Topic 1 : Despite policy backing and funding, care for rare diseases not optimal
Context
The first National Policy on Rare Diseases was issued in March 2021, providing a comprehensive national approach to prevention and management of rare diseases.
The Policy
- The policy factors in ways to lower the exorbitant cost of treatment, and boost indigenous research.
- It 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 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.
Rare diseases
- 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.
- It affect nearly 1/5th of India’s population.
- 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.
- India currently does not have a standard definition — but the Organisation of Rare Diseases — India, has suggested that a disease is to be defined as rare if it affects 1 in 5,000 people or less.
- The Union Government in May 2022 had allocated ₹50 lakh per patient for the treatment of all rare diseases across the country.
Underutilisation of funds
- Clearly the CoEs are not compelled by the sense of urgency that patients desperately seeking avenues for funding life-saving treatment are.
- The underutilisation of allocated funds and the plight of patients who have exhausted their treatment allocations underscores the critical need for action.
- Every rare disease patient deserves timely access to life-saving treatments.
- Also, the state governments need to pitch in here through budgetary allocations specifically for the treatment of eligible rare disease patients.
- The key asks of rare diseases patient advocacy groups, among the strongest lobbies in the health care sector now, 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.
Screening for disease
- It is important to set up pre-natal scan centres in the public health set up, to take the possibility of early detection, already available in the private sector, to the larger public.
- Gynaecologists and paediatricians are more aware about rare diseases, and people have started looking at birth defects, doing gene testing etc, besides vastly improved neonatal intensive care unit services in hospitals across the country leading to earlier and more accurate detection.
- The list of rare diseases needs to be really clarified. The most common ones, which are reported periodically, should be there in the list.
- While a hospital-based National Registry for Rare Diseases has been initiated by the Indian Council for Medical Research by involving centres that are involved in diagnosis and management of rare diseases, it needs to be pushed through and actualised.
Conclusion
World Rare Diseases Day gives us a chance to reflect; despite the pace of development in the recent past, it is important to evaluate the needs of the community. It is also important to evaluate policy against implementation, to see if the goals are being achieved and target groups are benefiting.
Topic 2 : On cross-voting in Rajya Sabha elections
Context
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.
Rajya sabha elections
- 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.
Tenth Schedule
- 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 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.
Suggestions
- 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.
- Cross-voting in Rajya Sabha elections is a serious threat to democracy.
Way forward
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.
