Organization of Rare Diseases India (ORDI) recently presented an enthralling session on Rare Diseases on NewsX. There were 4 power-packed panels of experts that joined in the session that was divided into 4 segments covering various aspects concerning the topic. The four segments were:
- Rare Diseases: The Untold & Unheard Saga
- Rare Diseases: The Indian Scenario
- RaceFor7- Walk/ Run/ Ride on 28th Feb
- Rare Diseases: Hopes from the government
‘Rare Diseases: The Untold & Unheard Saga’
Dr Meenakshi Bhatt, Consultant, Clinical Genetics, CHG, Bengaluru kickstarted the first segment by enlightening the viewers on Rare Diseases. Dr Bhatt said, “Rare diseases, as the name suggests are the diseases that happen very infrequently in the population. In countries other than ours, there is a definition, sometimes it is defined in certain countries as something that happens less than once in a population of 2 lakhs. In some other countries, there is a definition that 1 in 2,500 or less of the population is affected by a disease.”
“In our own country, we do not have an accepted definition but I think once we are settled on a definition, it should be 1 in 5,000 people who are affected by a particular disease. Collectively, it has a huge impact because of nearly 7,000 Rare Diseases and we estimate that there must be at least 70 million people affected by it in India with a collection of these diseases. What does it do to the people? It affects many systems of the body and sometimes, one individual that’s affected with the Rare Disease can have many parts of their body including their intelligence affected. So, it’s very important that we recognize it early so that we can do something about it,” said Dr Meenakshi.
This segment was also joined by Prasanna Shirol, Co-founder & Executive Director, ORDI, Sangeeta Barde, Co-founder Director, ORDI, Lalith S, Director, ORDI & father of kids with Sanfilippo syndrome, Arouba Kabir, Counselor & Mental Health therapist, Dr Sujatha Jagdeesh, Head of Clinical Genetics, Mediscan, Chennai, Dr Ann Agnes Mathew, Pediatric Neurologist, Baptist Hospital, Bangalore, Dr Shubha Phadke, Professor & HOD, Medical Genetics, SGPGI.
Rare Diseases: The Indian Scenario
Giving an introduction of ORDI, Prasanna Shirol, Co-founder & Executive Director, ORDI said in his inaugural address, “ORDI is an umbrella organization which represents 7,000 plus Rare Diseases. Basically, we work in the area of advocacy, awareness and patient support.”
Mr Shirol’s quest to finding answers to multiple questions in the area of Rare Diseases led him to find the organization. He personally struggled through his life as his 22-year-old daughter is India’s first Pompe patient which is a rare genetic and neuromuscular disease.
Joining in the conversation, Sangeeta Barde, Co-founder Director, ORDI said, “We really came to a conclusion that there is no organization who can look at this in the most holistic manner. So, if one has to really work in the area of Rare Diseases then how can it be most holistic when it comes to addressing majority of these challenges that people encounter. So, that was the reason for the birth of ORDI and the whole mission is therefore around representing the Rare Diseases here in India. It’s not about one disease, it’s about 7,000 diseases that we are talking about. Some of them are not even identified properly, their names are unavailable, patients are unidentified.”
Other contributors of this segment of discussion were Dr Sumita Danda, Professor & Head, Department of Clinical Genetics, CMC, Vellore, T.S. Singh Deo, Health Minister, Chhattisgarh, Ashutosh, parent of a child of IEM, Samir Sethi, President at Indian Rett Syndrome Foundation, Dr Sarthak Kamath, MD, Psychiatry and is living with DMD, Vaishali Pai, Occupational Therapist & Founder, Tamahar Trust, Bengaluru, Manjeet Singh, President, LSDSS and he also lost his child to MPS, Dr Ratna Puri, Professor and Chairperson, Institute of Medical Genetics, Sri Ganga Ram Hospital, Dr Sanjeeva G.N., Associate Professor, Pediatrics, IGICH, Bangalore, Anil Raina, General Manager, Sanofi Genzyme, Gitanjali Sehgal, Co-founder, FSMA and is an aunt to an SMA girl and Sunila Thatte, Vice President & Head- R&D Solutions India at IQVIA.
Segment 3: RaceFor7- Walk/ Run/ Ride on 28th Feb
Racefor7 is a yearly event that ORDI conducts for the past 6 years. It symbolically represents the 7,000 rare diseases with 7,000 people running for 7 kilometres. Prasanna Shirol, Co-founder & Executive Director, ORDI said that it is a mass awareness run/ walk/ ride. He added that it is unique and largest such program in the world where so many people join to create awareness who are unaffected for causes like Rare Diseases. This year, this event will be held virtually tomorrow, to register, go to registration.racefor7.com.
