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G.S II - Health

India's Fight against Rare Diseases


Why in news?

February 29 is observed as Rare disease day, it aims to raise awareness and support for individuals with rare medical conditions.

What is rare disease?

The theme of rare disease day in 2024 is “Share Your Colours” underscores the importance of collaboration and support for individuals with rare diseases.

  • According to the World Health Organization (WHO), a rare disease is a debilitating lifelong disease or disorder with a prevalence of 10 or less per 10,000 population.
  • Rare diseases are broadly defined as diseases that infrequently occur in a population.
  • Indicators-
    • The total number of people with the disease
    • Disease prevalence
    • Availability/non-availability of treatment options.
  • Treatment- They can be very expensive going up to Rs 1 crore per year.
  • National Organization for Rare Disorders (NPRD)- It estimates that for a child weighing 10 kg, the annual cost of treatment for some rare diseases may vary from Rs 10 lakh to more than Rs 1 crore per year.

Status of rare disease in India

  • Rare diseases affect 1 or less per 1,000 population globally, with India accounting for one-third of cases.
  • Over 450 identified rare diseases exist in India, affecting approximately 8 crore-10 crore Indians.
  • As per an estimate, there are 7,000 known rare diseases with an estimated 300 million patients in the world. Of this, 70 million are in India.
  • They include inherited cancers, autoimmune disorders, congenital malformations, Hirschsprung’s disease, Gaucher disease, cystic fibrosis, muscular dystrophies and Lysosomal Storage Disorders (LSDs).

What are the challenges present in rare disease?

  • Lack of definition- India has a significant incidence of rare diseases, with over 450 identified there is no standard definition for rare disease in the country.
  • Late diagnosis- It takes an average of 7 years for rare disease condition to be diagnosed which increases the financial burden for patients and their families.
  • Skill deficit- Doctors often lack training on interpreting signs and symptoms.
  • Limited treatment options- Only less than 50% of identified rare diseases in India are treatable and it is done only in few Centres of Excellence (CoEs).
  • Fund deficit- The funds allocated foe rare disease are insufficient and there is a lack of parity in fund utilization among CoEs.
  • Policy paralysis- National Policy for Rare Disease 2021 has limited funds per patient, creating challenges for lifelong management and therapy.
  • High cost- The drug prices are too costly which is not affordable for poor people.

What can be done to overcome the challenges in rare disease?

  • Standard definition- India should establish a standard definition of rare disease.
  • Data collection- There is a need to enhance data collection and epidemiological assessments for better policymaking.
  • Increase fund allocation- The government should increase budgetary outlays for rare disease considering the chronic nature of rare disease.
  • Drug discovery- India should dedicate funds for drug development and therapy.
  • Encourage PPP- The public-private partnerships should be encouraged for funding, utilizing CSR initiatives.
  • Expand CoEs- The number of Centres of Excellence should be increased to ensure better coordination among themselves.
  • Social assistance program- The State governments should introduce social assistance programs.
  • Wider accessibility- The satellite centres should be developed under CoEs for larger reach of treatment and therapy of rare diseases.
  • Address drug price- The government should provide incentives for domestic manufacturers, reduce clinical trial requirements, and explore repurposed drugs.

GST can be withdrawn on life saving drugs.

  • Effective policy- The government should establish policies to ensure sustained and effective management of rare diseases.
  • Multifaceted approach- Battling rare diseases requires a holistic  approach that addresses 4A’s namely  affordability, availability, awareness, and accessibility.

Steps taken by India to combat rare disease

  • National Policy for Rare Diseases (NPRD), 2021- It outlines a comprehensive approach to address rare diseases in India.
  • Fund mechanism- NPRD policy will make use of a crowdfunding mechanism to cover the cost of treatment of rare diseases.
  • Registry-NPRD outlines a national hospital-based registry of rare diseases to ensure adequate data and comprehensive definitions of rare diseases are compiled properly for reaserch purposes.
  • Exemption from Custom duty -Medicines and foods needed for the management of 51 rare diseases have been exempt from custom duty.
  • Centres of Excellence (CoEs) – 8 CoEs have been identified for diagnosis, prevention and treatment under National Policy for Rare Diseases 2021.
  • Financial support - Up to Rs. 50 lakhs to the patients suffering from any category of the Rare Diseases and for treatment in any of the CoEs.
  • Nidan kendras -They have been set up for genetic testing and counselling services.
  • Kerala Against Rare Diseases (KARE)- It is Kerala’s initiative to devise a comprehensive care strategy to prevent and manage rare diseases, it will go beyond mere care to look at rare diseases in a holistic manner.

