Weekly Current Affairs (1st to 7th March 2024) Part - 2 | Current Affairs & Hindu Analysis: Daily, Weekly & Monthly - UPSC PDF Download

Rare Disease Day 2024

Context: Rare Disease Day, observed annually on the final day of February, serves as an international platform dedicated to raising awareness about rare diseases and their profound impact on patients and their families.

What is Rare Disease Day?

• Rare Disease Day is a globally coordinated initiative aimed at advocating for equality in social opportunities, healthcare access, and diagnosis and treatment options for individuals affected by rare diseases.
• The theme for Rare Disease Day 2024, "Share Your Colours," underscores the importance of collaboration and support within the rare disease community.
• Established in 2008, Rare Disease Day is observed worldwide on February 28th (or February 29th in leap years), coordinated by the European Organisation for Rare Diseases (EURORDIS) along with over 65 national alliance patient organizations.
• It serves as a pivotal moment for advocacy efforts at local, national, and international levels, engaging individuals, families, caregivers, healthcare professionals, researchers, policymakers, industry representatives, and the general public.

What Constitutes a Rare Disease?

Overview:

• Rare diseases are generally characterized by their infrequent occurrence in the population, with prevalence varying across different regions.
• The World Health Organization defines rare diseases as often debilitating lifelong conditions with a prevalence of 1 or fewer cases per 1000 population.
• Various countries have their own definitions; for instance, the US considers diseases affecting fewer than 200,000 individuals rare, while the European Union sets the threshold at no more than 5 in 10,000 people.
• Although India lacks a standardized definition, the Organisation of Rare Diseases India (ORDI) suggests that a disease should be deemed rare if it affects 1 in 5,000 individuals or fewer.

Global Impact of Rare Diseases:

Statistics:

• Approximately 300 million people worldwide are affected by rare diseases, with an estimated prevalence ranging from 3.5% to 5.9% of the population.
• Genetic factors account for 72% of rare diseases, encompassing over 7000 distinct disorders and symptom variations.
• Notably, 75% of rare diseases manifest in childhood, with onset occurring during this critical developmental period for 70% of cases.

Characteristics and Impact:

• Rare diseases manifest with diverse disorders and symptoms, varying not only among different diseases but also among individuals with the same condition.
• The chronic, progressive, and often life-threatening nature of rare diseases significantly impairs patients' quality of life, compounded by the lack of effective treatments that exacerbate the physical and emotional burden on patients and their families.

Challenges Faced by Individuals with Rare Diseases:

Obstacles:

• Delayed diagnosis due to limited scientific understanding and accessibility to reliable information.
• Inequities in accessing treatment and care contribute to social and financial hardships.
• Common symptoms may obscure underlying rare diseases, resulting in initial misdiagnoses.
• According to EURORDIS, the average time for rare disease patients to receive a diagnosis is five years, with over 70% waiting more than one year after seeking medical attention.
• Limited awareness and training among physicians in recognizing signs and symptoms of rare diseases further compound diagnostic challenges.

What is the Landscape of Rare Diseases in India?

Impact:

• India represents one-third of global rare disease cases, encompassing over 450 identified diseases.
• Despite this significant prevalence, rare diseases remain largely overlooked in India, with limited awareness, diagnosis, and drug development.
• Over 8 to 10 crore Indians are estimated to suffer from rare diseases, with over 75% being children.

Challenges in Policy and Implementation:

• The Ministry of Health and Family Welfare formulated a national policy for rare diseases in 2017 but withdrew it in 2018 due to implementation challenges.
• The revised first National Policy for Rare Diseases (NPRD) was announced in 2021, but problems persist, including the absence of a clear definition for rare diseases.

Treatment Accessibility and Funding:

• Less than 50% of identified rare diseases in India are treatable, with approved treatments available for only about 20 diseases.
• Access to approved treatments is limited to designated Centres of Excellence (CoEs), which are few (12) in number, unevenly distributed, and often lack coordination.
• The NPRD guidelines provide limited financial assistance per patient, insufficient for lifelong management and therapy of chronic rare diseases.