Segment 3 panellists were Prasanna Shirol, Co-founder & Executive Director, ORDI, Sangeeta Barde, Co-founder Director, ORDI, Dr Meenakshi Bhatt, Consultant, Clinical Genetics, CHG, Bengaluru, Arouba Kabir, Counselor & Mental Health therapist, Sirisha, OI Warrior, President awardee, Anand Shah, Trustee of PPMD India, Uttam Sahoo, teacher & parent of Progeria child Aditya from Uttarakhand, Dr Suresh Hanagawadi, President, Karnataka Hemophilia Society & Professor of Pathology, JMM Medical College, Davangere, Dr Prakash Gambhir, Chief Medical Scientist, Lifecell & Fetomed and Sunila Thatte, Vice President & Head- R&D Solutions India at IQVIA.
Segment 4: Rare Diseases: Hopes from the government
In the last segment of the session on Rare Diseases, the panellists shared the challenges that the government perhaps needs to take account of. Taking the same conversation ahead, Dr Ratna Puri, Professor and Chairperson, Institute of Medical Genetics, Sri Ganga Ram Hospital said, “Being a doctor who has been working half lifetime with patients with Rare Diseases, I think we deal with a very large population and the priorities from the health administration side are probably different. We see our priorities as the most vital, I do agree with the parent community, they are vital because every child has a right to life but we are moving ahead and I hope that with all this, with the noise that is being created, with the platforms that are coming forward to take the voice and the importance of treating children with rare disorders, we are all waiting for a good Rare Disease policy.”
The power-packed panel that joined this segment included Prasanna Shirol, Co-founder & Executive Director, ORDI, Sangeeta Barde, Co-founder Director, ORDI, Dr Meenakshi Bhatt, Consultant, Clinical Genetics, CHG, Bengaluru, Dr Ratna Puri, Professor and Chairperson, Institute of Medical Genetics, Sri Ganga Ram Hospital, Prasanna Shirol, Co-founder & Executive Director, ORDI, Gitanjali Sehgal, Co-founder, FSMA and is an aunt to an SMA girl, Manjeet Singh, President, LSDSS and he also lost his child to MPS, Samir Sethi, President at Indian Rett Syndrome Foundation, Dr Sanjeeva G.N., Associate Professor, Pediatrics, IGICH, Bangalore, Anil Raina, General Manager, Sanofi Genzyme, Sunila Thatte, Vice President & Head- R&D Solutions India at IQVIA, Dr Ann Agnes Mathew, Pediatric Neurologist, Baptist Hospital, Bangalore and Vaishali Pai, Occupational Therapist & Founder, Tamahar Trust, Bengaluru.
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There’s only one earth and we should stop abusing her
Conscious choices made for personal health have a direct effect on the health of our planet. The World Earth Day provides the opportunity to realign our choices and rediscover our roots.
Renowned humanitarian Gurudev Sri Sri Ravi Shankar, the founder of the Art of Living Foundation, says, “Health is our true wealth. A healthy body, mind and spirit, when aligned, allow us to live life to its fullest capacity.” The question is: how do we fulfil a renewed and revitalised investment in our health?
We can start by trying to align our physical health, mental health and spiritual health. The food we choose to consume, how we take care of our headspace, and the role we play in creating a better environment around us and contributing towards a better earth must complement each other.
The recently concluded World Health Day focused on the physical, mental and spiritual health of people, which are fundamental to individual well-being, society, and even the environment. All these plains are interconnected.
However, through our consumerism-fuelled and instant gratification-based lifestyles, we have unwittingly disconnected from the source of the wealth, our health and the health of this planet. There is an urgent need to rectify this. It is most important to take a reality check, recalibrate and realign.
A chronic disease is one that lasts longer than three months. Statistics show that over 40% of Americans have a chronic disease, the top six being cancer, diabetes, hypertension, heart disease, lung-related conditions and mental illnesses. Over 80% of chronic diseases are driven by lifestyle practices. A typical holistic prescription would be to revise one’s diet, take good rest, plan an exercise regimen, meditate and pray (also suggested by therapists as journaling or practising gratitude).
It is said, “What you don›t pay for at the food table, you pay more for at the doctor.” One of the quickest indicators of one’s health is to the Body Mass Index (BMI). Normal BMI is between 18. 5 and 25; a person with a BMI between 25 and 30 is overweight and a person with a BMI over 30 is considered obese.