 

Reference

  1. The Hindu- India’s fight against rare disease
  2. The Hindu- KARE Initiative

G.S III - S & T

Status of India's R&D


Why in news?

Sustainable funding for science and research is crucial for India’s journey towards becoming a science power by 2047.

Status of India’s R&D

  • The UNESCO defines R&D as - ‘R&D is any creative systematic activity undertaken in order to increase the stock of knowledge, including knowledge of man, culture and society, and the use of this knowledge to devise new applications’.
  • National Science Day- The theme for 2024 is “Science for Sustainable Development”, the country aims to become a developed nation by 2047 thriugh science and technology.
  • In India, the government undertakes 60% of expenditure on Research and development (R&D), unlike other nations where private enterprise takes the lead.

Research

  • The India Innovation Index 2021 has found that the overall spending on R&D by India has been relatively low across the country.
  • India’s R&D expense has dropped to the current 0.64% of GDP from 0.8% in 2008-2009 and 0.7% in 2017-2018, whereas the world average stands at around 1.8%.
  • STIP, 2013- Science, Technology, and Innovation Policy noted that increasing Gross Expenditure on R&D (GERD) to 2% GDP has been a national goal for some time.
  • Most developed countries allocate between 2% and 4% of their GDP for R&D, US and UK have consistently exceeded 2% mark over the past decade
  • In 2021, OECD member countries on average invested 2.7% of their GDP in R&D.

What are the issues with India’s R&D?

  • Low R&D spending- India’s R&D spending is among the lowest globally, inadequate funding hinders the country’s ambitious science and technology goals.
  • Low private participation- The overreliance on public fund signals an immature financing system and a weak domestic market, it is due to low private sector contribution due to concerns about regulation, intellectual property rights etc.,
  • Fund deficit- Anusandhan National Research Foundation (ANRF)has faced delays in implementation as the strategies for raining private sector fund remain unclear.

ANRF has been established under ANRF Act 2023 Act which aims to seed, grow and promote research and development (R&D) and foster a culture of research and innovation throughout India’s universities, colleges, research institutions, and R&D laboratories.

  • Underutilization of budget-Ministries, such as the Department of Biotechnology and Department of Science and Technology, consistently under-utilize their allocated budgets.
  • Patent ownership- Majority of the patents filed by India are owned by MNCs with less than 10% owned by Indian companies, it indicates a potential gap in indigenous innovation and technology development.

Research and development

  • Lack of collaboration- There is a weak linkage between academia and private industry in India compared to Europe or America.
  • Diverse education standards- The Indian education system is diverse in standards, impacting the quality of research produced by universities.
  • Skewed focus- Indian research is primarily skewed towards basic research and lacks application-oriented R&D.
  • Weak enforcement of IPR- Inadequate enforcement of Intellectual Property Rights in some areas despite improvements in IPR regime.
  • Non-Competitive global R&D- Despite a growing talent pool, Indian R&D remains globally non-competitive.

What can be done?

  • Increase funding- India should aim for at least 3% of GDP annually until 2047 for meaningful impact on development.
  • Political will- It is important to prioritize and increase R&D expenditure.
  • Diversify funding sources- Encourage private sector participation through incentives like tax rebates and foreign direct investments.
  • Simplify regulatory mechanisms- To build investor confidence streamline approval process as this would make India an attractive FDI destination in R&D.
  • Capacity building- There is a need to enhance bureaucratic capacity for evaluating science projects.
  • Regular inspection- There is a need to regularly monitor and evaluate the project utilization to prevent it from under-utilization.
  • Provide incentives- The government can explore mechanisms to attract private investments by providing tax incentives.
  • Prioritize R&D- The Ministry of Finance should recognize R&D as core element of India’s growth journey.
  • Public sensitisation- The government should increase awareness among the public about the importance of sustainable funding for science.

 

Reference

The Hindu- Sustainable funding essential for India

G.S III - Agriculture

Women led FPOs


Why in news?

Farmer Producer Organisations (FPOs) have gained recognition as a vital tool to mobilise women farmers, supported by development agencies and policymakers.

