Six months, according to Bipin Jana, 45, whose eight-year-old son Parmeshwar has stage-4 Hodgkin’s lymphoma. That is how long it took the family, travelling 2,000 km across West Bengal, New Delhi and finally, Mumbai, to get an effective diagnosis and start treatment.

Parmeshwar is currently undergoing chemotherapy at the Tata Memorial Hospital (TMH), Mumbai, India’s foremost cancer treatment centre. Almost half (43.6%) of the children with cancer admitted here had to travel over 1,300 km to reach the hospital, records showed. Up to 10% travelled over 2,200 km and 20% had undergone alternative or incomplete treatments before reaching TMH.

Worldwide, most children with cancer are from low- to middle-income countries and have poor survival rates, showed the study published in The Lancet Oncology, a global journal, in July 2019.

India has the highest prevalence of childhood cancer which can be traced to its higher population of young people, 30% of its population is below 14 years, according to 2011 Census.

In order to understand why most children with cancer in India do not survive five years, IndiaSpend interviewed patients, non-governmental organisations and doctors. Delays in diagnosis, high medical expenses and non-completion of treatment are significant reasons, we found.

Survival rate can be 70% with timely care

About 50,000 Indian children between 0-19 years of age suffer from cancer each year, according to The Lancet study we mentioned. “However we think the actual figure is closer to 75,000,” said Girish Chinnaswamy, head oncologist at the TMH.

Approximately 20,000 children remain undiagnosed and untreated and their survival rate is 0%, he said. “For the 55,000 who are accessing treatment, 15,000 are receiving a good standard of treatment with trained oncologists as well as social, dietary and financial support and this group has a survival rate of 70%,” he said.

The other 20,000-30,000 are visiting centres with less-trained oncologists and without holistic components such as education, social support and nutrition. Their survival rate is around 30-40%, said Chinnaswamy.

“The problem is that families are not accessing appropriate treatment, or they are abandoning treatment once it has started,” said Anil Nair, chief executive officer of St Jude India ChildCare Centres (SJICC), which provides accommodation for parents and children undergoing cancer treatment in six cities including Mumbai.

Another factor is the high cost of treating paediatric cancers. “Unlike cancers in adults, cancers in children need a whole team of medical oncologist, radiologist, pathologist, internist etc,” pointed out Shripad Banavali, director, academics and professor of paediatric and medical oncology at the TMH.

No facilities in rural areas

Nearly 70% of Indian population lives in rural India. However, nearly 95% of cancer-care facilities are in urban India. India has 0.98 oncologists per million population, compared to 15.39 in China, 25.63 in the Philippines and 1.14 in Iran, as IndiaSpend reported in September 2017.

Centres such as TMH offer tertiary care which means that they offer specialised medical services. So the patient is likely to go to a doctor at a primary or secondary facility for a diagnosis, then he/she is sent to the nearest big hospital for treatment and finally referred to a cancer treatment centre.

The TMH treats 2,800 children with cancer each year. However there are less than 8-10 big paediatric cancer centres in India, and almost all are located in large cities such as Mumbai, Delhi, Pune, Bengaluru, Chennai and Kolkata, as per Banavali.

“We need at least 20 big centres that treat paediatric cancer in India,” he estimated. “We also need more paediatric centres and more people willing to come forward to fund treatment for children as the treatment is expensive.”

Long route to treatment

Parmeshwar’s own journey, starting from his village Nandigram in West Bengal’s south-eastern district of Purba Medinipur, illustrates the long route to treatment for most patients in India.

Parmeshwar had a high fever–for three months–which refused to subside despite treatment. His father worked as a dishwasher in a hotel in Mumbai but had to quit to care for his son. Parmeshwar’s illness was first misdiagnosed as typhoid and, then, malaria. After this the family travelled to Kolkata, where he was admitted for weeks in a hospital but got no treatment.

When nothing appeared to work, Jana brought Parmeshwar to the All India Institute of Medical Sciences (AIIMS), New Delhi, India’s best-known tertiary care centre. But no vacant beds were available for the child. Parmeshwar was then sent to Safdarjung Hospital, one of the five government hospitals in the city. It was here that he was put through an ultrasound test for the first time–three months after he first fell sick.