Challenges in Fund Utilization:

• Budget allocations for rare diseases have increased but remain low, with Rs 93 crore allocated for 2023-2024.
• Confusion and disparities in fund utilization among CoEs highlight inefficiencies in resource allocation.
• A staggering 51.3% of allocated funds remain unutilized, despite patients urgently needing treatment.
• Some CoEs struggle with underutilization of allocated funds, while others exhaust their budgets quickly, leading to unequal access to treatment.
• For instance, Mumbai exhausted all its funds while treating only 20 out of 107 patients, Delhi utilized less than 20% of its funds.
• The burden of funding treatment often falls on patients and their families, with governmental support falling short.
• Patients and advocacy groups call for sustainable funding from both the central and state governments to support rare disease treatment.
• Sustainable funding is crucial for patients, especially those who have exhausted their allotted funds and are struggling to continue treatment.

Moving Forward

• Establish a uniform definition of rare diseases to ensure consistency and clarity in policy implementation.
• Allocate increased funding for rare diseases to support drug development, therapies, and research endeavors.
• Expand the network of Centers of Excellence (CoEs) for rare diseases and enhance coordination among them.
• Establish satellite centers under CoEs to enhance accessibility and outreach efforts, particularly in underserved regions.
• Ensure responsible allocation of funds to maximize impact and address disparities in fund utilization.
• Establish a national registry for rare diseases to accurately report and delineate the list of rare diseases, alongside a centralized laboratory for their detection.
• Incentivize domestic drug manufacturers through the Production-Linked Incentive Scheme to foster the production of affordable medications.
• Implement the Comprehensive Rare Disease Care (CRDC) model to bridge the gap for patients and families affected by genetic disorders.
• The CRDC model provides a technical and administrative framework for hospitals to follow.
• Ensure affordable access to rare disease medications by reducing taxes on commercially available drugs, thereby expanding patient access.

Rajya Sabha Elections

Context: The recent Rajya Sabha elections in Uttar Pradesh, Himachal Pradesh, and Karnataka witnessed instances of cross-voting by MLAs (Members of Legislative Assembly) from different political parties. This has once again raised concerns regarding the integrity of the election process.

How are Rajya Sabha Elections Conducted?

Background:

• Article 80 of the Constitution mandates that representatives of each state to the Rajya Sabha are elected indirectly by the elected members of their respective Legislative Assembly.
• Rajya Sabha polls are conducted only if the number of candidates exceeds the number of vacancies.
• Historically, Rajya Sabha elections were often predictable, with candidates from parties holding a majority in the state assembly frequently winning unopposed due to limited competition.
• However, cross-voting during the June 1998 Rajya Sabha elections in Maharashtra resulted in the unexpected loss of a Congress party candidate.

Amendment to the Representation of the People Act, 1951:

• In an effort to curb instances of cross-voting, an amendment to the Representation of the People Act, 1951 was introduced in 2003.
• Section 59 of the Act was amended to mandate open ballot voting in Rajya Sabha elections.
• Under this amendment, MLAs are required to display their ballot paper to their party's authorized agent.
• Failure to do so, or showing the ballot to anyone else, results in disqualification of the vote.
• Independent MLAs are prohibited from displaying their ballots to anyone.

Rajya Sabha Election Procedure:

• Seat Allocation: The Rajya Sabha comprises 250 members representing states and union territories, including those nominated by the President from various fields.
  • Seats in the Rajya Sabha are distributed among states based on their population, with quotas allocated accordingly.
• Indirect Election System: Members of state legislative assemblies elect Rajya Sabha members through an indirect election system using proportional representation via the Single Transferable Vote (STV) method.
  • In this system, each MLA's voting power is determined by the population of their respective constituencies.
• Quotas: Candidates must secure a specific number of votes, known as quotas, to be elected. Quotas are calculated by dividing the total valid votes by the number of available seats plus one.
• Preferences and Surplus: MLAs rank their preferences for candidates on the ballot paper, with 1 indicating their top preference. If a candidate receives enough first preferential votes to meet or exceed the quota, they are elected.
  • If elected candidates have surplus votes, they are transferred to their second choice. If multiple candidates have surpluses, the largest surplus is transferred first.
• Elimination of Fewer Votes: If the required number of candidates are not elected after surplus transfers, the candidate with the fewest votes is eliminated, and their ballot papers are redistributed among remaining candidates until all available seats are filled.