There is increasing evidence that a plant-based diet can reverse some of these conditions as they are rich in fibre, vitamins, minerals and antioxidants. Apart from that, it contributes towards saving the planet. A plant-based diet can combat climate change as it is known to produce less greenhouse gas emissions. Studies have proved that the meat processing and dairy production accounts for a major percentage of global greenhouse gas emissions, and water and land pollution.
Exercise is also an essential component for battling excess weight and maintaining optimal health. Being mindful of what we eat as well as how we function goes hand in hand in the journey of maintaining a healthy body.
Like any exercise routine or sport, meditation takes practice too. Meditation and breathing techniques can play an important role. They are the tools that help you calm your mind, and make you feel happy from within. Many illnesses can be helped through meditation and breathing techniques. Gurudev Sri Sri Ravi Shankar says, “Meditation is food for the soul.”
Practice and continual effort are required for what›s good, therefore taking out time to enrol in a de-stressing programme is ideal. Japanese farmer and philosopher Masanobu Fukuoka advises, “Purification of the human spirit and healing of land is the same process.” Shifting dimensions and attempting to reboot our spiritual health brings a balance in the long term. These steps bear fruit with time; regular practice and steady introspections are the way forward. Spiritual growth pertains to reaching out and connecting. The richness of life rests upon sharing its abundances; the fullness of a healthy life comes when we share the fullness of the wealth of who we are, when we reach out to others, think of others and offer them support during their hours of need. Those on the spiritual path know that it is due to such practices that an individual grows in an abundance of self. This is at the core of both the health and the wealth of who we are as individuals and as a community.
As one witnesses and realises that there is only one earth and that we are over-consuming and abusing her, the urge arises within us to take action and make a difference—not only for ourselves, but also for our family and friends, for the entire society. This is transformation.
So how does one make a difference?
• Have a go at doing things differently. For example, stop planting trees—plant a forest instead. A forest consists of seven integrated vertical layers of vegetation, not just a load of single trees
• Stop automatic food selection. Read labels, find out where it is sourced from and what type of soil it is grown in.
• Save up and buy better quality products so you throw away less.
• Grow some of your own food, even if it is just germinating some seeds on blotting paper. Growing broccoli is easy.
• Choose a topic and undertake some research, become informed
• Make decisions and choices that take tomorrows into consideration and not just today.
• Create some space. Ask yourself, how much stuff do I need, how much stuff can I redistribute, how much stuff can I do without? Of course, ask the more important question: how did I get so much stuff? There is an eye-opener in this one.
• The marketing departments of the world have figured out that we are a great lot of people for buying things we don›t need or want. Such goods look good to us but soon find their way into the trophy cupboard.
• Above all, take some time out to be in nature, with Mother Earth and just appreciate the simple things in life.
As Gurudev Sri Sri Ravi Shankar says, “Human evolution has two steps—from being somebody to being nobody; and from being nobody to being everybody. This knowledge can bring sharing and caring throughout the world.”
The author is an environmental scientist, safety and permaculture design consultant, and international Art of Living teacher.
CHAPTER PROCEEDINGS AND THE TYRANNY OF MUMBAI POLICE
The misuse of chapter proceedings by Mumbai Police is an example of how absolute power corrupts. The practice of conferring magisterial powers upon the police should be examined to ensure better justice.
James Madison had written, “The accumulation of all powers, legislative, executive, and judiciary, in the same hands… may justly be pronounced the very definition of tyranny.” This quotation came to my mind upon reading the news report “Mumbai Police closes chapter proceedings against Arnab”. So what are these chapter proceedings? These proceedings are a clear example of tyranny by the Mumbai Police.
Chapter case proceedings are initiated under the powers conferred vide Sections 107 to 111 of the Code of Criminal Procedure. Generally, a notice is issued to a person u/s 111 CrPC whereby he is asked to appear before the Executive Magistrate who has issued the notice. The person has to explain why he should not be made to sign a bond of good behaviour. If the Executive Magistrate is not satisfied with the answer, the person is asked to execute the bond and produce sureties vouching for his/her good behaviour. A fine amount is also decided—in accordance with the crime and the person’s financial capability—which the person would have to pay if he violates the conditions set in the bond. So far so good, one may say. It is a laudable initiative, for maintaining peace, thereby negating the Bollywood stereotype that the police always come at the end, after the deed is done.
The problem lies in the actual working of this section, which proves the Biblical saying, “The road to hell is paved with good intentions.” In Mumbai, the accuser, the judge and jury, and the hangman are one and the same: Mumbai Police. This concentration of powers continues despite being ultra vires of the Constitution of India. Article 50 enjoins the state to take steps to separate the judiciary from the executive in the public services of the state. This Article is based on Montesquieu’s doctrine, that one person or body of persons should not exercise all the three powers of the government viz. legislative, executive and judiciary.
