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1.Rare diseases call for stepped-up R&D
The last day of February is observed as the day of rare diseases, a group of some 7,000 afflictions that mar the lives of some 300 million people around the world, or 4% of the population. There is no real estimate of rare disease patient numbers in India, since diagnosis is difficult and often absent, but there is no reason to believe that it would be lower than the global average, which itself is likely an undercount. The government has, for the first time, come out with a policy on rare diseases, a few of which can be cured while the rest call for management.
The numbers are not large; so, the cumulative expenditure on treating/managing rare diseases is not high, as a proportion of the total healthcare budget, it can be ruinously high for individual patients, especially as no insurance would cover these illnesses. Yet, the government finds it difficult to set aside the amount required, given the claims on its meagre allocation for health. The policy document suggests crowdsourcing contributions to a dedicated fund for rare diseases. This is not the ideal solution, but is a step forward. However, as Viswanath Pingali of IIM, Ahmedabad, points out, the rules need to be amended to make contributions to the proposed rare disease fund eligible to be counted as corporate social responsibility. Treatment and disease management are only one part of the rare disease challenge. Where India can make a real difference is in research. Many drugs and therapeutic procedures — whether cholesterol reduction drugs or chemotherapy — have come out of research into rare diseases. In other words, R&D related to rare diseases can yield not just treatments for those diseases but significant collateral benefits that improve healthcare in general.
Most rare diseases arise from gene abnormalities. Studying them can contribute to signal advances in synthetic biology, a frontier area of advanced manufacturing. India has the world’s largest pool of young people who can be trained to carry out the needed R&D. Policy should provide them with direction and encouragement.
2. An avoidable month of hobbled governance
The Election Commission has set the clock for elections in four states and one Union territory. This is the largest pandemic-era electoral exercise: 18.68 crore voters across 824 seats in four states and one Union territory — the first vote will be cast on March 27 and the last on April 29. While West Bengal will have its elections in eight phases, and Assam in three, Tamil Nadu, Puducherry and Kerala will hold their polls on April 6. Counting and results for all states will be on May 2.
The Model Code of Conduct kicks in with the announcement of elections. This means that the southern states are being saddled with governments that are constrained in various ways by an avoidable month. Polling begins in Assam one month from the announcement of the election schedule. So, the elections to Kerala, Tamil Nadu and Puducherry could well have been announced towards the end of March, and polls held a month later, with the results declared on May 2, along with those of Assam and West Bengal, without any disturbance to the combined electoral harmony of this phase of national politics. This would have meant that these states could avoid being deprived of a month of hobbled governance. The commission could bear this in mind while fixing its future poll schedules.
The commission is observing the Covid protocols it enforced in the Bihar elections, which is welcome. It should ensure that masks, gloves and sanitisers are available for voters at the polling booths, especially as there is a rise in the number of Covid cases and newer strains. The government could determine the feasibility of using poll turnout as an occasion for mass vaccination in these states, assuming that vaccine supplies would have gone up by then to commence universal vaccination.
3.Virtual confusion: Digital news is not social media. Govt is mistaken
On Thursday, government introduced sweeping new rules that encompass a wide spectrum of digital content. But the way in which these rules force-fit social media, streaming entertainment, and digital news portals all under one umbrella, is untenable. News content already undertakes compliance with various standalone legislations. Plus news sites follow print and TV norms, besides the extensive self-regulation done in multiple layers between journalists and editors every day. Social media by contrast has run rogue, without accountability.
Leave alone discussing these far-reaching changes with stakeholders in digital news, government has sidestepped even a cursory parliamentary scrutiny by introducing the sweeping regulatory framework as subordinate legislation. And now, at a time when news media are already battling adverse economic and legal environments, with serious charges like sedition being levelled on frivolous grounds, a whole new set of compliance measures will bring fresh costs and dangers. For example, the oversight authority set up with government officials and suo motu powers could both encourage strong-arming by the state and trolls mounting a deluge on a selected media target, to hurt it punitively.
Government’s aim to impose accountability on social media to tackle a pandemic of fake news and hatred is sound. But it’s mainstream news platforms that have offered the strongest checks on this dangerous phenomenon, by amplifying the credible facts and information. The three-tier grievance redressal mechanism proposed in the rules is only going to put constraints on this work. It is not minimum government, maximum governance and it’ll not provide benefits to society. It’s best to drop the current rules. Instead, government can use the ongoing parliamentary exercise in fleshing out a data protection legislation to meet its objectives of regulating social media content. But most importantly, news platforms must not be clubbed with social media.
4.Right to marry? Statist paternalism towards adults has limits
With same sex couples approaching Delhi high court for legal sanctity of marriage to their relationships, how long can Centre oppose the idea that has gained gradual acceptance in progressive jurisdictions? For many people, marriage is the next logical step in formalising their relationships. And thus the legal fight now after Supreme Court decriminalised homosexual relationships in 2018.
Centre’s affidavit rejected a fundamental right to same sex marriage, noting its incompatibility with the “Indian family unit concept of a husband, a wife and children, which necessarily presuppose a biological man as ‘husband’, a biological woman as ‘wife’ and the children born out of the union between the two.” The heterosexual marital union described here is a limited interpretation of family. Marriage also works as a civil contract between consenting adults and as societal signalling by the couple. When formalised through religious rituals, marriage further acquires sacramental significance.
Denying these benefits of a marital union to couples whose relationship gained legal acceptance in 2018 can be interpreted as a denial of their fundamental rights to life with dignity, equality before law, and right against discrimination by the state on grounds of gender. The legal challenge against Section 377 IPC was preceded by a long struggle to humanise the plight of homosexual persons and reverse the colonisation of the Indian mind by Victorian morality, which effaced the much older Indian tradition of acceptance of gender and sexual diversity. Centre’s affidavit won’t be the last chapter of this epic struggle.
5.The India-Pakistan thaw | HT Editorial
The sudden announcement of the Indian and Pakistani armies recommitting themselves to the frayed 2003 ceasefire agreement on the Line of Control (LoC) in Jammu and Kashmir (J&K) took many by surprise in New Delhi and Islamabad, especially as it came at a time when both countries have shown no signs of being able to agree on anything. It is also clear the decision to strictly adhere to the truce and address core concerns of both sides was not the outcome of a solitary call between the Directors General of Military Operations — such a move would have required considerable preparation and more than a single conversation. There has, therefore, been much speculation about back-channel talks, and Pakistan’s de facto national security adviser Moeed Yusuf acknowledged in an audio statement that there were “behind the scenes” contacts and more roads would open in the coming days (although Mr Yusuf later denied reports of direct contacts with his Indian counterpart).
It is not unknown for even this Indian government, which has taken one of the strongest positions on Pakistan in recent decades, to engage in secret talks with the Pakistani side. After all, National Security Adviser Ajit Doval did met his then Pakistani counterpart in Thailand in 2018, paving the way for a limited engagement that ended due to the Pulwama terror attack, Balakot strikes and, subsequently, the change in Jammu and Kashmir’s special status in 2019. The top-most echelons of Indian leadership would have signed off on a decision as significant as the one to reinforce the LoC ceasefire. For India, any reduction of tensions on the LoC will allow the security establishment space and time to devote its energies more fully to a more pressing issue – the standoff on the Line of Actual Control.