Does Anti-Defection Law Apply to Rajya Sabha Elections?

Tenth Schedule and "Anti-Defection" Law:

• The Tenth Schedule of the Constitution, introduced by the 52^nd Constitutional Amendment Act in 1985, contains provisions related to the "anti-defection" law.
• It states that a member of Parliament or a state legislature who voluntarily gives up the membership of their political party or votes against the instructions of their party is liable for disqualification from the House.
• This instruction regarding voting is usually issued by the party whip.

Applicability of Tenth Schedule:

• However, the Election Commission clarified in July 2017 that the provisions of the Tenth Schedule, including the anti-defection law, are not applicable to Rajya Sabha elections.
• Therefore, political parties cannot issue any whip to their members for Rajya Sabha elections, and members are not bound by party instructions in these elections.

What is Cross Voting?

Background:

• Rajendra Prasad Jain won a seat in Bihar through cross-voting by Congress MLAs (in exchange for bribes) later, Jain's election was declared void by the Supreme Court in 1967.

About Cross Voting:

• Cross voting refers to a situation in which a member of a legislative body, such as a Member of Parliament or a Member of a Legislative Assembly, belonging to one political party, votes for a candidate or a party other than their own during an election or any other voting process.
• In the context of Rajya Sabha elections in India, cross voting can occur when members of a political party vote for candidates from other parties instead of the candidates nominated by their own party.
• This can happen due to various reasons, including disagreement with the party's candidate selection, inducements or pressures from other parties, personal relationships with candidates from other parties, or ideological differences.

What are the Implications of Cross Voting?

Negative Implications:

• Undermining Representation: Cross-voting can undermine the representation of the electorate.
• MLAs are expected to vote in alignment with the party's interests or the will of their constituents. When they deviate from this, it can lead to the election of candidates who may not have the support of the majority.
• Corruption: Cross-voting often occurs due to bribery or other corrupt practices, as illustrated in the example of Rajendra Prasad Jain's election. This undermines the integrity of the electoral process and erodes public trust in democracy.
• Jain won a seat in Bihar through cross-voting by Congress MLAs (in exchange for bribes) later Jain's election was declared void by the Supreme Court in 1967.
• Party Discipline: Cross-voting reflects a lack of party discipline, indicating internal divisions within political parties. It weakens party cohesion and stability, making it difficult for parties to pursue coherent policy agendas.
• Democratic Values: Cross-voting goes against the democratic principle of accountability, where representatives are expected to uphold the interests of their constituents and the broader public good. It prioritizes personal gain or party politics over democratic principles.

Potential Positive Implications:

• Independence: Cross-voting can signal a degree of independence among elected representatives, allowing them to vote according to their conscience or the interests of their constituents rather than strict party lines.
• This can lead to more nuanced decision-making and representation.
• Checks and Balances: Cross-voting, if driven by genuine differences in opinion or ideology, can serve as a check on the dominance of a single party or faction within the legislative body.
• It can prevent the concentration of power and promote greater balance and diversity of viewpoints.
• Accountability: In some cases, cross-voting may reflect dissatisfaction with party leadership or policies, forcing parties to introspect and address internal grievances. This can ultimately lead to greater accountability and responsiveness to the electorate.

What are SC’s Ruling Related to the Tenth Schedule and Rajya Sabha Election?

Kuldip Nayar vs. Union of India, 2006:

• The Supreme Court (SC) upheld the system of open ballot for Rajya Sabha elections.
• It reasoned that if secrecy becomes a source for corruption, then transparency has the capacity to remove it.
• However, in the same case the court held that an elected MLA of a political party would not face disqualification under the Tenth Schedule for voting against their party candidate.
• He/she may at the most attract disciplinary action from their political party.

Ravi S. Naik and Sanjay Bandekar vs. Union of India, 1994:

• The SC held that voluntarily giving up membership under the Tenth Schedule is not synonymous with only formally resigning from the party to which the member belongs.
• The conduct of a member both inside and outside the house can be looked into to infer if it qualifies as voluntarily giving up membership.