The Executive Magistrate here is none other than the divisional Assistant Commissioner of Police [ACP], who is also designated as Special Executive Magistrate [SEM]. In Mumbai, one ACP supervises two to three police stations, thus he is a middle-level supervisory officer. If any person falls foul of the government of the day, it becomes very easy for the local politicians to get some Inspector of Police to initiate the proceedings by sending a report to the ACP, and the process starts. Once such proceedings are initiated, bond is sought for good behaviour, which can be confiscated on flimsy grounds by the ACP and then further proceedings are taken, which can result in externment, i.e. removal of the person from Greater Mumbai, imprisonment, denial of passport, etc. Appeal lies with the Home Secretary, another officer of the executive.
These proceedings were initiated against Arnab Goswami since it was alleged that he attempted to communalise two incidents, following which FIRs were registered. Even where the person is acquitted from the FIRs, the chapter proceedings continue. In Arnab’s case, they continued even though the FIR against him was stayed by the High Court. The proceedings are initiated to bypass the due process of law and sideline the judiciary, since the punishment is imposed by the executive. In the 1990s, the police had initiated such proceedings against this writer also, although there was no FIR lodged against him.
The roads of Sion Koliwada in Mumbai have been occupied by roadside mechanics who repair vehicles in the middle of the road after encroaching on the footpaths with their tools. This results in traffic jams and noise pollution due to the denting and painting of the vehicles. Gas cutters are used to cut metal on the road, causing a fire hazard. Upon complaints by this writer, action had been initiated by the Municipal Corporation and Traffic Police, thereby causing loss to entrenched interests. The Sion Police Station had gotten into the act and asked some mechanics to lodge non-cognizable complaints against me, on the basis of which they took up chapter case proceedings by issuing notice. I had met the ACP but found him to be adamant. However, as luck would have it, the senior inspector had been transferred and the police dropped the proceedings.
Such misuse is common, because power tends to corrupt and absolute power corrupts absolutely. A teacher’s house and a cycle repair shop were sought to be acquired by a builder but they were not willing to sell out. So what was the option for the builder? Your friendly neighbourhood Mumbai Police! The builder was facing several FIRs, but he had to lodge a counter-FIR and the police chipped in by initiating chapter proceedings! The only recourse for the poor tenants was the High Court. I quote from an order dated 23 September 2011 in Criminal Application No. 5547 of 2010:
“…The learned counsel for the applicant submits, the respondent had developed a grudge in league with the builders to harass the petitioners. She points out petitioner no. 1 is teacher while petitioner nos. 2 and 3 are conducting cycle repairing business. They have no other criminal record barring one they are facing with the builder/developer. It is seen from the record that the petitioners feel that their valuable rights in the property are being transgressed, encroached upon and mutilated by the efforts of the builder as contractor of the building. Consequently, in order to get redressal of their legitimate rights, applicants had on occasions put logical restraints to the builder’s acts.”
“The action initiated by the learned ACP of the region at the material time generates impression that to overcome earlier notices and court orders, subsequent exercise of show notice dated 11.10.2010 and 12.10.2010 have been caused. I do not see any reason to justify said reasons…”
In November 2014, this rampant misuse reached the High Court once again wherein notice was issued to the then Commissioner of Police, Rakesh Maria. Justice Sadhana Jadhav observed, “This practice is not only deprecated by this court, but the Commissioner of Police shall take note of the fact that issuance of such notice is illegal and is not in accordance with the provisions of the Code of Criminal Procedure, 1973.” This problem is peculiar to cities like Mumbai wherein the ACP has been nominated as the SEM. In the districts, this power rests with the Sub-divisional Magistrate, thereby there is some control over the police. Even in Delhi, the ACP does not have such powers hence such proposals are submitted to the SDM who retains some control.
This problem is connected to yet another problem, which is lingering despite instructions of the Supreme Court in Prakash Singh v. UoI: that of political control over the police and interference by local politicians. Considering the revelations about the ‘Rs 100 crore targets’, it becomes clear why the politicians are unwilling to let go of the goose which lays golden eggs. In any case, conferring magisterial powers upon the police is just like trusting the wolf to guard the sheep. But who will bell the cat? The politicians will not renounce that power just like that. Citizens will have to undertake a campaign to secure accountability. This is where Arnab comes in. He needs to expose this misuse of power and the judiciary needs to be moved to ensure the separation of powers as enshrined in the Constitution of India.
The author is an officer of the Indian Revenue Service. The views expressed are personal.
