
  • Ground Water Irrigation component of PMKSY-HKKP
  1. It aims to provide financial assistance to States to provide assured ground water irrigation for small and marginal farmers, in rain-fed areas.
  2. Schemes is applicable only in areas having stage of ground water development less than 60%, average rainfall more than 750 mm rainfall and with shallow ground water levels (less than 15 m bgl).
  3. The scheme is effectively launched in 2019-20, after revision of operational guidelines of the scheme.
  • National Water Mission (NWM) has taken up Jal Shakti Abhiyan:
  1. Catch the Rain and Sahi Fasal campaigns for water conservation. “Jal Shakti Abhiyan: Catch the Rain” is under implementation in all districts, rural as well as urban areas, of the country with the main theme “Catch the Rain, where it falls, when it falls”.
  2. The period of the campaign is from 22nd March, 2021 to 30th November, 2021 – the pre-monsoon and monsoon period in the country.
  3. ‘Sahi Fasal’ campaign was launched by NWM on 14.11.2019 to nudge farmers in the water stressed areas to grow crops which are not water intensive, but use water very efficiently; and are economically remunerative; are healthy and nutritious; suited to the agro-climatic- hydro characteristics of the area; and are environmentally friendly.

Source: PIB

Production Linked Incentive (PLI) Scheme for Food Processing Industry

GS-III : Economic Issues Food processing industry

Production Linked Incentive (PLI) Scheme for Food Processing Industry


  • The food processing sector in India encompasses manufacturing enterprises in all the segments from micro to large industries.
  • India is having competitive advantage in terms of resource endowment, large domestic market and scope for promoting value added products.
  • Achieving full potential of this sector would require Indian companies to improve their competitive strength vis-a-vis their global counterpart in term of scale of output, productivity, value addition and their linkages with the global value chain.

About the PLI Scheme

  • The Production Linked Incentive Scheme for Food Processing Industry has been formulated based on the Production Linked incentive scheme of NITl Aayog under "AatmaNirbhar Bharat Abhiyaan for Enhancing India's Manufacturing Capabilities and Enhancing Exports".
  • The Union Cabinet chaired by the Prime Minister Shri Narendra Modi has approved the Central Sector Scheme - "Production Linked Incentive Scheme for Food Processing Industry (PLISFPI)" to support creation of global food manufacturing champions commensurate with India's natural resource endowment and support Indian brands of food products in the international markets with an outlay of Rs. 10900 crore.

Objectives of the Scheme:

The objectives of the Scheme are to support food manufacturing entities with stipulated minimum Sales and willing to make minimum stipulated investment for expansion of processing capacity and Branding abroad to incentivise emergence of strong Indian brands:

  1. Support creation of global food manufacturing champions;
  2. Strengthen select Indian brand of food products for global visibility and wider acceptance in the international markets;
  3. Increase employment opportunities of off-farm jobs,
  4. Ensuring remunerative prices of farm produce and higher income to farmers.

Salient features:

  1. The first component relates to incentivising manufacturing of four major food product segments viz. Ready to Cook/ Ready to Eat (RTC/ RTE) foods, Processed Fruits & Vegetables, Marine Products, Mozzarella Cheese.
  2. Innovative/ Organic products of SMEs including Free Range -Eggs, Poultry Meat, Egg Products in these segments are also covered under above component.
  3. The selected applicant will be required to undertake investment, as quoted in their Application (Subject to the prescribed minimum) in Plant & Machinery in the first two years i.e. in 2021-22 & 2022-23.
  4. Investment made in 2020-21 also to be counted for meeting the mandated investment.
  5. The conditions of stipulated Minimum Sales and mandated investment will not be applicable for entities selected for making innovative/ organic products.
  6. The second component relates to support for branding and marketing abroad to incentivise emergence of strong Indian brands.
  7. For promotion of Indian Brand abroad, the scheme envisages grant to the applicant entities for - in store Branding, shelf space renting and marketing.
  8. Scheme will be implemented over a six year period from 2021-22 to 2026-27.
  9. The scheme will be rolled out on All India basis.
  10. The scheme shall be implemented through a Project Management Agency (PMA).

Source: PIB

Migratory Birds Found Dead near Pong Lake

GS-III : Biodiversity & Environment Biodiversity & Environment

Migratory Birds Found Dead near Pong Lake

As many as 27 migratory birds died on account of avian influenza in Himachal Pradesh’s Pong Dam Wildlife Sanctuary.