Moving Forward

• Enforcing stricter legislation and regulations to address electoral misconduct, such as bribery and corruption.
• This may entail imposing harsher penalties on perpetrators, enhancing transparency in campaign funding, and granting independent electoral authorities greater authority to ensure adherence to regulations.
• Encouraging political parties to implement internal mechanisms aimed at fostering discipline and accountability within their ranks.
• This might involve bolstering party leadership structures, promoting intra-party democracy, and cultivating a culture of ethical behavior.
• Raising awareness among voters and stakeholders regarding the significance of electoral integrity and the repercussions of activities like cross-voting.
• This could be achieved through public awareness campaigns, media coverage of electoral issues, and civic engagement programs designed to empower citizens to hold their representatives accountable.

Temple Discoveries Highlight Chalukya Expansion

Context: Archaeologists from the Public Research Institute of History, Archaeology, and Heritage (PRIHAH) have recently uncovered two ancient temples and a rare inscription in Mudimanikyam village, located in the Nalgonda district of Telangana.

What are the Key Highlights of the Recent Excavation?

• Temples: Situated at the outskirts of the village, these two temples date back to the Badami Chalukyan period, spanning from 543 AD to 750 AD. They exhibit a distinctive architectural fusion of Badami Chalukyan and Kadamba Nagara styles, following the Rekha Nagara format. Noteworthy findings within the temples include a panavattam (the base of a Shiva lingam) discovered in one sanctum sanctorum and a Vishnu idol found in another.
• Inscription: Among the discoveries is an inscription known as 'Gandaloranru', which is estimated to date back to the 8th or 9th Century AD.
• Significance: Traditionally, the Jogulamba temples at Alampur and the submerged sites of Yeleswaram were considered the outermost reaches of the Badami Chalukya influence. However, this new discovery significantly extends the known boundaries of the Chalukya kingdom.

What are the Key Features Related to the Chalukya Dynasty?

About: The Chalukya dynasty governed significant territories in southern and central India from the 6^th to the 12^th centuries.

• It comprised three distinct dynasties: the Chalukyas of Badami, the Eastern Chalukyas, and the Western Chalukyas.
  • The Chalukyas of Badami, originating in Vatapi (modern Badami in Karnataka), ruled from the early 6^th century until the mid-8th century, reaching their zenith under Pulakeshin II.
  • After Pulakeshin II's reign, the Eastern Chalukyas emerged as an independent kingdom in the eastern Deccan, centred around Vengi (in present-day Andhra Pradesh) until the 11^th century.
  • The rise of the Rashtrakutas in the 8^th century overshadowed the Chalukyas of Badami in the western Deccan.
  • However, their legacy was revived by their descendants, the Western Chalukyas, who ruled from Kalyani (modern Basavakalyan in Karnataka) until the late 12^th century.
• Foundation: Pulikesin I (c. 535-566 CE) is credited with fortifying a hill near Badami, laying the foundation for the Chalukya dynasty's ascendancy.
  • The city of Badami was formally founded by Kirtivarman (566-597), serving as the epicentre of Chalukya power and culture.
• Polity and Administration: The Chalukyas implemented a structured administrative system, dividing their realm into political units for effective governance.
  • These divisions included Vishayam, Rastram, Nadu, and Grama.
• Religious Patronage: The Chalukyas were notable patrons of both Saivism and Vaishnavism.
  • Beyond mainstream Hinduism, the Chalukyas also patronized heterodox sects, such as Jainism and Buddhism, exemplifying their commitment to religious diversity.
• Ravikirti, the poet-laureate of Pulikesin II, was a Jain scholar.
  • According to the traveller Hiuen Tsang, there were many Buddhist centres in the Chalukya territory wherein more than 5000 followers of the Hinayana and Mahayana sects lived.
• Architecture: Historically, in Deccan, Chalukyas introduced the technique of building temples using soft sandstones as medium.
  • Their temples are grouped into two: excavated cave temples and structural temples.
  • Badami is known for both structural and excavated cave temples.
• Pattadakal and Aihole are popular for structural temples.
• Literary: Chalukya rulers utilised Sanskrit for official inscriptions, showcasing their commitment to classical literature and language.
  • Despite Sanskrit's prominence, the Chalukyas also acknowledged the significance of regional languages like Kannada, recognizing them as the language of the people.
• Painting: Chalukyas adopted the Vakataka style in painting. Paintings are found in a cave temple dedicated to Vishnu in Badami.