Writers Qi presents College Brew: Experts Answer College-Related Queries
NewsX partnered with Writers Qi for an enthralling session titled ‘College Brew with Writers Qi’ where experts talk about college applications, essay writing, the Admission process and much more.
NewsX partnered with Writers Qi for an enthralling session titled ‘College Brew with Writers Qi’ where experts talk about college applications, essay writing, the Admission process and much more.
NewsX was joined by an expert panel which included Viral Doshi, Independent Counselor, Anjali Raghbeer, Founder, Writers QI, Raj Chinai, Managing director, LCR capital, Doris Bechstein, International Market Manager, India and Africa, University of Bristol, Erica Sin, Director of Tutoring, Abborbridge, and Lauren Kushnick, Assistant Director of the Admission, the New School.
Anjali Raghbeer, Founder, Writers Qi talked about the importance of the essay and explained, “Why is the essay important? and that’s something that I want you to kind of focus on, because the common app form for those of you who opened it, and for those of you who have seen it, you will see that it’s a very extensive document, it covers your academics, it covers your test scores, it covers recommendations from both your teachers, as well as the counsellor of your school. It has a section of 10 activities where you will fill out your extracurriculars. So whether you worked on a research paper, or you worked in community service, or you’re the head boy or sports captain, all of that would be covered within the extracurricular section, which is about 10, and does have a specific word count for that, which I will be guiding my students through as to what how to sort of succinctly market yourself within those sections”
Viral Doshi began by explaining the key components to focus on when thinking of applying to a top school and he said, “ I always tell students five things is what the American colleges look at, your academics grade at 9, 10, 11 and 12. They like to have consistency or an upward graph. It doesn’t make a difference which board you studied, they want to have consistency. Two, they will look at a standardized test, which is now onwards to be your SAT. Three will be your extracurriculars, four will be your recommendations, and five will be your essays.”
Raj Chinai gave insights about the Green card and said, “There are 85,000 slots available and the applications for this, this year, for example, are of 275,000 applications for each one being that make basically means you have a 31% chance of getting an H1B that allows you to get sponsored by an employer. This is again, very restrictive in its nature, you cannot paint jobs, you cannot change locations, you cannot even change your job function. So once again, H1B is a very restrictive option for those of you thinking about pursuing a permanent residency in the US. The alternative is the EB five visa, which you’ll see on the top part of this page and you can see just visually it’s a much more simplified shorter set of steps, you apply for IFL 26. Once you achieve that, you can then go through the process, get your green card, and after getting your green card, you can pursue any job in any industry in any geography that you wish in the United States.”
Doris Bechstein shared about their University and explained, “We are in the southwest of the UK, which is a beautiful part of land about an hour away from London. With our six faculties, we literally sort of half everything that a student might want to study with us. We were also the first university in the UK to admit men and women on equal footing. So that’s very important to us. You know, the ethos of the university is strong academic strong research and strong.”
Erica Sin shed light on the strong will of students for taking exams even in the pandemic and said, “ think you hit the nail on the head, if a student wants to take it, they’re going to take it. And they’re very strong-minded and willed in that way. Our advice in our realm, because we just are, what we like to do is work a lot with counsellors and families and say, okay, what’s going to work for you? What’s going to work for your overall workload, what’s going to work for sort of your overall profile, because I think as much as students might have these scores, and be able to submit that, then they’re becoming less relevant overall. They’re not going to be sort of the end all be all of your application, they may be sort of the straw that breaks the camel’s back.”
Speaking about the designing, Lauren Kushnick said, “when students come to think of design, it’s so much more than just a specific small area, or lens it actually informs how we interact with one another, how our communities Connect, how we live our lives design is so integrated into me. I mean, this moment right now how we’re engaging right now this is a designed platform that involves so many layers of code and investigation into how communication is best made. And I was just speaking with our interior design faculty the other day And Carter was saying. This is such a unique interior design moment. We’re all in each other’s homes in this really unusual way as well. So, we’re seeing how design plays out on lots of different levels. Of course, students in high school might not have access to all of the same high levels of investigation that you will, of course, be doing in college. So it’s, I think, important to talk about your passions, I think it’s important to talk about what fires you up what engages you.”