“The hospital staff asked me what were we doing, why it took so long to start the investigations,” recalled Jana. “I told them I kept telling doctors but no one listened to me.” Parmeshwar was then detected with Kala Azar or visceral leishmaniasis and underwent treatment for a month but did not get any better.

The doctors at Safdarjung Hospital then conducted a biopsy and a bone marrow test. He was finally diagnosed with stage-4 Hodgkin’s lymphoma. “Had I known it is cancer, I wouldn’t have waited for six months for diagnosis, I would have directly come to Mumbai,” said Jana, breaking down.

Parmeshwar was finally sent to TMH and the cancer treatment started in August 2019–six months after he first spiked a fever.

Parmeshwar, 8, with his parents Bipin and Mamata Jana, at the St Jude India ChildCare Centre in Mumbai.

“These treatments may not be sufficiently executed, which can ultimately make the cancer more resistant to treatment and as a result lengthen the process of treatment,” said Chinnaswamy.

Source: Tata Memorial Hospital records accessed by IndiaSpend
Note: Data for the year 2018

“This is not a direct journey either,” added Nair of St Judes. “Families have usually spent most of their money before they reach treatment, travelling from doctor to doctor and paying for different treatments before being referred.”

Abandoning treatment

For children undergoing treatment, at least a third of the survival gap is due to unfinished treatment. Up to 90% of children with cancer in lower middle-income countries will abandon treatment, compared to 15% worldwide. It is estimated that lower middle-income countries account for 99% of treatment abandonment worldwide.

Families abandon treatment to opt for traditional complementary alternative medicine (31%), because of financial constraints (28%), or false belief that cancer is incurable (26%), found a study which analysed patients over six years at TMH.

“Just the cost of staying in Mumbai itself during treatment costs about as much as the treatment and this can force many families to head back home before treatment is finished,” explained Nair of St Jude’s.

Jana has spent close to Rs 1 lakh that he raised from friends and family members to pay for his son’s treatment. Once in Mumbai, the family was lucky enough to find a place to stay at St Jude’s. Facilities here include individual family living units, shared common kitchen and dining areas, educational and sanitary guidance for parents, and family counselling–all to give the child the best chance of beating cancer, said Nair.

Families that do not have access to facilities like this will often live on the footpath next to cancer centres for as much as two years, leaving the child vulnerable to secondary infections. Families thus survive without toilets or cooking facilities. The overall experience can leave families dejected and demoralised to the point where they often abandon treatment and return home.

“To eliminate these causes of abandonment, treatment requires a multidisciplinary team–oncologists, nutritionists, nurses, psychologists, data scientists, and social workers,” said Chinnaswamy. “This is the difference between at least 50 centres in the country which have a survival rate of 70%, compared to the others which have 30-40%.”

The introduction of social workers, financial assistance, accommodation, counselling, infection guidance control, school education for parents to the treatment process at TMH doubled the number of lives saved per year, reducing abandonment rate from 20% in 2009 to 4% in 2016, as well as the refusal to undertake treatment reducing from 9% to 2.7%, found a March 2019 study by the TMH.

While Bipin Jana is satisfied with the treatment his son has received in Mumbai, he regrets the six months wasted in getting here. “My son’s life is now in God’s hands,” he said.

This story was first published here on Healthcheck.

(Habershon, a graduate from the University of Manchester, is an intern with IndiaSpend. Yadavar is a special correspondent with HealthCheck.in and IndiaSpend.)

Courtesy: India Spend

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“I am an Indian. I am a Muslim. I am the part you won’t recognise. But get used to me.” (Photo: Rhythum Seth/ The Quint)

“I am an Indian. I am a Muslim. I am the part you won’t recognise. But get used to me. Confident, unapologetic. my name, not yours; my religion, not yours; my food, my choice; my clothes, my choice; my goals, my own; my skullcap, my choice; my hijab, my choice; my beard, my choice; get used to me.”

Far too often you have labelled me as stranger, anti-national, terrorist, sickular. You’ve called me ‘Memon ke baarati’, ‘Kasab ke bhai’, and ‘Aurangzeb ki aulaad’. You demonise my religion and impose your way of life on me. You want discriminatory legislations against my religion. From Gujarat to Muzaffarnagar, Dadri to Alwar, you unleashed your fury on innocent people.

