Health policy on rare diseases
The Delhi High Court has asked the Centre to finalise and notify the National Health Policy for Rare Diseases by March 31.
What is a rare disease?
A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.
Most rare diseases are genetic, and are present throughout a person’s entire life, even if symptoms do not immediately appear.
The most common rare diseases recorded in India are:
Haemophilia, Thalassemia, sickle-cell anaemia and primary immuno deficiency in children, auto-immune diseases, Lysosomal storage disorders such as Pompe disease, Hirschsprung disease, Gaucher’s disease, Cystic Fibrosis, Hemangiomas and certain forms of muscular dystrophies.
Concerns and challenges:
They pose a significant challenge to health care systems because of the difficulty in collecting epidemiological data, which in turn impedes the process of arriving at a disease burden, calculating cost estimations and making correct and timely diagnoses, among other problems.
Many cases of rare diseases may be serious, chronic and life-threatening. In some cases, the affected individuals, mostly children, may also suffer from some form of a handicap.
As per the 2017 report, over 50 per cent of new cases are reported in children and these diseases are responsible for 35 per cent of deaths in those below the age of one, 10 per cent of deaths between the ages of one and five, and 12 per cent between five and 15.
Efforts by India towards this:
The Union Ministry of Health and Family Welfare has published a national policy for the treatment of 450 ‘rare diseases’.
The policy intends to kickstart a registry of rare diseases, which will be maintained by the Indian Council of Medical Research (ICMR).
Under the policy, there are three categories of rare diseases — requiring one-time curative treatment, diseases that require long-term treatment but where the cost is low, and those needing long-term treatments with high cost. Some of the diseases in the first category include osteopetrosis and immune deficiency disorders, among others.
Financial assistance: As per the policy, the assistance of Rs 15 lakh will be provided to patients suffering from rare diseases that require a one-time curative treatment under the Rashtriya Arogya Nidhi scheme. The treatment will be limited to the beneficiaries of Pradhan Mantri Jan Arogya Yojana.
Justification for state’s intervention:
State has responsibility for providing affordable, accessible and reliable health-care services to every citizen.
Constitution also mentions importance of health-care services under articles like 21, 38 and 47 and thus state cannot evade this responsibility under the pretext of non-justifiability of articles.
Even if pharmaceutical companies are incentivized to develop drugs to treat rare diseases, pharmaceutical companies remain beholden to the laws of economics and, given the low demand for orphan drugs, price these drugs as high as they choose to. Hence there has to be regulation of the government in restricting the exorbitant prices of the drugs.
Indus water panel holds meeting
After a gap of more than two and half years Indian and Pakistani delegations have begun the 116th Meeting of the Permanent Indus Commission.
The meeting is being viewed as part of the broader process of normalisation of bilateral ties between the two neighbours.
About the Indus Water Treaty:
It is a Water-Distribution Treaty, signed in Karachi on 1960, between India (Pm Jawaharlal Nehru) and Pakistan (President Ayub Khan), brokered by the World Bank.
Under the treaty, India has control over water flowing in the eastern rivers– Beas, Ravi and Sutlej.
Pakistan has control over the western rivers– Indus, Chenab and Jhelum.
As per the treaty, the water commissioners of Pakistan and India are required to meet twice a year and arrange technical visits to projects’ sites and critical river head works.
Both the sides share details of the water flow and the quantum of water being used under the treaty.
Permanent Indus Commission:
The Permanent Indus Commission is a bilateral commission of officials from India and Pakistan, created to implement and manage goals of the Indus Waters Treaty, 1960.
The Commission according to the treaty must meet regularly at least once a year, alternately in India and Pakistan.
The functions of the Commission are:
UN Human Rights Council
India has abstained from a crucial vote on Sri Lanka’s rights record at the United Nations Human Rights Council in Geneva.
The resolution on ‘Promoting reconciliation, accountability and human rights in Sri Lanka’ was, however, adopted after 22 states of the 47-member Council voted in its favour.
About the Resolution:
It gives UN human rights chief Michelle Bachelet the mandate to collect and preserve evidence of crimes related to Sri Lanka’s civil war that ended in 2009 with the defeat of Tamil Tiger rebels.
The resolution also contended the human rights situation has deteriorated under the Rajapaksa administration and that rights defenders and ethnic and religious minorities are facing problems.
UNHRC was reconstituted from its predecessor organisation, the UN Commission on Human Rights to help overcome the “credibility deficit” of the previous organisation.
Headquartered in Geneva, Switzerland.
The UNHRC has 47 members serving at any time with elections held to fill up seats every year, based on allocations to regions across the world to ensure geographical representation.
Each elected member serves for a term of three years.
Countries are disallowed from occupying a seat for more than two consecutive terms.
The UNHRC passes non-binding resolutions on human rights issues through a periodic review of all 193 UN member states called the Universal Periodic Review (UPR).
It oversees expert investigation of violations in specific countries (Special Procedures).
Challenges and Need for reforms:
In the run-up to the polls in Assam, the name of Ahom general Lachit Borphukan, credited with defeating the Mughals in the Battle of Saraighat (1671), has been frequently invoked.
Who was Lachit Borphukan?
He was a commander in the Ahom kingdom.
Known for his leadership in the 1671 Battle of Saraighat that thwarted a drawn-out attempt by Mughal forces under the command of Ramsingh I to take over Ahom kingdom.
The battle of Saraighat was fought on the banks of the Brahmaputra in Guwahati.
The National Defence Academy (NDA), ever since 1999 has been conferring the best passing out cadet with the Lachit Borphukan gold medal.
During the last phase of the Battle of Saraighat, when the Mughals attacked the Assamese forces through the river in Saraighat, many Assamese soldiers began losing their will to fight. It was Lachit’s clarion call to all the soldiers that made them fight till their last breath, ultimately resulting in the defeat of the Mughals.