Watch the entire telecast here:
DIGITAL HEALTH WOULD MAKE HEALTHCARE ACCESSIBLE FOR INDIANS: PRAVEEN SINGHAL
In an exclusive conversation with NewsX as part of NewsX India A-List, Praveen Singhal, co-founder and director of BeatMySugar, spoke about his venture which is a one-stop platform for pre-diabetic and diabetic patients. BeatMySugar is a tech-powered, comprehensive, and unique platform that focuses on making best-in-class diabetes care effortless, affordable, and easily accessible to everyone. Speaking about the ethos of the company, Praveen Singhal said, “BeatMySugar is a platform for people with diabetes with an intent to be true partners in life. So the ethos driving the corporate culture is in sync with it and our ethos are collaborative, transparent, progressive, and integrity. We believe in growing along with all our stakeholders and delivering the best solutions to our customers using the progressive tools and technologies available in the area of healthcare.”
Talking about how the platform is inclusive for its customers, Singhal stated, “There are three main pillars of BeatMySugar: education, product, and service. In education, we have very exclusively self-curated content from various key opinion leaders and our internal medical affairs team to disseminate the right information and knowledge to diabetic people. Along with that, we have come up with a diabetes education programme co-authored by leading diabetologists of national and international repute to help people understand the basics of diabetes so that they can start self-monitoring. On the product side, whatever a person with diabetes needs, such as food, supplements, books, medicines, and devices, we make it available to them. The core of BeatMySugar services is to help them manage their lifestyle in terms of doctor’s consultation, diet, fitness plans, lab services and fulfilling their other requirements. That’s why we call it an inclusive model for diabetic people.”
Speaking about the idea of starting a one-stop platform for people with diabetes, he said, “It came from within the families of co-founders with two of them being diabetic. Shaurya was diagnosed with type II diabetes at the age of 12 and Atul had type II diabetes for over two decades. Having understood the pain and the trouble they had in finding all the requirements in one place, led to the thought of creating a one-stop platform. After that, we found that though India is becoming the world capital of diabetes, awareness, and the right information about the same is completely missing. That’s when we came up with the concept of BeatMySugar.”
Sharing the offers and the benefits that BeatMySugar provides to its customers and how can it serve those who have diabetes, Singhal elaborated, “The help is in the form of complete care and that is what we intend to provide. It is driven by our concept which is in the DNA of our company and that is: Educate, empathise, engage, and evolve. With this, we are there to take care of all the requirements and be the true partners to our customers in their journey with diabetes.”
Talking about the reluctance and the fear in the minds of those having the disease, he shed some light upon the transparency of the company and gaining the trust of the customers, ”Our ethos of transparency and integrity drive people’s trust and that gets reflected in the results we have had so far. At present, we have over 35% orders from our customers. This also gets accelerated as this is one place where they get all the right information. The doctors that are associated with us and the available content is a way of helping them get the right information about diabetes,” he said.
Speaking about the common queries, Singhal underlined, ”The major query that we get is surprisingly from various brands and vendors wherein they are showing interest to collaborate with us and asking how they can do so or how their products can be onboarded with BeatMySugar. It is very interesting and motivating for us as it shows the kind of traction and visibility this platform has already built.”
EXAMINING WOMEN’S ROLE IN PANCHAYATI RAJ
With the recent election of Kamala Harris as the first female Vice President of the United States, the global discourse around gender equity has moved to the skewed participation of women in politics. Although Article 15 of the Constitution prohibits discriminating Indian citizens based on gender, women have been marginalized and excluded from the decision-making and political process. In terms of women’s participation in the government, India is ranked 148th in the world out of 193 nations. With 65.5% of the Indian population living in rural areas, powerful institutions such as the Panchayati Raj can empower the community to make decisions for themselves. Before 1985, only two women had participated in the Panchayati Raj Institutions in Punjab, Madhya Pradesh, Gujarat, West Bengal and Rajasthan. Additionally, Uttar Pradesh had had no political participation from women (Ahmad et al, 2008). This had led to the introduction of the 64th Amendment Bill, which had a special feature for 30% reservation for women. Although the bill was not passed, it had been a step in the right direction.
In April 1993, India took a landmark step towards development with the implementation of the 73rd Amendment to the Constitution which provided reservations for weaker segments of the population in Panchayat Raj Institutions. Through this Amendment, one-third of the seats are reserved for women as members and chairpersons of these institutions. By 1995, the number of women in Panchayats rose sharply, with the highest representation in Kerala and Madhya Pradesh where women filled 38% of the seats (Ahmad et al., 2008). There are 1.3 million women out of the 3 million representatives who are now actively participating in Panchayats (Bhatnagar, 2019). Currently, 20 states in India have made provisions in their respective State Panchayati Raj Acts and increased the reservation of women to 50%. Additionally, states such as Odisha have made it mandatory that if the chairperson in a village is a man, the vice-chairperson must be a woman (Mohanty, 1995). The reservation provisions for women have transformed grassroots democracy and given rural women the power to exercise their right and be involved in village governance.