Farmer Producer Organisations

  • An FPO is a legal entity that is owned and managed by farmers, which, in this context, includes cultivators, dairy producers, fishers, plantation owners, and others engaged in primary production in the agriculture sector.
  • They are incorporated/registered either under
  • Part IXA of Companies Act or
  • Co-operative Societies Act of the concerned States.
  • SFAC- Small Farmers’ Agribusiness Consortium (SFAC) provides support for FPOs promotion.
  • FPO is a generic name, which includes farmer producers’ organization incorporated for the purpose of leveraging collectives through economies of scale in production and marketing of agricultural and allied sector.
  • Example- Lokhit Bahuuddeshiya Krishi Producer Company is a women-led FPO that cultivates organic cotton and sells it to global brands.

FPO

What is the significance of women led FPOs?

  • Financial independence-Women in FPOs exhibit greater independence, with fewer needing to borrow from their households to pay FPO share capital.
  • High cropping intensity-Women farmers in FPOs have significantly higher cropping intensity (210%) and cultivate a greater diversity of high value crops.
  • Social inclusion- Rural women with prior experience in SHGs actively participate in women led FPOs, upholds democratic governance principles and fosters comprehensive inclusive development.
  • Financial involvement- Women led FPOs tend to have a higher average share capital which reflect active financial involvement.
  • Strong savers- Research has shown that women have lower rate o fnon-performing loans (2.9%) than men (4.2%).

In India several of the women’s collectives promoted by civil society organisations and the National Rural Livelihoods Mission (NRLM) have also demonstrated strong management and financial management skills, even for large sums of money.

  • Risk management- They adopt a cautious low risk approach which result in steady revenues and business sustainability.
  • Focussed approach- Women exhibits less political orientation compared to male counterparts, this allows for a more d=focussed approach to organizational goals.

What are the challenges faced by women led FPOs?

  • Gender inequality- Women often have limited access to information, control over time, mobility and financial resources which puts them in disadvantaged position than men.
  • Lack of data- There is no publicly available gender segregated data on FPOs, major promoters of FPOs like NABARD, SFAC etc., do not provide publicly available data on the number of women-centric FPOs.

Estimates suggest that only small % of existing FPOs are women FPOs.

  • Underrepresentation- Women constitute 75% of the full-time farm workforce but their participation in FPOs remains disproportionately low.
  • Policy paralysis- The guidelines for setting up 10,000 new FPOs in India by 2024 fails to address the gender disparities within the agricultural sector as they do not specifically account for their unique constraints and opportunity.
  • Lack of capacity development- Lack of education and training opportunities for women in agriculture can impede their ability to adopt modern technology.
  • Technological divide- The gender gap in access to and use of technology can be a significant challenge to women as they may have limited access to information and communication.

To know more about FPOs click here

What lies ahead?                                                                                                                                             

  • There is a need to collect gender segregated data on existing FPOs.
  • The government should provide larger equity grants and infrastructure support for women led FPOs.
  • India should promote gender equality in FPOs which is essential for sustainable agriculture sector growth.
  • The government should proposes a policy adjustment mandating at least 50% representation of women on the Boards of Directors of FPOs to foster inclusivity in agriculture sector.
  • FPOs with strong female leadership can have a positive ripple effect in rural communities, promoting gender equality, and encouraging young women to pursue careers in agriculture and entrepreneurship.

