Mains Q & A 18 January 2023
Q1. The study of uncommon diseases is hampered by its high complexity and heterogeneity. Consider the treatment and prevention of uncommon diseases when evaluating the National Policy for Rare Diseases, 2021. (250 words)
Paper & Topic: GS III Health related issues
According to the World Health Organization, a rare disease only strikes one person in a thousand. The 7,000 uncommon diseases that are known to exist affect 300 million individuals worldwide; 70 million of these people reside in India. They include inherited malignancies, autoimmune conditions, congenital deformities, Hirschsprung’s disease, Gaucher disease, cystic fibrosis, muscular dystrophies, and Lysosomal Storage Disorders, according to the Organization for Rare Diseases India (LSDs).
Problems with treating rare diseases:
The study of uncommon diseases spans a wide range of topics. Due to the regular discovery and description of novel uncommon diseases and syndromes in medical literature, the landscape of rare diseases is always changing.
The area is still in its infancy, with the exception of a few rare conditions where considerable advancements have been made.
Doctors, researchers, and decision-makers were ignorant of unusual diseases for a very long time, and until recently, there was no significant study or public health strategy that addressed the problems in the field.
Families with members who suffer from uncommon diseases may also be ignorant of the condition or find themselves unable to cure it for lack of knowledge or resources.
Only a few rare diseases are treated using orphan medications, which are prohibitively expensive and out of the price range of the average person. Using Zolgensma as an example, the price is 16 crore.
National Rare Disease Policy 2021:
The Department of Health Research, Ministry of Health & Family Welfare will establish a National Consortium as part of the Rare Diseases Policy to advance domestic research and reduce the high cost of treating rare diseases.
The price of treating rare diseases will decrease by putting more of an emphasis on local drug development and production.
In order to provide sufficient data for the definition of rare diseases and for domestic research and development pertinent to rare diseases, the strategy also takes into account the establishment of a national hospital-based register of rare diseases.
The Policy also emphasises parental counselling for children at high risk and early identification and prevention through primary and secondary health care infrastructure, including Health and Wellness Centers and District Early Intervention Centers (DEICs).
The Department of Biotechnology developed Nidan Kendras to facilitate screening.
Through the designation of 8 healthcare facilities as Centers of Excellence (CoEs) and the provision of one-time financial support of up to Rs 5 crores for the improvement of diagnostics facilities, the programme also aims to strengthen tertiary healthcare institutions for the prevention and treatment of rare illnesses.
A provision for financial assistance up to Rs. 20 lakhs under the Rastriya Arogya Nidhi Umbrella Scheme is being offered for the treatment of select rare ailments that only call for one treatment (diseases listed under Group 1 in the rare disease policy).
In order for everyone to benefit, this type of financial aid would be provided to the 40% of the population who are eligible under the Pradhan Mantri Jan Arogya Yojana, not just BPL households.
The Policy also includes a method for crowd fundraising that encourages businesses and individuals to contribute funds for the treatment of rare diseases using a reliable IT platform.
Any remaining funds may be used for research after the money donated in this way has first been used to treat all three types of rare diseases at Centers of Excellence.
Restrictions on policy:
Conditions like LSD, for which a cure is possible but prohibitively expensive, have been classified as Group 3 disorders under the National Policy on Rare Disorders.
However, no funding has been provided for medicines that the Indian Drugs Controller General has already approved in order to meet both short- and long-term therapeutic demands.
Experts estimate that the annual costs associated with aiding people who have already gotten a diagnosis could reach Rs. 80–100 crore.
The Center’s annual cost share will be cut in half if it can expand the cost-sharing arrangements it has made with Kerala, Tamil Nadu, and Karnataka to include more States.
Even when the policy is in place, the Center is still able to set aside a sizable sum of money to spend for medicines that save lives.
Additionally, it will complete a mission that has already begun by reaffirming its commitment to ensuring the welfare of every Indian.
A welfare state must provide for each and every citizen. The welfare of everyone must be protected, especially that of the defenceless, whether they reach a critical mass or not.
Q2. AUKUS is the product of a partnership between like-minded regional countries that will strengthen the integration of their defence forces in the Indo-Pacific and bring regional policies closer together. Comment. (250 words)
Paper & Topic: GS III International Relations:
The UK, US, and Australia have formed an unheard-of security alliance in the Asia-Pacific area in what is perceived as a move against China. Its names are the AUKUS Accord and AUKUS Alliance. The Indo-Pacific region is changing quickly, as evidenced by a historic security deal between the US, the UK, and Australia that will allow Australia to build nuclear-powered submarines for the first time using US technology.
AUKUS Pact synopsis:
According to the AUKUS alliance, the three nations have agreed to promoting greater integration of supply chains, industrial bases, and scientific and technological bases relevant to security and defence.
Under the first major AUKUS operation, Australia would build a fleet of nuclear-powered submarines with support from the US and the UK, a capacity intended to promote stability in the Indo-Pacific region.
In recent years, Beijing has been accused of inciting conflict in disputed areas like the South China Sea.
Western countries have expressed worry about China’s infrastructure spending on Pacific islands in addition to criticising China’s economic sanctions against nations like Australia.
Australia will join a select group of countries, including the US, UK, France, China, India, and Russia, that operate nuclear-powered submarines.
In addition, after the UK, it will be the only nation with whom the US exchanges submarine technology.
A framework for regional security in the Indo-Pacific and beyond is the AUKUS Pact:
Nuclear technology transfer to a non-nuclear state: The US and the UK are willing to sell nuclear technology to a nation without nuclear power, which is a remarkable move.
Worries over regional security have been the main driving force behind the “Aukus pact,” which is being heralded as Canberra’s largest defence cooperation in decades and encompasses artificial intelligence, cyber, and other cutting-edge defence technology.
Continent of Indo-Pacific security According to the pact, the three nations have a “historic opportunity to defend shared values and advance security and prosperity in the Indo-Pacific region, alongside like-minded allies and partners.
Washington and its Pacific allies may need a new generation of nuclear-powered submarines to combat China’s military buildup. This is due to their ability to counter China’s aggressive policies.
Additionally, it would enable better underwater communication between the three nations across the Pacific.
After the disastrous withdrawal of American soldiers from Afghanistan, there were significant doubts in the Indo-Pacific about the American government’s commitment to the region at the time this significant deal was revealed.
Britain aspires to take on a larger role in the Indo-Pacific area after leaving the European Union. Brexit and the UK’s projected influence on the world.
The ambition of the Boris Johnson administration to promote the idea of a “Global Britain” as the core thesis of British foreign policy after Brexit is a natural consequence to more involvement in the Indo-Pacific with like-minded states.
The UK’s brand-new aircraft carrier, Queen Elizabeth, travelled through the South China Sea in July despite Beijing’s objections.
India’s perspective The most recent changes have been mostly good from an Indian perspective. As we turn our focus to the Quad summit, it is clear that like-minded regional countries are attempting to forge a cooperation that will lead to a greater integration of the defence forces and a closer alignment of regional policies and initiatives.
In light of India’s announced plan to buy new nuclear-powered submarines, it will amount to a considerable enhancement in the Quad’s underwater and anti-submarine warfare capabilities.
The lesson from Aukus is that other regional players are keen to establish new guidelines for interaction with Beijing, even though Chinese actions may have precipitated the current unrest in the Indo-Pacific. They can successfully counter Chinese aggression and their “middle kingdom” plan while working along with the Quad.
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