‘Proud of Being an Indian and a Muslim’

You want to insist that Islam is not acceptable in this country. You want aggressive cultural nationalism to be forced on us, almost as if we had no right to believe, the way we believe.

You represent the forces in our society that are hell-bent on denying us a dignified existence in this country. You want me to go to Pakistan as you claim more entitlement to this land than others. It’s not just an offence to the Muslims, it’s an offence to India.

Let me tell you who I am. I am a Muslim, I am a human being and I am an Indian. Islam is my way of life. I am not hateful or intolerant. I am just a Muslim. I consider religion as a medium through which we can contribute to the world.

I believe that everyone is free to practice their religion. I love this land as much as anyone else and I love the people of this land even though some don’t view me as equal. As an Indian Muslim, I am proud of both being a Muslim and an Indian.

‘Get Used to me’

I refuse to accept your constrictive definition of nationalism. I will be at the forefront of this battle that wants to twist my faith. I will respond to your hate and ignorance in the same way Muslim American Muhammad Ali responded to the bigots and hate-mongers of his time:

“I am America. I am the part you won’t recognise. But get used to me. Black, confident, cocky; my name, not yours; my religion, not yours; my goals, my own; get used to me. “ — Muhammad Ali

Ali’s words give me courage in these troubled times. He is my inspiration and that’s who I want to be. Not only was he confident, but he loved his faith and he proudly represented Islam. He never missed an opportunity to tell people that he was who he was because of his faith.

This story, first published on Medium.com is being republished with the author's permission.
 

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Image:  AFP/TAUSEEF MUSTAFA

Twitter, like most of India, has recently seen a flurry of proclamations and professions of nationalism. The most surprising of these come from Kashmir – subject to over 100 days of curfew since July – and are beautifully captured by the #kashmirlovesindia hashtag.

The innocuous Twitter accounts weaving this narrative, 140 characters at a time, have pictures of young women with generic Muslim first names and inventive last names, often Khan and Kashmiri. In many of these assertions, there is vehement condemnation for terrorism and Pakistan strewn into the same sentence while photos in jarring neon mention how “every Kashmiri loves India”. Heartwarming as it is to hear such loyalty for the nation and disaffection for Pakistan, how close are these assertions to the truth?

 

 
 

The map of India, with Kashmir as its crowning glory, has had the persuasive capacity to structure the national imagination as one in which Kashmir is seen as an integral part of the Indian mainland. As many have pointed out, this imagination often excludes Kashmiris themselves. Voices from within are often heard, yet seldom listened to. When slogans of azadiring across the Valley, the people are termed ungrateful.

But what many Indians fail to recognise or even accept is the reflexive disposition of Kashmiris to resist the nation. Kashmiris embody this disposition from early adolescence. Even those who do not actively participate in the Kashmiri resistance movement verbalise hostility towards the Indian nation in speech and acts. They do not take to arms or to the streets to protest, but collude ideologically and resist passively. They may not be the voices ringing out on the streets, but they shape the discourse through living room conversations.

Modes of passive resistance and disguised ideological insubordination operate differently and can be distinguished from the stone pelting and slogan chanting of the streets.

Many in Kashmir are – or seek to be – employed by the Indian state, yet can be found in private spaces acting in ways or holding beliefs that could potentially be termed seditious. They typically express their opinion openly, yet it is disguised. The active protesting of recent years was not always necessary to lift the veil of quiescence. When former Jammu and Kashmir Chief Minister Farooq Abdullah publicly claimed that anti-India slogans were normal in Kashmir earlier this year, it came as a surprise to the rest of the country. However, for any one growing up in Kashmir, the anti-India sentiment is a popularly acknowledged one.

Everyday resistance

In a recent interview, soldiers employed by the state government described their condition as “aazad Hindustan ke gulaam sipaahi" – enslaved soldiers of an Independent India. This view is common and is also present among children. For instance, at flag-hoisting ceremonies in Kashmir’s schools, even in those run by the Indian Army, many Kashmiri students intentionally disrespect the tricolour. There are rules to hoist the flag, and students usually ignore these rules as the urge for insubordination runs deep in their minds.

Similar incidents are noted during the singing of the Indian national anthem. One is expected to stand still in reverence while it plays. But students in schools all across the Valley find glee in fidgeting during a rendition.