Steps taken by government to promote FPOs

  • Formation & promotion of new 10,000 FPOs - It is a Central Sector Scheme launched in 2020 to provided financial assistance up to Rs 18 lakh per FPO for a period of 3 years
  • FPO Credit in the Priority Sector- FPOs receive preferential treatment in terms of credit (loans or financial support) within the priority sector, it includes activities that are crucial for economic development such as agriculture.
  • Five-Year Tax Breaks- FPOs are eligible for tax breaks (reductions in taxes they need to pay) for a period of five years, this incentivizes FPOs to operate efficiently and invest in their activities.
  • Honey FPO Programme- Agriculture Ministry launched 5 FPOs for producing honey that would be set up with the help of National Agriculture Cooperative Marketing Federation of India (NAFED).
  • Deendayal Antyodaya Yojana- National Rural Livelihood Mission (DAY-NRLM)- It promotes FPOs by mobilizing farmers, building market linkages through a value chain development approach for farm based livelihood is an important strategy being pursued.
  • Venture Capital Assistance program- It is launched by SFAC, it works for the betterment of farmer-entrepreneur to evolve their agri-based business.
  • Mission for Integrated Development of Horticulture (MIDH)- It is a centrally sponsored scheme that aims to encourage the aggregation of farmers into groups such as FPOs to facilitate the economy of scale and scope.
  • FPO cell- A dedicated FPO cell was launched by Ministry of Agriculture to meet the objectives of FPOs.
  • One Nation One District Product- It is included in the "PM Formalisation of Micro food processing Enterprises (PMFME) Scheme", it provides support to FPOs, SHGs and producer cooperatives.
  • Lakhpati didi scheme-  It is a Rajasthan initiative to support economically disadvantaged women, providing them with a loan of INR 5 lakh without interest, this will provide support to women led FPOs.

 

Reference

    Business Line- How women led FPOs transforms Indian agriculture?

Prelim Bits

Prelim Bits 29-02-2024 | UPSC Daily Current Affairs


PAN tropical investigation of bio-Geo-chemistry and Ecological Adaptation (PANGEA)

Scientists across the globe convened in Cameroon to initiate a knowledge-sharing initiative to guide Project PANGEA.

  • Funding - National Aeronautics and Space Administration (NASA).
  • Aim - To understand the combined effects of climate and land-use change in tropical forests within and between continents.
  • Objectives -
    1. To examine similarities and differences in forest composition, structure and biogeochemical cycling across tropical regions.
    2. To evaluate the vulnerability and resilience of tropical forest ecosystems to global change.
    3. To guide decision making to support societal responses to climate change mitigation and adaptation and biodiversity conservation.

Tropical Forests

  • Tropical forests are located between the Tropics of Cancer and Capricorn.
  • It is also known as the Tropical Rainforests, since they receive rainfall throughout the year.
  • It constitutes only 6% of the world’s land surface but harbors 66-80% of all known species.
  • Significance -
    1. Crucial for Earth’s climate, biodiversity and carbon storage.
    2. Act as significant water and heat pumps, regulating regional and global climate systems.
    3. Contribute to over 30% of terrestrial net primary productivity, and store between 25 - 40% of total terrestrial biomass.
  • Threats -
    1. Deforestation and degradation.
    2. 2/3rd of global forest cover loss occurs predominantly in the tropics and sub-tropics.

Tropical Forests

Quick Facts

Arctic-Boreal Vulnerability Experiment (ABoVE)

  • Launched - In 2015.
  • It is a NASA Terrestrial Ecology Program field campaign conducted in Alaska and Western Canada.
  • ABoVE is a large-scale study of environmental change and its implications for social-ecological systems.

Large-Scale Biosphere-Atmosphere Experiment in Amazonia (LBA)

  • Launched - In 1990s
  • LBA is an international research effort led by Brazil to investigate the human influences on the Amazon rainforest Amazon.

Boreal Ecosystem-Atmosphere Study (BOREAS)

  • Conducted - From 1994-1996.
  • The primary goals of BOREAS were to find:
  1. How the boreal forest interacts with the atmosphere (via the transfer of gases and energy).
  2. How much carbon is stored in the forest ecosystem.
  3. How climate change will affect the forest.
  4. How changes in the forest affects weather and climate.

References

  1. Down To Earth | Study to unravel mysteries of tropical forests
  2. Tropical Forest Scoping | PANGEA

Obelisks

Rod-shaped fragments of RNA called “obelisks” were discovered in gut and mouth bacteria for the first time.

  • It is a new form of life lying between viruses and viroids on the scale of simplicity.
  • Like viroids, obelisks have a circular single-stranded RNA genome and no protein coat but, like viruses, their genomes contain genes that are predicted to code for proteins.
  • Even though they are smaller than viruses, they can still transmit instructions to cells.

Viruses, prions and viroids are non-living organisms that require a living cellular host in order to reproduce.

  • All obelisks encode a single major protein known as obulin.
  • Obelisks may cause neither harm nor benefit to their microbial host, or to humans.
  • The discovery was made possible using data obtained using a powerful technique called next-generation sequencing (NGS).
  • The researchers linked one particular obelisk to the bacterial species Streptococcus sanguinis, commonly found in the human mouth.