  • The lake is fed by the Beas River. Its numerous perennial tributaries are Gaj, Neogal, Binwa, Uhl, Bangana, and Baner.
  • Government of India also declared Pong Dam Lake as a “Wetland of National Importance”
  • The sanctuary area is covered with tropical and subtropical forests & it shelters a great number of Indian Wildlife animals.
  • The sanctuary is a host to around 220 species of birds belonging to 54 families. Migratory birds from all over Hindukush Himalayas and also as far as Siberia come here during winter.

About Ramsar Convention-

  • It was signed in 1971 in the Iranian city of Ramsar and is one of the oldest inter-governmental accords for preserving the ecological character of wetlands.
  • It is also known as the Convention on Wetlands.
  • Its aim is to develop and maintain an international network of wetlands which are important for the conservation of global biological diversity and for sustaining human life through the maintenance of their ecosystem components, processes and benefits.

Montreux Record

  • Montreux Record under the Ramsar Convention is a register of wetland sites on the List of Wetlands of International Importance where changes in ecological character have occurred, are occurring, or are likely to occur as a result of technological developments, pollution or other human interference.
  • It is maintained as part of the Ramsar List.
  • Currently, two wetlands of India are in Montreux record: Keoladeo National Park (Rajasthan) and Loktak Lake (Manipur).
  • Chilika lake (Odisha) was placed in the record but was later removed from it.

Source: TH

International Ranger Award Winner from Rajaji Tiger Reserve

GS-III : Biodiversity & Environment Conservation

International Ranger Award Winner from Rajaji Tiger Reserve

Mahinder Giri, a range officer from Rajaji Tiger Reserve won the prestigious International Ranger Award. He is the only ranger from Asia to win this award recently.

About the International Ranger Award:

  • The International Ranger Award was created in 2020.
  • It is conferred by The IUCN World Commission on Protected Areas(WCPA) in collaboration with the International Ranger Federation, Global Wildlife Conservation, and Conservation Allies.
  • The award aims to highlight the extraordinary work of rangers in protected and conserved areas worldwide.

About World Commission on Protected Areas(WCPA):

  • The World Commission on Protected Areas(WCPA) is one of the commissions of the International Union for the Conservation of Nature(IUCN).
  • WCPA works by helping governments and others to plan
    • Protected areas and integrate them into all sectors
    • Providing strategic advice to policymakers
    • Strengthening capacity and investment in protected areas and
    • Convening the diverse constituency of protected area stakeholders to address challenging issues.
  • Headquarters: Gland, Switzerland.

About International Ranger Federation(IRF):

  • Founded in: 1992 in Peak National Park in the UK.
  • It aims to actively promote and support the formation of Ranger Associations around the world. Also, it ensures the Rangers are adequately supported and represented.

About Conservation Allies:

  • Conservation Allies partners with NGOs working on biodiversity conservation around the globe.

About Global Wildlife Conservation

  • Global Wildlife Conservation is a Wildlife Conservation charity. It is located in Texas, United States.
  • The organisation conserves the diversity of life on Earth by protecting and restoring wildlife and habitat. It conducts its operations in more than 50 countries.

Source: TH

President Biden Revokes Immigrant Ban

GS-II : International Relations U.S.A

President Biden Revokes Immigrant Ban

In 2020 the US President imposed a ban on H-1B visas. The current US President decided to reverse the ban & allowed a 2020 ban to expire on March 31st.

About the 2020 H1-B Visa Ban:

  • In 2020, the previous US President signed an executive order suspending the entry of H-1B and other foreign work visa holders.
  • This decision was to protect American jobs after the Covid-19 pandemic impacts. However, the ban did not have its intended impact.

Why was it allowed to expire?

  • H-1B visa allows cheap labour in the US, they are beneficial to US companies. It is helpful in getting inexpensive but highly skilled and trained workers.
  • Hence, the US President has decided to reverse the ban to allow companies to hire new workers.

Impact on the Indian IT industry:

  • The US government has a cap of 85,000 total H-1B visas for each year.
  • Of these, 65,000 H-1B visas are issued to highly skilled foreign workers & the rest 20,000 can be additionally allotted to highly skilled foreign workers having a higher education or master’s degree from a US university.
  • Indian IT companies are among the biggest beneficiaries of this regime. Since the 1990s they have had the highest share in the total number of visas issued each year.
  • Hence, this decision will mean the availability of a greater workforce for IT companies.

