Daily Current Affairs

Despite policy backing and funding, care for rare diseases not optimal (GS Paper 2, Health)

Context:

• World Rare Diseases Day is observed on February 29.

 

National Policy on Rare Diseases:

• The first National Policy on Rare Diseases was issued in March 2021, providing a comprehensive national approach to prevention and management of rare diseases.
• It also factors in ways to lower the exorbitant cost of treatment, and boost indigenous research.
• The policy also envisages the creation of a national hospital based registry of rare diseases, an intervention as crucial as funding for treatment itself, as it will provide rich epidemiological data to define the extent of the problem in India and decide optimal funding for research in rare diseases too.
• The Rare Diseases Policy also focuses on creation of Nidan Kendras for early screening and prevention, as well as plans to strengthen extant secondary and tertiary health facilities at Centres of Excellence.

 

What is a rare disease?

• In India, it is estimated that there are between 7,000 - 8,000 rare diseases, but less than 5% have therapies available to treat them. But, taken as a whole, rare diseases affect nearly 1/5th of India’s population, educated extrapolations indicate.
• A rare disease is one that is loosely defined as occurring infrequently in the population, and as such, what constitutes a rare disease varies from nation to nation.
• The World Health Organisation defines rare disease as an often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1,000 population.

 

Concerns:

• The landscape of rare diseases is constantly changing, as there are new rare diseases and conditions being identified and reported regularly in medical literature. Apart from a few rare diseases, where significant progress has been made, the field is still at a nascent stage.
• Notwithstanding the rather significant developments, and a number of patients benefiting, the progress on the field still is at an infantile stage.
• The Union Government in May 2022 had allocated ₹50 lakh per patient for the treatment of all rare diseases across the country.

 

Underutilization of funds:

• Ministry of Health and Family Welfare disbursed to all the Centres of Excellence a sum of approximatey ₹109 crore in the last three years. However, the total funds utilised so far is only approximately ₹53 crore.
• A whopping 51.3% of the total funds allocated are still sitting pretty, while patients are losing lives with no access to treatment.
• There are now 12 Centres of Excellence, and of the 11 centres that data is available for, only three CoEs have utilised over 90% of the funds allotted to them, and one Centre in the honourable mention, late 80 percentile mark.
• Clearly the CoEs are not compelled by the sense of urgency that patients desperately seeking avenues for funding life-saving treatment are.

 

Sustainable funding:

• The key asks of rare diseases patient advocacy groups are to build urgency on the part of the CoEs to start treatment of all eligible patients and build a continuum of care with sustainable funding support for conditions that necessitate long term care and treatment, classified by the National Policy as Group 3 diseases.
• There are, reportedly, 10 patients, children, from across the country who have already exhausted their ₹50 lakh allotment, and are currently running from pillar to post seeking continuation of their treatment. These patients need sustainable funding and continued treatment support to survive and lead normal lives.

 

Is NATO membership in the cards for Ukraine?

(GS Paper 2, International Organisation)

Why in news?

• Western powers joined Ukraine recentky to mark two years of Russian aggression on its territory, as concerns grow that the conflict could spread into Europe.
• On the other hand, Jens Stoltenberg, secretary-general of the North Atlantic Treaty Organization (NATO), sounded emphatic on the inevitability of Ukraine joining the military bloc.
• However, that question appears unlikely to elicit consensus among member states any time soon.

 

What was the reason for the Russian invasion?

• In 2008, NATO leaders declared their intention to admit Georgia and Ukraine to the bloc, although no timelines were indicated.
• The step must have been provocation enough for Russian President Vladimir Putin, who has been steadfast in his opposition to NATO expansion, especially into the heart of the former United Soviet Socialist Republic (USSR).
• Within months, President Putin sent tanks rolling into Tbilisi. In 2014, Russia annexed Ukraine’s Crimean peninsula and in February 2022 launched a full-scale war on the nation.
• If Ukraine is admitted now it would automatically kickstart NATO’s Article 5 mutual defence provision, which stipulates that an attack on one member would be construed as an attack against all. Indeed, nothing less would reassure Ukraine, which gave up its nuclear arsenal in exchange for security guarantees by the U.S. and the U.K.

 

What is the status of the war now?

• The most immediate concern is the severe depletion in Ukraine’s artillery ammunition on the battlefield, which poses a challenge to hold back Russian troops along a 1,500 km frontline.
• The current shortfall, which has already increased Ukrainian casualties, allows it to fire barely a third of the absolute minimum of some 6,000 rounds of artillery shells it needs daily.
• On the other hand, Russian land forces have sustained an estimated 2,00,000 deaths and injuries since the onset of the conflict.
• Russia achieved a breakthrough when Ukraine withdrew from the strategic city of Avdiivka, ascribed by the country’s President Volodymyr Zelenskyy to acute shortages in Kyiv’s artillery firepower. The latter’s withdrawal from Avdiivka is reportedly the first major victory for Russian forces since the capture of Bakhmut city.

 

What has been the U.S.’s role so far?

• While the U.S. has been the largest arms contributor to the war effort, a $60 billion aid bill to Ukraine has been stalled in Congress.
• The House of Representatives have refused to approve the financial package, caving into former President Donald Trump’s pressure tactics.
• Hardline Republican voices have grown louder in arguing that it is about time that Europe took full responsibility for its own security and worked as an equal partner with the U.S.