Important terms

  • Virus - A microscopic, non-cellular structure that consists of a nucleic acid molecule covered by a protein coat. It is an intracellular parasite.
  • Virion - The active, infectious form of a virus outside the host cell. It has both nucleic acid as well as protein layers and is an extracellular parasite.
  • Prion - A type of protein (has no genetic material) that can cause disease in animals and humans by triggering normally healthy proteins in the brain to fold abnormally.
  • Viroids - Small, single-stranded, circular RNA that do not encode any protein.
  • Virusoids - Single stranded (ss) RNAs that require other helper viruses to establish an infection.

oblesik

Viruses

Viroids

 

  • Discovered - 1898
  • Composed of - Nucleic acid (DNA or RNA) core that serves as the genetic material.
  • Surrounded by - A protein coat, and, in some cases, a lipid (fat) layer outside that coat.
  • Size - Larger in than viroids
  • Host - It infects both plants and animals.
  • Example - Tobacco mosaic virus, Hepatitis- C.
  • Discovered - 1971
  • Composed of - Viroids circular single stranded RNA.
  • Surrounded by - Did not contain the lipid layer or the protein coat found in viruses.
  • Size - Smaller than viruses.
  • Host - Only plants are known to be infected by viroids.
  • Example - Potato spindle tuber viroid.

 

References

  1. The Hindu – Obelisks join viruses, viroids as 3rd unusual life form
  2. The Conservation – A new virus-like entity has just been discovered
  3. Vice – Scientists discovered strange ‘entities’ called ‘obelisks’

Panda Diplomacy

China is renewing its panda diplomacy project as it is planning to loan the San Diego Zoo a pair of giant pandas.

  • Panda diplomacy - The Chinese government gifts or loans pandas endemic to the country to other countries as a symbol of friendship or soft diplomacy, hence leading to the phrase panda diplomacy.
  • Loaning Pandas - China Wildlife Conservation Authority signed agreements with San Diego and Madrid, for loaning pandas, and is also in talks with zoos in Washington D.C. and Vienna, Austria for the same.
  • Tang Dynasty - Panda diplomacy essentially picked up in the mid-to-late 20th century, however it existed as early as during the Tang Dynasty that ruled between 7th and 10th century.

In 2023, Chinese President Xi Jinping similarly described pandas as envoys of friendship between the Chinese and American peoples.

  • Modern diplomacy - China has gifted pandas to countries like the U.S., the U.K., France, and Japan, and 1972 is often believed to be the start of modern panda diplomacy.
  • China stopped gifting pandas in early 1980s, and instead started loaning them at a fee of around $1 million per year.

Panda deals with Canada, France, and Australia coincided with these countries’ uranium deals and contracts with China.

Giant Pandas

  • Scientific name - Ailuropoda melanoleuca.
  • Habitat - Temperate forests high in the mountains of southwest China.
  • Diet - Feed entirely on bamboo.
  • Giant Panda is the logo of WWF since its founding in 1961.
  • IUCN Status - Vulnerable

References

  1. The Hindu – What is China’s panda diplomacy?
  2. The Indian Express – China signs panda conservation pact with US zoo
  3. BBC – A brief history of 'panda diplomacy'

BioTRIG

A new waste management technology that allows pyrolysis at a community to help rural Indians cut indoor air pollution, improve soil health, and generate clean power, introduced.

Pyrolysis

  • The term ‘pyrolysis’ has Greek roots and can be roughly translated as “fire separating”.
  • Pyrolysis is the thermal decomposition of materials at elevated temperatures (400-500 degree Celsius) in an inert atmosphere.
  • It is the heating of an organic material, such as biomass, in the absence of oxygen. 
  • It involves a change in chemical composition and is most commonly used in the treatment of organic materials.
  • One of the most important applications of this process is in the production of ethylene and other important carbon compounds from coal and petroleum.

  • BioTRIG - It is a community level pyrolysis system that runs on villagers’ waster.
  • BioTRIG can provide multiple benefits to the Below Poverty Level (BPL) rural communities.
  • The project also envisions using clean-burning bio-oil to replace dirty cooking fuels in homes and using bio char to store carbon, while improving soil fertility.

References

  1. Down To Earth – New waste management technology
  2. ARS USDA – What Is Pyrolysis?
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