A few months ago, an incident at a school in Srinagar made news when a guest asked its students if India deserved a permanent seat in the United Nation. The students disagreed, leaving him surprised and school authorities embarrassed.

Similarly, Indian national holidays – Independence Day and Republic Day – are symbolically marked as black days.

Kashmiris use cricket as another avenue for everyday, symbolic resistance against the Indian state. Hostility against India is especially high during a cricket match. The pointed support of Kashmiris for whichever team plays against India provides a much needed, active space for resistance. It is common to hear that if India played Israel in any sport, Kashmiris would support Israel. This is a bold assertion in light of the solidarity the Valley feels for Palestine.

These acts reflect the widespread belief that historically, Kashmir's accession to India was not legitimate, and on reports of human rights violations, which together have made Kashmiris even more resentful towards the nation. This discourse needs to be heard, accepted and then dealt with.
 

Online activism

The growth of smartphones and social media has now created a vast online space for digital activism, and provided an outlet for resistance online. There are often government restrictions on telecommunications and gags on the local media, making the internet an important platform for engaging in political discourse. Mobile internet was restricted recently for the same reason. Nevertheless, tech-savvy activists have taken to the internet, using WhatsApp, Facebook, Twitter and blogs to have discussions and spread their messages. Attempting to mask this dissent by threatening such activists or creating fake accounts to cover up the shame of so-called anti-nationalism on these platforms is far from the solution.

If history is anything to go by, the deadlock will continue. Many Kashmiris resent the separatists, especially given the economic shutdown of the past three months, but to suggest that Kashmiris love India is also false, to say the least.

To understand the full picture, it is essential for Indians to look beyond the five people they speak to in the tourist towns of Gulmarg and Pahalgam and the security personnel they see during visits to the Valley. Engage and converse with people who live the reality that is Kashmir. Pressing the heart button on tweets that align with one’s beliefs is not enough. Empathise. Living under the constant gaze of the much disliked other is not always pleasant. And if readers still do not get it, here is some dark humour (a shameless plug) in the hope that they do.

Onaiza Drabu is a graduate in anthropology and writes, illustrates and talks about Kashmir in her spare time.

(This article was first published on Scroll.in.)
 

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पंडे-पुरोहित चला रहे हैं देश.

हम गोमूत्र पीने के ही काबिल देश हैं.

सरकार पिला कर मानेगी और हम पी कर रहेंगे!

हम सब अपने चारों ओर विज्ञान और टेक्नोलॉजी से घिरे हुए हैं. जीवन के हर क्षेत्र में इनका असर है.

ऐसे समय में केंद्र सरकार स्पेक्ट्रम की नीलामी को श्राद्ध यानी पितृ पक्ष खत्म होने तक टालने का मन बना रही है. 1अक्तूबर से नवरात्र शुरू है. टेलीकॉम कंपनियों ने सरकार को लिखकर दिया है कि वे शुभ मुहूर्त में ही यह बोली लगाना चाहती हैं. भारत सरकार के टेलीकॉम सचिव इसके लिए तैयार हैं.

स्पेक्ट्रम तरंगो का वह सुपर हाईवे है जिसपर चलकर हमारी मोबाइल आवाज और डाटा का सफर तय होता है.

एक पोंगापंथी देश सबसे आधुनिक टेक्नोलॉजी को कैसे अपनाता है, इसकी मिसाल हैं हम.

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"I refuse to believe that every Page One editor in every leading newspaper thought of the same exact headline. My guess is: This headline has been plagiarised from a tweet or a Facebook post."- Soumyadipto Banerjee
 
 
 
 

Sudip Ghosh came on Soumyadipto's stream and asked- Btw, most newspaper headlines in english and (in my case) Bengali had been inspired by FB or Tweeter slogans from the previous night. Simple and understandable, since that's the trend. If we can collect leads from fb updates, make news from twitter status, why not plagiarise news headings from the same sources on a given day? I see nothing wrong in this. After all, social media is the future of media, right ?
 
Sarah Salvadore in the same stream says- I agree Sudipda, But the problem with this is the next day's edition ends up looking like a copy paste job. There is definitely no dearth of witty and smart people online. But whatever happened to exercising your grey cells in the newsroom? I mean we can quote people from social media, not sure I feel comfortable using their lines as headline. Also, I wonder what the ethics are regarding attribution?
 
Neha Ved adds in the stream that the headline could have been inspired by Amul’s advertisement.

