Current Affairs 29-FEB-2024 (The Hindu)

Rare Diseases

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Why in News?

The tragic death of 19-year-old Suhani Bhatnagar from a rare disorder coincided with Rare Disease Day, highlighting India's challenges in awareness, diagnosis, and treatment. Despite government efforts, issues persist due to lack of clear definitions, inadequate funding, and insufficient healthcare infrastructure. Timely diagnosis remains a major challenge, with treatments available for only a fraction of identified rare diseases. The government must increase funding and improve healthcare infrastructure to effectively combat rare diseases in India.

Rare Diseases

• Defined by the World Health Organization (WHO) as affecting 1 or fewer per 1,000 population.
• There are over 7,000 types of rare diseases globally, but only 5% of them have treatments available.
• In India, there are over 450 identified rare diseases, affecting 70-100 million people, mainly children.

Challenges in India

• Low awareness, insufficient diagnosis, and inadequate drug development are major challenges.
• The 2017 National Policy for Rare Diseases was withdrawn, and the 2021 revision still faces issues like unclear disease definition, inadequate funding, and limited treatment availability.

Diagnosis and Treatment

• The average diagnosis time for rare diseases is seven years, with a lack of awareness among healthcare professionals.
• Few rare diseases have approved treatments in India, and they are available in a limited number of specialized centers.

Budget and Funding

• The National Policy for Rare Diseases suggests crowdfunding for treatments, shifting the responsibility from the government to the public.

Proposed Measures

• Standardize rare disease definitions, increase budget allocations, and secure dedicated funding for drug development.
• Expand specialized centers, ensure responsible fund utilization, and leverage public-private partnerships for financial support.
• Other measures include waiving taxes on imported medicines, promoting domestic drug manufacturing, easing clinical trial requirements, and extending tax exemptions to more life-saving drugs.

Conclusion

The government intervention is necessary to ensure better care and support for those affected by rare diseases in India. Reliance solely on market forces is insufficient for addressing the needs of rare disease patients.

Dermatomyositis

An autoimmune condition causing muscle and skin inflammation, mainly affecting children (5-15 years) and middle-aged adults (40-60 years), with a higher incidence in women.

Key Symptoms

• Muscle swelling
• Red/purple rashes
• Weakness
• Fatigue

Diagnosis

Diagnosis involves blood tests, MRI scans, and biopsies.

Treatment

Treatment typically includes corticosteroids, immunosuppressants, and physical therapy.

Practice Question – Mains GS - III

Discuss the challenges faced by India in the management and treatment of rare diseases. Discuss the steps taken by the government and suggest measures for improvement.

(150 words, 10 marks)

Katchatheevu Islands

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Why in News?

Katchatheevu, an islet near Rameswaram, Tamil Nadu, is at the center of tensions between Indian and Sri Lankan fishermen. Recent arrests by Sri Lanka have led to protests, including the boycott of an annual festival on the islet. Indian fishermen demand the resumption of fishing rights, while the government promotes alternative livelihood options. The situation highlights the unresolved India-Sri Lanka fishing dispute.

Katchatheevu Islands

About the Islands

• Katchatheevu is a small, uninhabited group of islands covering an area of 285 acres. It lies in the Palk Strait, between India and Sri Lanka.
• The islands are quite small, about 1.6 km in length and slightly over 300 m wide at their widest point.
• Geographically, Katchatheevu is situated northeast of Rameswaram, approximately 33 km from the Indian coast and about 62 km southwest of Jaffna, at the northern tip of Sri Lanka.
• Historically, Katchatheevu was part of the Madras Presidency during the British Raj and was a subject of dispute between India and Sri Lanka.
• It became a bone of contention between the two countries, especially regarding fishing boundaries, and this dispute lingered until 1974.
• As per the Indo-Sri Lankan Maritime agreement, the Indian government, under the leadership of Prime Minister Indira Gandhi, 'ceded' Katchatheevu to Sri Lanka.
• The only significant structure on the island is the St. Anthony's church, which dates back to the early 20th century. It is a Catholic shrine and attracts pilgrims from both India and Sri Lanka during its festival.

Issue behind Katchatheevu

• In the early medieval period, Katchatheevu was controlled by the Jaffna kingdom of Sri Lanka.
• In the 17th century, control of the island was passed to the Ramnad zamindar of Tamil Nadu.
• Under certain conditions, Indian fishermen were allowed access to Katchatheevu, but fishing rights were not clearly defined in the agreement.
• The Sri Lankan government's interpretation of the agreement restricts Indian fishermen's rights to activities such as resting, drying nets, and visiting the Catholic shrine without requiring a visa.

Practice Question – Prelims

Elephant Pass, sometimes seen in the news, is mentioned in the context of the affairs of which one of the following?

(a) Bangladesh

(b) India

(c) Nepal

(d) Sri Lanka

Narcotics Control Bureau (NCB)

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Why in News?

A joint operation by the Narcotics Control Bureau (NCB), the Navy, and the Gujarat Anti-Terrorism Squad resulted in the largest-ever offshore drug seizure in India. About 3,300 kg of drugs, including hashish and heroin, were intercepted from a dhow in the Indian Ocean off the Gujarat coast. The contraband, estimated at ₹1,200 crore, was being smuggled through the Chabahar port in Iran. Five individuals with suspected Pakistan links were arrested in connection with the operation.

Background

• India's International Commitments:
  • Signatory to:
  • Single Convention on Narcotic Drugs 1961
  • Conventions on Psychotropic Substances, 1971
  • United Nations Convention against Illicit Traffic in Narcotic Drugs and Psychotropic Substances, 1988
• Legal Framework:
  • Article 47 of the Constitution directs States to work towards prohibiting the use of intoxicating substances that are injurious to health, except for medicinal purposes.
  • Central Acts include:
  • Drugs and Cosmetics Act, 1940
  • The Narcotic Drugs and Psychotropic Substances Act, 1985
  • The Prevention of Illicit Traffic in Narcotic Drugs and Psychotropic Substances Act, 1988

Functions of Narcotics Control Bureau (NCB)

• Coordinates with various offices under any act in connection with the enforcement provisions of the NDPS Act, 1985.
• Carries out India's commitments under numerous international conventions and protocols.
• Provides assistance to concerned authorities in foreign countries and international organizations.
• Coordinates actions taken by other concerned authorities in matters relating to drug abuse.
• Apex coordinating agency responsible for fighting drug trafficking and the abuse of illegal substances.
• Functions under the Ministry of Home Affairs.
• Finds representation on the Economics Intelligence Council.
• Excluded from the Right to Information Act under Section 24(1) of the RTI Act 2005.

Practice Question – Prelims

Consider the following statements with reference to Narcotics Control Bureau (NCB):

1. It is the nodal drug law enforcement and intelligence agency of India responsible for fighting drug trafficking.

2. It is a statutory body.

3. It is under the administrative control of Ministry of Home Affairs.

How many statements given above is/are correct?

(a) Only one

(b) Only two

(c) All three

(d) None