Are some of the most common rare diseases recorded in India.

About Thalassemia:

Ø  Thalassemia is a genetic blood condition in which the body generates insufficient haemoglobin. Haemoglobin is a protein molecule found in red blood cells that transports oxygen. Anemia is caused by the severe loss of red blood cells caused by this illness.

Ø  Anaemia is a condition in which the number of red blood cells or haemoglobin is lower than usual.

Ø  It is a hereditary disorder that is caused mostly by faulty haemoglobin production. It is passed down by one of the parents who is a carrier of the disease due to a genetic mutation or deletion of specific critical gene segments.

Ø  Parents are usually asymptomatic as carriers and there is a 25 per cent chance of passing it on to their children.

Ø  Acute thalassemia may require regular blood transfusions, whereas mild thalassemia does not require therapy.

Effects:

Ø  It affects all organs of the body. It starts with the bone marrow being unable to produce adequate haemoglobin.

Ø  The liver and spleen also come under pressure and overworked.

Ø  Sometimes thalassemics experience facial bone deformities.

Importance of preventive screening and awareness:

Ø  A person living with thalassemia has a life-long struggle.

Ø  The cost of maintaining a child with Thalassemia Major is almost Rs 2 lakh per year.

Ø  The rate of picking up a Thalassemia trait is 3-4 per cent. This means for every 100 people screened, there would be at least three to four people detected with the trait.

Ø  Hence preventive screening is an important measure.

Ø  Testing people for Thalassemia carrier status in society is very important to prevent the birth of a single Thalassemic child.

According to the Assam government, an expert committee would be formed to examine the issue of practice of polygamy and will ban the practice through “legislative action”.

 Practice of Polygamy in India -

Ø  Polygamy is the practice of having more than one married spouse (wife or husband).

Ø  Traditionally, polygamy - mainly the situation of a man having more than one wife – was practised widely in India.

Prevalence in India —

Ø  According to the National Family Health Survey-5 (2019-20), polygamy was 2.1% among Christians, 1.9% among Muslims, 1.3% among Hindus, and 1.6% among other religious groups.

Ø  The highest prevalence of polygynous marriages (marriage in which two or more women share a husband) was in the Northeastern states with tribal populations.

Ø  Laws governing the practice — The issue is governed both by personal laws and the Indian Penal Code (IPC).

The Personal Laws -

Ø  The Special Marriage Act 1954 requires that at the time of marriage neither party has a spouse living.

Ø  The Hindu Marriage Act 1955 outlawed the practice of a man having more than one wife.

Ø  However, despite bigamy being an offence, the child born from the bigamous marriage would acquire the same rights as a child from the first marriage under the law.

Ø  Buddhists, Jains, and Sikhs are also included under the Hindu Marriage Code.

Ø  The Parsi Marriage and Divorce Act 1936 had already outlawed bigamy.

Ø  Marriage in Islam is governed by the Shariat Act 1937, which allows a Muslim man to have four wives.

Ø  To benefit from the Muslim personal law, many men from other religions would convert to Islam to have a second wife.

Ø  However, the Supreme Court (SC) held that religious conversion for the sole purpose of committing bigamy is unconstitutional.

Ø  This position was subsequently reiterated in the 2000 judgement in Lily Thomas Union of India.

The Indian Penal Code (IPC) -

Ø  IPC Section 494 (“Marrying again during lifetime of husband or wife”) penalises bigamy or polygamy with imprisonment up to 7 years and fine.

This provision does not apply —

Ø  To a marriage which has been declared void by a court.

Ø  If a spouse has been “continually absent” for the “space of seven years”.

Ø  For adulterous relationships that do not qualify as valid marriages under the law.

Ø  Section 495 of the IPC protects the rights of the second wife in case of a bigamous marriage.

Ø  Whoever commits the offence (under Section 494) and has concealed the fact of the former marriage from the person with whom the subsequent marriage is contracted, shall be punished with imprisonment up to 10 years and fine.

Ø  Procedure of filing a complaint -

Ø  Generally, the first wife files a complaint that her husband has remarried.

Ø  The court will have to look into whether the husband has entered into a legally valid second marriage.

Ø  The SC reiterated the legal position that the standard of proof must be of marriage performed as per customs.

Exception to the Bigamy Law for Hindus -

Goa follows its own code for personal laws. So, a Hindu man in the state has the right to bigamy under specific circumstances mentioned in the Codes of Usages and Customs of Gentile Hindus of Goa.

These circumstances include a case where the wife fails to conceive by the age of 25 or if she fails to deliver a male child by the age of 30.

However, as per the Goa government, the provision for Hindus is virtually “redundant” and no one has been given the benefit of it since 1910.

A five-judge constitutional bench of the Supreme Court held that the Delhi Govt will have legislative and executive control over administrative services in the National Capital Territory of Delhi (NCTD) except with regard to public order, police and land.

Ø  A five-judge bench of the Supreme Court has ruled unanimously in favour of the Delhi government on the issue of who controls the bureaucracy in the national capital. Earlier, it was the Lieutenant-Governor, Chief Secretary and the Secretary of the Services Department who took a call on these issues.

Ø  The Court held that the legislature has control over bureaucrats in administration of services, except in areas outside the legislative powers of the National Capital Territory (NCT).