 
The discussion gets more vibrant and inquisitive when Ankur Pathak wonders- Even if the HL is plagiarised/inspired by a tweet/FB post, the point is the editors still decided to carry it same day, same edition right? The source material then becomes irrespective. It is baffling enough to know that they decided to go with this one and not anything else.

Soumyapta Banerjee continues- Yes Ankur Pathak. The headline is not even good. Times of India gave such a great headline when Abhinav Bindra won gold in the last Olympics. Sad to say newspapers are becoming a pale shadow of their earlier selves.Nothing wrong in picking up from social media but the result is what you see above. Gone are the days when I used to see my editors like Dipayan Chatterjee, Abhijit Dasgupta or R Rajagopal break their heads for a headline with alliteration. Those days editors searched in their heads, now the editors obviously log onto Twitter and Facbook for inspiration and it results into badly copied Hindi film titles. Nothing wrong in what is happening today, the difference is in the quality and herd mentality.
 
Mahul Brahma comments that it’s not just the English newspapers but Ganashakti, a reputed Bangla newspaper, that had also carried the same headline.

There were many LOLs (Laugh out Louds) and Hahahas in the stream! The virtual discussion was of course on Newspapers as big as Times Of India and Hindustan Times.
 
Dhiman Chattopadhyay on the same stream yet again finds the matching headlines weird. He wonders if the "headline writers are becoming lazier by the day – another side effect of crowd sourcing everything from story ideas to headlines from social media?"
 
Dale Bhagwagar, a PR agent comments- Arre yaar…. why is everyone thinking ulta. Might be a news agency report. Reporters/subs might have picked up the headline from an agency report and made it their own, adding individual inputs and bylines to the story (without realising that other papers might do the same.) Hota hai yaar. Any scribe/sub-ed would understand what I am talking about.
Yeh cheez aap logon ke dimaag mein kyun nahin aayee?
 
Soumyadipto Banerjee ends his Facebook stream with -News agencies (Reuters, PTI, UNI etc) have direct headlines that sound more like alerts. They won't suggest headlines like this.
I am not talking about their websites. I am talking about their news-feeds to leading media houses.
In any case, no news agency has suggested this headline.Also, if you are the page one editor dealing with the front page of a national newspaper and your headline is picked up from another web-site, you surely don't deserve the job.
 

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(Deepa Karmakar)

अच्छा…जब ये ओलम्पिक नहीं खेल रही होती हैं…तब आपकी उम्मीदें कहां होती हैं…जब ये घर चलाने के लिए चाय बेचती हैं, सब्ज़ी बेचती हैं…सरकारी नौकरी के लिए दर-दर पर गिड़गिड़ा रही होती हैं…कोच से साई के अधिकारियों तक के शोषण का शिकार हो रही होती हैं…लेकिन फिर भी खेल छोड़ना नहीं चाहती…

(Srabani Nanda)

तब क्या आप उनकी उम्मीदें जोड़ और संवार रहे होते हैं?

(Laxmi Rani Majhi)

क्या आपको एक समाज के तौर पर उनसे कोई भी उम्मीद रखने का हक़ है? आप उम्मीद रखिए क्रिकेटर्स से…इन जांबाज़ लड़कियों की जवाबदेही आपके प्रति नहीं है…आप ने जिनको कभी सम्मान और समाज में जगह तो जाने दीजिए. काम और रोटी तक नहीं दिए.वो आपकी उम्मीदों के बारे में सोच भी रही हैं, तो अपने आप से अन्याय ही कर रही हैं.

(Lalita Babar)

सुनो बहादुर लड़कियों, तुम हार रही हो…लेकिन ज़िंदगी की जंग जीत रही हो…इस स्वार्थी समाज के लिए खेल मत खेलो…देश के लिए मत खेलो…अपने लिए खेलो…अपने सम्मान और अपने फायदे के लिए खेलो…क्योंकि तुम खेल नहीं रही होती…तो ये ही लोग, जो आज ओलम्पिक में तुमको अपने सम्मान और उम्मीदों से जोड़ रहे हैं…वो तुमको सड़कों पर छेड़ते…तुमको घर में नौकरानी बना देते…तुमको अपने से तो जाने दो…घर से आगे नहीं बढ़ने देते…