 

What about the EU?

• The 27-nation bloc recently overcame Hungarian hurdles to finance a €5 billion deal over four years to the Ukrainian economy.
• But governments are now squabbling over ways to top-up the €12 billion European Peace Facility (EPF) they had established to support Ukraine’s war effort, funded by national contributions outside the bloc’s common budget.
• Germany insists that the value of the weapons it supplies bilaterally should be factored into contributions to the common pool, while others feel that this would shrink the fund’s volume. Moreover, some countries want that expenditure from the EPF to support the bloc’s defence industry.

 

What is the road ahead?

• Ukraine’s full NATO membership is not on the table yet. For the time being, NATO has sought to assuage Ukraine’s concerns by formalising current mechanisms of cooperation, which would empower it to call emergency meetings and ensure greater participation.
• President Putin’s likely victory in a sham election in March and Mr. Trump’s possible return to power later in 2024 presents a predicament hard to contemplate for Ukraine.

 

On cross voting in Rajya Sabha elections

(GS Paper 2, Polity and Constitution)

Why in news?

• The Rajya Sabha elections in the States of Uttar Pradesh, Himachal Pradesh and Karnataka witnessed cross-voting by MLAs belonging to different parties.
• This has once again raised concerns about the sanctity of the election process.

How are Rajya Sabha elections held?

• As per Article 80 of the Constitution, representatives of each State to the Rajya Sabha are elected indirectly by the elected members of their Legislative Assembly.
• The polls for Rajya Sabha will be required only if the number of candidates exceed the number of vacancies.
• In fact, till 1998, the outcome of Rajya Sabha elections were usually a foregone conclusion. The candidates nominated by various parties, according to their strength in the Assembly, used to be elected unopposed. However, the June 1998 Rajya Sabha elections in Maharashtra witnessed cross-voting that resulted in the loss of a Congress party candidate.
• In order to rein in the MLAs from such cross-voting, an amendment to the Representation of the People Act, 1951 was carried out in 2003.
• Section 59 of the Act was amended to provide that the voting in elections to Rajya Sabha shall be through an open ballot.
• The MLAs of political parties are required to show their ballot paper to the authorised agent of their Party. Not showing the ballot paper to the authorised agent or showing it to anyone else will disqualify the vote.
• Independent MLAs are barred from showing their ballots to anyone.

 

What does the Tenth Schedule state?

• The 52nd constitutional amendment introduced the ‘anti-defection’ law through the Tenth Schedule in 1985.
• This Schedule provides that a member of a House of Parliament or State legislature who voluntarily gives up the membership of their political party or votes against the instructions of their party in a House are liable for disqualification from such House. This instruction with respect to voting is issued by the ‘whip’ of a party.
• However, the elections to Rajya Sabha are not treated as a proceeding within the Legislative Assembly.
• The Election Commission, drawing reference to Supreme Court judgments, had issued a clarification in July 2017.
• It specified that the provisions of the Tenth Schedule, with respect to voting against the instruction of the party, will not be applicable for a Rajya Sabha election. Furthermore, political parties cannot issue any ‘whip’ to its members for such elections.

 

What have the courts ruled?

• The Supreme Court in Kuldip Nayar versus Union of India (2006), upheld the system of open ballot for Rajya Sabha elections. It reasoned that if secrecy becomes a source for corruption, then transparency has the capacity to remove it.
• However, in the same case the court held that an elected MLA of a political party would not face disqualification under the Tenth Schedule for voting against their party candidate. He/she may at the most attract disciplinary action from their political party.
• The Supreme Court has also held in Ravi S. Naik and Sanjay Bandekar versus Union of India (1994), that voluntarily giving up membership under the Tenth Schedule is not synonymous with only formally resigning from the party to which the member belongs.
• The conduct of a member both inside and outside the house can be looked into to infer if it qualifies as voluntarily giving up membership.
• The six Congress MLAs, who cross-voted in Himachal Pradesh, have been disqualified under the Tenth Schedule for defying the party whip and being absent during the passage of the Budget in the Assembly.

 

Way Forward:

• It is to uphold the higher principle of free and fair elections and its purity that the court upheld the system of open ballot to Rajya Sabha elections. However, the instances of cross-voting in the last decade have defeated the intent behind this procedure.
• It would be wishful thinking to expect any further amendments to strengthen the Constitution or laws against such voting practices since ruling parties’ benefit from such unprincipled tactics.
• The Supreme Court nevertheless in the case relating to the Chandigarh Mayoral election had observed that it will not allow democracy to be murdered. Cross-voting in Rajya Sabha elections is a serious threat to democracy.
• The court may therefore initiate a suo moto Public Interest Litigation in this matter or take it up when the order by the Himachal Pradesh Speaker disqualifying the six MLAs eventually comes up before it on appeal. It may, in that process, review its own order in the Kuldip Nayar case in light of its judgment in the Ravi Naik case.
• Voting by an MLA against his/her political party in a Rajya Sabha election may well be construed as a strong reason to infer that the member had voluntarily given up membership of such party. If the court decides so, this would be a valid ground for disqualification under the Tenth Schedule. It would hopefully act as a deterrent against such cross-voting in the future.