Women’s participation in grassroots politics has been low due to the patriarchal mindset that women belong at home, where their responsibilities are confined to domestic work and child rearing (Chhibber, 2002). Women are thus actively discriminated against and since they have limited decision-making powers at home it is unrealistic to assume that they have many opportunities to make decisions for the community. With the foundation of change being laid by the 73rd Amendment, there has been a shift in the political landscape and women are becoming more proactive. Elected women representatives have transformed local governance by strengthening the status of marginalised sections of society and empowering those who don’t have a voice. Moreover, they inspire other women in society to break gender stereotypes and include themselves in the decision-making process.
Another important role that elected women representatives play is to bring about rural development. They have been able to tackle various political obstacles and introduce changes that are paramount to the well-being of their communities. Women are known to be effective leaders and bring in transparency and efficiency in their daily duties and administration. They understand the needs of their community and work well to bring awareness and solve issues that the community faces. Hence, in many cases, despite tackling various obstacles such as having to lobby hard for extra funds and resources, women leaders bring faster rural development than their male predecessors. Furthermore, women are considered to be the perfect agents of social revolution, standing up against socially regressive practices such as child marriage, the purdah system and dowry system to build a society free from oppression and discrimination.
With the entry of women in the political arena, the face of democracy has changed from a representative democracy to a participatory one. With women taking the leadership role in villages, they are mobilised with resources to take action against any form of caste-based or gendered violence. From viewing women as recipients of welfare benefits to involving them as successful agents of revolution, the debate on female empowerment has progressed (Zahir, 2018). However, despite being leaders, women continue to face numerous obstacles which make them vulnerable to discrimination and abuse.
Although there are no constitutional obstacles for the participation of women at the grassroots level, there are prevailing structural, functional and societal constraints that affect their political participation (Dubey et al., 2013). The 73rdAmendment was intended to include women in the political narrative however, women serving as proxies for their male relatives have questioned the efficacy of reservations for women. In some cases, these men cannot stand for elections because they do not fulfil the education requirements and take advantage of the seats reserved for women in their area (Mayal, n.d.). Under these circumstances, women are just politically unaware figureheads, while the men hold the real decision-making powers.
Additionally, elected women representatives have a tedious job with a myriad of roles and responsibilities to ensure the well-being of their community but earn meagre salaries. Some only receive an honorarium of Rs 3,000 in states such as Maharashtra, Odisha, Gujarat and Tamil Nadu (Chandra & Banoth, 2020). Furthermore, women who are panchayat presidents are not allowed any salaried jobs or employment under government-funded schemes, which renders these women economically powerless.
Historically, it is believed that women aren’t capable of making decisions and taking up leadership roles despite performing more duties than their male counterparts. Cultural barriers and a patriarchal mindset still plague many villages where men view women who are empowered leaders as a threat. Elected women representatives face obstacles such as a lack of faith in their decision-making capacities as a leader and the dominance of male members in the panchayat. Furthermore, women are subjected to politically motivated and gender-based violence in various forms which stagnate their participation in grassroots politics (Rao, 2018). However, women leaders can have an enormous impact in reshaping society and thus there is a need to tackle the obstacles that hinder women from discovering their full potential as leaders and change-makers.
Representation is a measure of equality. However, in India it is effective representation that truly matters. This can only occur when there are no structural, functional and societal constraints that impede women’s participation in grassroots politics. By removing gender-based discrimination in politics, India will be one step closer in empowering its women. Women empowerment, which is the need of the hour, can therefore be achieved through political participation where women would have a chance to broaden their horizons and make a change in society.
Avantika Singh is pursuing a master’s degree in public policy at O.P. Jindal Global University.
REPURPOSED DRUGS FOR COVID-19: WHY WHO DOESN’T TRUST THEM?
There is evidence that many repurposed antivirals, antiprotozoal, and anti-bacterial drugs have hidden talents to combat Covid-19, at least partially, and it might be logical to use them when the virus is replicating in the patient’s body.
Horace Greeley once said, “Common sense is very uncommon!” The recently published interim report of extended solidarity trial published in NEJM on 2 December 2020, “Repurposed Antiviral Drugs for Covid-19”, reported that antiviral drugs (hydroxychloroquine, Remdesivir, lopinavir, interferon) failed to win the race when compared to the placebo, in an assigned group of patients.