Ø  According to the Supreme Court, the Delhi government, much like other States, represents the

Ø  representative form of government and any further expansion of the Union's power will be contrary to the Constitutional scheme.

Ø  The Court pointed out that if officers stop reporting to ministers or do not follow their instructions, the principle of collective responsibility will be affected.

Ø  Limitations –

Ø  However, the Court added that control over services would not extend to entries related to public order, police and land.

Ø  Also, the decision on which IAS officer gets posted to the national capital — and for how long — will continue to be the Centre’s prerogative.

Ø  Also, the Central government will continue to, appoint the Chief Secretary of Delhi, with consultations with the Chief Minister which, as per tradition, is more or less a formality.

Background -

Ø  A five-judge Constitution Bench of the Supreme Court was hearing the dispute between the Delhi government and the Central government.

Ø  The dispute was over matters pertaining to control over the transfers and the overall functioning of administrative services in the National Capital Territory (NCT) of Delhi.

Ø  The administrative services include appointments and transfers, in the national capital.

What gave rise to this dispute?

Ø  Article 239 AA was inserted in the Constitution by the 69th Constitutional Amendment Act, 1991. Based on the recommendations of S Balakrishnan Committee, it gave special status to Delhi..

Ø  It says that the National Capital Territory (NCT) of Delhi will have an Administrator and a Legislative Assembly.

Ø  The Legislative Assembly “shall have power to make laws for the whole or any part of the NCT w.r.t. any of the matters in the State List or Concurrent List in so far as any such matter is applicable to Union territories”.

Ø  However, the legislative assembly of Delhi cannot legislate on the following three subjects – Police, Public Order, and Land.

Ø  However, in the past few years, governance in the NCT has often been a subject of conflict between the Delhi government and the L-G.

Control over Administrative Services -

Ø  In 2019, a two-judge bench of the SC delivered a split verdict on the aspect of who controls administrative services in Delhi.

Ø  The two-judge bench had recommended that a three-judge bench be set up to decide the issue of control of administrative services.

Ø  Further, in May 2022, a three-judge Bench had referred this case to a larger Bench on the Central government’s plea.

Ø  The three-judge Bench had decided that the question of control over administrative services required “further examination”.

Central and State Government’s Arguments -

Ø  The Central Government has consistently maintained that because Delhi is the national capital and the face of the country, it must have control over administrative services, which include appointments and transfers.

Ø  On the other hand, the Delhi government has argued that in the interest of federalism, the elected representatives must have power over transfers and postings. The Delhi government had also contended that the recent amendments to the Government of National Capital Territory of Delhi (Amendment) Act, 2021, violate the doctrine of basic structure of the Constitution.

What were the legal issues before the SC?

There were two legal issues before the court –

Ø  The first arises from a reference made by a two-judge Bench in February 2019. While deciding on the distribution of powers between the Delhi government and Centre, left the question of who will have control over the administrative services for consideration by a larger Bench.

Ø  Second issue is the Government of National Capital Territory of Delhi (Amendment) Act 2021, passed by the Parliament.

Ø  The Act provided that the term “government” referred to in any law made by the Legislative Assembly of Delhi will imply the Lieutenant Governor (L-G).

Ø  However, the Delhi government has challenged the constitutional validity of the Act.

What is a Constitution Bench?

Ø  Article 145(3) deals with the setting up of a Constitution Bench of the Supreme Court comprising at least five judges “for the purpose of deciding any case involving a substantial question of law as to the interpretation” of the Constitution.

Ø  This is the second time that a constitutional bench has been set up to decide on issues between the Delhi government and Delhi’s Lieutenant Governor — the Centre’s representative in the capital — in the past four years.

The collaboration between the Ministry of AYUSH and the ICMR is a significant step in the evidence-based approach of validating medical interventions. AYUSH systems of medicine have been used in India for centuries, but they lack scientific validation. This collaboration will help to overcome this major obstacle and provide scientific evidence for the effectiveness of AYUSH systems of medicine.

What are the areas of focus for the collaboration?

Ø  The collaboration will focus on conducting quality human clinical trials to generate evidence on the benefits of using ayurveda along with modern medicine (evidence-based medicine) in treating certain disease conditions of national importance. The areas of focus will be decided by an expert committee.

What are the benefits of this collaboration?

Ø  The collaboration will have several benefits, including -

Ø  Providing scientific evidence for the effectiveness of AYUSH systems of medicine

Ø  Improving the quality of care provided to patients

Ø  Reducing the cost of healthcare

Ø  Promoting the use of AYUSH systems of medicine in India and around the world

What are the challenges that the collaboration faces?

Ø  The collaboration faces several challenges, including -

Ø  The need to overcome the lack of scientific evidence for the effectiveness of AYUSH systems of medicine.

Ø  The need to ensure that the clinical trials are conducted to high standards.

Ø  The need to ensure that the results of the clinical trials are disseminated to the public.

Conclusion -

The collaboration is a promising step forward in the evidence-based approach of validating medical interventions. The collaboration has the potential to improve the quality of care provided to patients and to reduce the cost of healthcare. The collaboration is also expected to promote the use of AYUSH systems of medicine in India and around the world.