Women, Business and the Law 2024

Context: The World Bank (WB) Group recently published the "Women, Business and the Law 2024" report, shedding light on the intricate challenges hindering women's participation in the global workforce. These obstacles impede their capacity to contribute to their own prosperity, as well as that of their families and communities.

Overview of the Women, Business and Law 2024 Report:

• This report utilizes various indicators to evaluate legal frameworks and public policy instruments concerning women's economic decisions and careers. It identifies persistent hurdles faced by women in different spheres of life.

Key Report Highlights:

Legal Frameworks Index:

• In high-income economies within the Organisation for Economic Co-operation and Development (OECD), 11 scored 90 or above, with Italy leading at 95, followed by New Zealand and Portugal at 92.5.
• Conversely, over 37 economies provide women with less than half of the legal rights enjoyed by men, affecting approximately half a billion women. High-income economies have an average score of 75.4.

Gender Disparities in Legal Rights:

• Globally, women only enjoy 64% of the legal protections that men do, particularly when considering legal discrepancies regarding violence and childcare. This is lower than the previous estimate of 77%.

Gap Between Legal Reforms and Women's Real Experiences:

• Despite the enactment of laws promoting gender equality in many countries, a significant gap exists between these laws and the actual experiences of women.
• Although 98 economies have laws mandating equal pay for work of equal value, only 35 have adopted pay-transparency measures to address the pay gap.

Challenges Faced by Countries:

• Togo stands out among Sub-Saharan economies, with laws granting women approximately 77% of the rights available to men. However, the country has only established 27% of systems necessary for full implementation.
• Women's safety remains a major concern, with the global average score being just 36. Only 39 economies have laws prohibiting sexual harassment in public spaces.
• In terms of childcare, only 78 economies provide financial or tax support for parents, and just 62 have quality standards governing childcare services.

Significant Hurdles for Women:

• Women encounter notable obstacles across various areas, such as entrepreneurship, where just one in five economies mandates gender-sensitive criteria for public procurement processes.
• The gender pay gap persists, with women earning 77 cents for every dollar paid to men. Moreover, disparities extend to retirement ages in 62 economies.
• Due to lower pay during their working years, career breaks for childcare, and earlier retirement, women often receive smaller pension benefits, leading to greater financial insecurity in old age.

How did India Perform in Women, Business and the Law 2024 Report?

• India’s rank has marginally improved to 113, with a score of 74.4%. While the country’s score has remained constant since 2021, its ranking witnessed a decline from 122 in 2021 to 125 in 2022 and further to 126 in the 2023 index.
• Indian women have just 60% of the legal rights compared to men, slightly below the global average of 64.2%.
• However, India outperformed its South Asian counterparts, where women have only 45.9% of the legal protections enjoyed by men.
• When it comes to constraints on freedom of movement and constraints related to marriage, India got a full score.
• India receives one of its lowest scores in the indicator evaluating laws impacting women’s pay.
• To enhance this aspect India could explore measures such as mandating equal pay for equivalent work, permitting women to work at night on par with men and enabling women to engage in industrial jobs on an equal footing with men.
• When it comes to supportive frameworks, India scored higher than both the global and South Asian averages.

What are the Recommendations of the Report?

• Eliminating discriminatory laws and practices hindering women from working or initiating businesses could result in a more than 20% increase in global gross domestic product.
• It has the potential to double the rate of global growth in the upcoming decade.
• Effective implementation of equal-opportunity laws depends on an adequate supporting framework, including strong enforcement mechanisms, a system for tracking gender-related pay disparities, and the availability of healthcare services for women who survive violence.
• It is more urgent than ever to accelerate efforts to reform laws and enact public policies that empower women to work and start and grow businesses.
• Increasing women's economic participation is the key to amplifying their voices and shaping decisions that affect them directly.