Daily Current Affairs 31 May 2023 – IAS Current Affairs
Current Affairs 31 May 2023 focuses on Prelims-Mains perspective. Major events are :
National Policy of Rare Diseases
Source: Hindu
GS II: Policies and Developmental Studies
What is discussed under National Policy of Rare Diseases?
- National Policy for Rare Diseases (NPRD)
- National Rare Diseases Committee
- Current Indian Scenario
Why in News?
The Delhi High Court has appointed a five-member panel to efficiently administer the Centre’s rare disease policy and ensure that its benefits reach sufferers.
National Policy for Rare Diseases (NPRD)
- The World Health Organisation defines rare illness as a debilitating lifelong disease or condition with a prevalence of 1 or fewer per 1000 people.
Image by mcmurryjulie from Pixabay - In March 2021, the government announced the National Policy for Rare Diseases (NPRD), 2021, to help people with rare diseases.
- The NPRD, 2021 includes:
- Provisions for promoting research and development for the detection and treatment of rare illnesses
- Promoting local drug development and manufacturing
- Creating a favourable environment for indigenous medication production for rare diseases at cheap rates
Aim
- To reduce the incidence and prevalence of rare diseases through an integrated and comprehensive preventive strategy that includes:
- Awareness generation
- Premarital, post-marital
- Pre-conception
- Post-conception screening and counselling programmes
- To prevent the birth of children with rare diseases
- To provide patients with access to affordable health care within the constraints of resources and competing health care priorities
National Rare Diseases Committee
- The National Rare Diseases Committee is a five-member group that was formed by the Delhi High Court to address the issues encountered by patients with rare diseases and to guarantee that patients receive effective treatment.
- Its goal is to guarantee that patients registered at the All-India Institute of Medical Sciences (AIIMS) in Delhi receive timely care and reap the benefits of the programme.
- The Committee’s wide mandate would be to take all necessary efforts to execute the National Rare Disease Policy, 2021.
- The group is made up of specialists from several sectors, including medical professionals, policymakers, and healthcare institution representatives.
- The court directed the panel to investigate the acquisition of treatments and pharmaceuticals, as well as the development of a logistical structure to deliver therapy.
Current Indian Scenario
- Data on how many people suffer from certain diseases that are considered uncommon internationally is insufficient.
- So far, all instances have been detected at tertiary hospitals.
- The scarcity of epidemiological data on the incidence and prevalence of uncommon diseases impedes comprehension of the disease burden and the establishment of a definition.
- So far, only a small number of diseases from tertiary care facilities in India have been reported, despite the fact that the scope may include 7000 to 8000 disorders.
- Hundreds of patients, primarily children, have enrolled with the Union Health Ministry’s ‘Digital Portal for Crowdfunding and Voluntary Donations for Patients with Rare Diseases’ under the National Policy for Rare Diseases, 2021.
- However, because to high expenses, financial restrictions, and competing health priorities, the government has been unable to completely fund their treatment.
- Commonly reported diseases:
- Primary immunodeficiency disorders:
- Lysosomal storage disorders (Gaucher’s disease, Mucopolysaccharidoses, Pompe disease, Fabry disease, etc.),
- Small molecule inborn errors of metabolism (Maple Syrup urine disease, organic acidemias, etc.)
- Cystic fibrosis
- Osteogenesis imperfecta
- Certain forms of muscular dystrophies
- Spinal muscular atrophy
World Energy Investment 2023
Source: IEA
GS II: Policies and Developmental Studies
What is discussed under World Energy Investment 2023?
- About Report
- Notable Findings
Why In News
- Recently, the International Energy Agency released a ‘World Energy Investment 2023 report.
About Report
- It provides a full update on the investment picture in 2022 and an initial reading of the emerging picture for 2023.
- It provides a global benchmark for tracking capital flows in the energy sector and examines how investors are assessing risks and opportunities across all areas of fuel and electricity supply, critical minerals, efficiency, research and development, and energy finance.
Important Finds
- It shows that investment in clean energy has increased in recent years, with the transition mainly fuelled by Electric Vehicles (EVs) and renewable power.
- Annual investments in green energy have outpaced those in fossil fuels during this period, recording a growth of 24% against 15%.
- However, investments are concentrated in advanced economies and China.
- Impact of the geopolitical events and pandemic
- Economic recovery from the COVID-19 pandemic coupled with global efforts in tackling energy scarcity have significantly propelled investments in the renewable energy sector.
- The report also highlights the influence of recent geopolitical events like Russia’s invasion of Ukraine has led to substantial instability in the fossil fuel markets.
- Volatility has inadvertently accelerated the deployment of various renewable energy technologies, despite triggering an immediate scramble for oil and gas resources.
- Investments in fossil fuels have been stagnant, and money flows into clean energy have considerably grown in recent years.
- In 2023, low-emission power sources are expected to attract nearly 90% of the total investment in electricity generation.
- Among these, solar energy shines brightest. Investment in solar energy is projected to exceed $1 billion per day in 2023, totaling $380 billion for the year.
- India continues to exhibit robust investment in solar energy. Brazil’s deployment of renewable energy is on a consistent upward trajectory, while investor interest is escalating in parts of West Asia, specifically Saudi Arabia, the UAE, and Oman.
The International Energy Agency (IEA)
- It is an autonomous organization that was set up in response to the 1973-74 oil crisis.
- The oil crisis was the result of an embargo imposed on the US and other developed countries by OPEC in retaliation for the US decision to support Israel during the Arab-Israel war.
- It is made up of 30 member countries (OECD countries) and is an important part of the global dialogue on energy, providing research, data/statistics, analysis, and recommendations on the global energy sector.
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