About H-1B visa:

  • H1-B is a non-immigrant visa. It allows US companies to employ foreign workers on the basis of theoretical or technical expertise.
  • H1-B Visas are generally approved for a period of three years for a person. But many visa holders change employers to extend their US stay.
  • Further, most IT companies in the US hire from the pool of H-1B visa-approved workers. As they are already present in the US to keep their costs in check. Such workers are often hired by the companies as subcontractors. H1B Visa
  • It is most popular among Indian IT companies. Issued for a period of 3 to 6 years.
  • Meant for persons in Specialty Occupation: to work in a speciality occupation, one requires a higher education degree or its equivalent.
  • The total number of H-1B visas issued annually: is 85,000.
  • Of these, 65,000 H-1B visas are issued to highly skilled foreign workers, while the rest 20,000 can be additionally allotted to highly skilled foreign workers who have a higher education or master’s degree from an American university.
  • Indian nationals have been receiving about 70% of these work permits, the majority of them, software engineers working for technology companies.
  • H-1B visa holders who are currently not in the US can still re-enter the country. This visa ban also does not impact people waiting for visa renewals who are already in the US.

H2 B Visa

  • It permits employers to hire foreign workers to come temporarily to the United States and perform temporary nonagricultural services or labor on a one-time, seasonal, peak load or intermittent basis.
  • H-2B visa holders are allowed for one year, with renewal for two years.

L Visa

  • Meant to transfer candidates who already work for a foreign branch of a US-based company, or are planning to open operations in the US of a foreign-based company.
  • Holders are granted an initial three years of stay in the U.S, which is subject to further extension up to 7 years.
  • The key difference between H1B and H1B1 visas:
  • H-1B visa permits for “dual intent” which means that a foreign national will be coming to work in a professional position temporarily while also intending to immigrate to the United States at some point in time in the future. H-1B visa holders can apply for permanent residency by applying for a green card.
  • H1B1 visa applicants, however, have to demonstrate that they do not intend to immigrate to the United States at all.

Source: TH

17th BIMSTEC Summit- Key Talking Points

GS-II : International Relations Bilateral groupings and agreements

17th BIMSTEC Summit- Key Talking Points

India’s External Affairs Minister recently attended the 17th ministerial meet of the BIMSTEC (Bay of Bengal Initiative for Multi-Sectoral Technical and Economic Cooperation) countries.

About the Ministerial Meet:

  • Sri Lanka Chaired the 17th Ministerial Meeting.
  • Dr. S. Jaishankar reiterated India’s commitment to take BIMSTEC forward.


  • BIMSTEC is a regional organization consisting of members from South Asia and South-East Asia. It was founded in 1997 through the Bangkok Declaration.
  • The organization aims to harness mutual cooperation in multiple areas by using regional resources and geographical advantage.
  • It comprises seven Member States:
    • Five from South Asia including Bangladesh, Bhutan, India, Nepal, Sri Lanka
    • Two from Southeast Asia including Myanmar and Thailand.
  • BIMSTEC Chairmanship rotates among member countries alphabetically.
  • Nearly 1.5 billion people or 22% of the global population comes under the BIMSTEC. Together, BIMSTEC has a combined gross domestic product (GDP) of $2.7 trillion.
  • Currently, the BIMSTEC is involved in 15 sectors. This includes sectors such as trade, technology, agriculture, tourism, fisheries, energy, and climate change among others for sectoral cooperation.
  • The First Summit Meeting of the Heads of the BIMSTEC Countries was held in Bangkok, Thailand in 2004.
  • Headquarters: Dhaka, Bangladesh.

Source: TH

New Small Freshwater Fish found- Schistura Hiranyakeshi

GS-III : Biodiversity & Environment Wildlife & Fauna

New Small Freshwater Fish found- Schistura Hiranyakeshi

It is a new small freshwater fish species discovered near Amboli in Sawantwadi tehsil of Sindhudurg district.

  • It is a rare sub-species of Schistura, a freshwater loach.
  • Named after the Hiranyakeshi River near Amboli village, this fish is a colourful fish that lives in water and streams in an abundance of oxygen.
  • It was important to conserve this species as it might face extinction due to fishing activities.

Jammu and Kashmir Lakes

  • Srinagar’s Dal Lake along with five other ones- Wular Lake, Nigeen Lake in the Kashmir region; Sanasar Lake, Manasbal Lake and Purmandal lake or Chotta Kashi in Jammu and Kashmir are to be declared protected wetlands.=
  • Wetlands of Jammu and Kashmir and recommended their notification under,
    1. Environment Protection Act, 1986 and
    2. Wetland (Conversation & Management) rules.
  • Forest Department is the nodal department for the preparation of digital inventory, documentation and development of a geospatial database on wetlands.

Source: IE

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