The WHO does not trust drugs like ivermectin, Doxy, etc. Many senior microbiologists and intensivists would laugh it out, arguing that these drugs would only help in controlling parasitic infestations. Harrington et al, therefore, appropriately chose a title (“A Large, Simple Trial Leading to Complex Questions”) for their argumentative editorial. They wrote, “No intervention acts on two persons in an identical fashion: patients present with different risk factors, are treated in different healthcare settings, and begin treatment at different stages of illness. In particular, the effectiveness of an antiviral agent can depend on whether a patient presents early (during viral pathogenesis) or later (when immunopathologic conditions or other complications may be more important).” They also pointed out the usefulness of the result of the ‘solidarity trial’ in denying the role of antiviral agents in patients who have entered in the second phase of illness described as the cytokine storm. Rightly, they asked, “What is a more effective timing for the use of Remdesivir, and should it be used in combination with other agents? How is the course of hospitalization affected by the type and level of care delivered in particular settings?”
This is the question of common sense: why not use an antiviral agent when the virus is replicating? What role can they play once the war for life has entered a phase where the virus itself has been cornered?
This is the argument extended in the recovery trial against the early use of steroids, so not to time it with viral replication phase. The results of the recovery trial, however, supports the use of the steroids in late first and second weeks when evidence of lung involvement is evident by rising oxygen requirement and falling SPO2 <95%. In various articles, it has been shown that viral replication in the upper respiratory tract, to a larger extent, is immunologically inert. Once the virus climbs down to the pneumocyte type II cells, its pathological journey starts and gets reciprocated by the dysregulated immunological response, sequentially leading to diffuse alveolar damage, inflammatory infiltrates, microvascular thrombosis, resulting in a simulating picture of adult acute respiratory syndrome. No wonder, classical findings of rising levels of interleukins 10/6, TNFα, evidence of lymphocyte exhaustion and lymphopenia come almost hand in hand.
Drugs like doxycycline and ivermectin have been used rampantly in every nook and corner of northern-western India. Interestingly, ICMR is playing ‘once bitten and twice shy’, because India was the first country which boldly adopted HCQ prophylaxis and was thoroughly criticized by Americans. The criticism came in the wake of deaths reported in Covid patients receiving HCQ. Analysis says that HCQ and azithromycin are potential drugs which may adversely affect the conduction system; at least 60-70% patients with late phase Covid may have myocardial edema, making them a substrate for arrhythmia. It is the CDC which allows almost no medicines in the first week of illness. India has improved in its recovery rate, remarkably from 60% to 95%. How? I talked to many friends who were partying hard, and one after another, became Covid-positive. They consulted a local physician and got a prescription of Ivermectin 24 mg, Doxy 100 mg twice a day, zinc, vitamin D, vitamin C, and even favipiravir, as soon as the report was received, and recovered completely. There are many patients who presented with anosmia. Those who were treated with ivermectin recovered within 7-10 days. I came to know about this in March but experienced it now when I became Covid-positive. Globally, people are experiencing good results from the use of ivermectin.
Therefore, there is evidence that many repurposed antivirals, antiprotozoal, and anti-bacterial drugs have hidden talents to combat Covid-19, at least partially. These drugs are less harmful when one compares them to the 5-10% chance of having serious lung, heart, kidney and brain complications. Patients probably need cardiac care, LMWH or antiplatelets, statins for a longer period, but in a nutshell, patients who recover the second or third phase are obviously not the fittest to survive.
Jeon et al wrote, “Among the 48 drugs that were evaluated in our study, 24 drugs showed potential antiviral activities against SARS-CoV-2, with IC50 values in between 0.1 and 10 μM. Few of them are as follows—tilorone, cyclosporine, chloroquine, mefloquine, amodiaquine, proscillaridin, salinomycin, ouabain, cepharanthine, ciclesonide, oxyclozanide, anidulafungin, gilteritinib, berbamine, ivacaftor, bazedoxifene, niclosamide, and eltrombopag.”
It is common sense that the first five days are of viral replication and subsequently 10% chance of having a vicious immunological storm. Conversely, it is logical to use repurposed antiviral drugs when the virus is replicating and steroids only when the body is brewing cytokines to bring a storm and lymphocytes in back-foot.
Vaccines are illusionary in view of the fact that the duration of trials has been accelerated too fast. Tinkering with the immune system is always a double-edged sword. The oral polio vaccine was introduced in the 70s and there were fears of its association with autism. It took more than 20 years to convince the government in the US. Till now the flu vaccine is not considered as the safest and most efficient vaccine for various reasons. We must remember that natural infection has failed to ensure long-lasting immunity. There are articles suggesting that the virus may co-exist with IgG in asymptomatic or mildly symptomatic patients.
The author is a paediatric cardiologist at Manipal Hospital, Delhi. The views expressed are personal.
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