कुछ भी करो…मेडल भी जीतो…वरना सिर्फ अपनी खुशी के लिए खेलो…इन लोगों को तुमसे उम्मीद रखने और जवाब मांगने का कोई हक़ नहीं है, बस इतना याद रखो…हां, जीतो, लड़ो…सिर्फ अपने लिए…

(Dutee Chand)

Deepa karmakar Laxmi Rani Majhi Dutee Chand Srabani Nanda Lalita Babar और बाकी सब के लिए भी…जाओ और खेलो…सिर्फ खेलो…अपने आप से उम्मीद रखो कि तुम लड़कियों के लिए बनाई गई समाज की हर बाधा तोड़ोगी…मर्ज़ी से जियोगी…

बस सिर्फ इतनी ही उम्मीद!

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बुधिया का दीन-हीन हमशक्ल खोजना मुश्किल काम था। कास्टिंग टीम ने हज़ारों बच्चो के ऑर्डिशन के बाद बड़ी मेहनत से एक चेहरा ढूंढा। पर्दे के बुधिया की कहानी भी असली बुधिया जैसी ही है। गरीब आदिवासी है, पिता नहीं है, अपनी मां और मामा के साथ रहता है। बच्चे का नाम मयूर है, लेकिन ना तो ठीक से नाम बता पाता है और ना उम्र। सिर्फ हां और ना में जवाब देता है। निरीह बच्चे की चुप्पी पर शो में लगातार ठहाके लगते रहे। बच्चे के बाद कैमरे पर उसके मां और मामा की पेशी हुई। दोनो ही निहायत ही गरीब और सहमे हुए।

कपिल शर्मा ने मयूर की मां से कहा– आपसे से अच्छा तो आपका बेटा है, कम से कम हां ना तो बोलता है। ना बोलने पूरे परिवार का जमकर मजाक उड़ाया गया। मयूर की छोटी बहन तक के बारे में कहा गया– अच्छा आपलोगो की तरह यह भी नहीं बोलती। सेट की लगभग अंधा कर देने वाली लाइटिंग के बीच गांव या कस्बे से आया एक निरीह परिवार चुपचाप इस तरह खड़ा रहा जैसे रैगिंग चल रही हो। हरेक चैनल में एक S& P (stander and practices ) डिपार्टमेंट होता है, जिसका काम यह देखना होता है कि कोई भी शो संवेनशीलता के किसी भी मापदंड का अतिक्रमण ना करे। ऐसा लगता है कि ऑन एयर करने से पहले S& P ने उसे प्रीव्यू ही नहीं किया। अगर किया तो यह बात उनकी समझ क्यों नहीं आई कि शो में मयूर के पूरे परिवार से जिस तरह से बात की गई वो निहायत ही क्रूर और अशोभीनय है। बॉलीवुड आजकल बायोपिक का खजाना खोदने में जुटा है।

बड़े और संपन्न लोगो के बाद अब नायक बनने की बारी मांझी और बुधिया जैसे गरीब लोगो की आई है। फिल्म का नाम पहले दुरंतो था। इसी नाम से इसे सेंसर सार्टिफिकेट भी मिला है, लेकिन बुधिया की पहचान को भुनाने के चक्कर में बाद में इसका नाम बदला गया। बुधिया सिंह वही बच्चा है, जिसके पीछे 10 साल पहले देश के सारे न्यूज़ चैनल हाथ धोकर पड़े थे। छह साल के विलक्षण एथलीट के रूप में उसकी कहानी घर-घर पहुंची थी। फिल्म रीलीज़ होने की बारी आई तो मीडिया ने जवानी की दहलीज पर कदम रख रहे बुधिया सिंह को फिर से ढूंढ निकाला।

बुधिया को कोच मर चुका है। सरकार पढ़ाई का खर्च तो उठा रही है, लेकिन ट्रेनिंग ठीक से नहीं हो पा रही है। एक बड़ा एथलीट बनने का सपना लगभग मर चुका है। फिल्म के बारे में मीडिया ने पूछा तो बुधिया ने बड़ा मार्मिक बयान दिया– मुझे पता नहीं था कि मैं बचपन में इतना बड़ा आदमी था।

The post अब नायक बनने की बारी बुधिया और मांझी जैसे गरीब लोगो की आई है appeared first on SabrangIndia.