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Where do I look for information?

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Source: Where do I look for information?

Written by JournalistsAgainstTB

July 23, 2017 at 3:57 am

Posted in TB and Media

The draconian world of TB

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The world of TB is a very intimidating and indeed a draconian one – and it’s not solely because it is a killer disease. Consider the reasons why:

The world of TB and the world of a child who is not doing well in school are much the same. When the child does well, the credit is shared by the entire family and school community that the child was connected with; when a TB patient goes on to complete treatment and gets well, the credit is for everyone to share.

When a child gets poor grades or a TB patient does not complete treatment and fails to get well, the onus shifts – the child is a non-performer, a laggard, an under-achiever etc. A TB patient is a defaulter, a drop-out & a living, walking, breathing nuisance to society waiting to breathe out the malicious bacilli into the lives of all those who came in contact with him/her.

The truth in fact is far from what people believe. A child performs badly not because s/he does not want to do well; the child under-performs because the system failed her/him in some way. A TB patient did not complete treatment and remained sick, or worse still died, not because s/he did not want to get well and was on a suicide mission – the patient did not get well because the system failed her/him in some way.

The TB sector in India (and probably in other parts of the world too) is oxymoronic in nature. We have the money; we have the expertise; we have the drugs; we have the infrastructure – and yet, we have TB figures on the rise and alarmingly so. We also have alphabets being added to it in profusion – DR, MDR, XDR and probably TDR. Why is this situation so? Is every TB patient on a suicide mission? Is there an insidious hand at work to kill the world with unchecked bacilli?

Let’s redefine the defaulter

What or who is a defaulter? The dictionary defines a defaulter as someone who ‘fails to fulfill a duty, obligation, or undertaking’. This definition begs a question. When a TB patient seeks treatment and has entrusted her/himself to a medical system, who gave the undertaking? What was the undertaking given for? The answer is obvious. The health system gave the patient a sacred undertaking and took on the duty of making her/him well. And then failed. So who is the defaulter? The patient or the system? It doesn’t take much intelligence to arrive at a logical answer. Undoubtedly, it is the system which has defaulted. It is the system which is the defaulter. If this be true then let’s shift the argument a bit.

When the system defaults

Does a bank ask a defaulter why s/he defaulted on a loan? It is understood that a person who borrowed money in trust will keep her/his obligation to pay it back. Then why must the patient be sympathetic of the system that failed her/him? Why must a patient accept the treatment (other than medical) that is currently being meted out?

Consider some facts – TB is a disease of the poor. Myth or fact? A bit of both. But it is accepted that it affects the poor disproportionately. And kills very often. Let’s look into the world of a TB patient and what s/he has to go through on the route to recovery.

First off – loss of identity – from the moment s/he is diagnosed, their identity is subsumed by a box. They become a number on a box, which is visited thrice a week when the medication has to be dispensed. I have sat for days in DOTS centres and observed that the healthcare professional relies on the number on the box rather than the patient who stands in the room.

Second – stigma and censure. Arrive at the DOTS centre and be censured for getting the disease; don’t turn up and get censured for being careless and being a threat to the community. Be treated at arm’s distance by the healthcare professionals, despite the training they have received on how to take care of themselves.

Third – side-effects and suffering. Complain at your own risk, because no one’s going to listen. You’re going to be told this is to be expected and it won’t help to make a fuss. Bear it; you’ll settle in a while. But DON’T give up treatment because then you’re going to become drug-resistant and become a threat to all around you.

Medically illiterate, baffled at what’s happening to them, fearful of the erudite healthcare professionals who are so much more equipped to know what the patient wants or needs, and a feeling of utter despondency and inadequacy – this is the portrait of a TB patient under treatment. In the face of all this, what options does a patient have, but to run away, or ‘drop-out’?

There is presently a lot of buzz around patient-centred care. The buzz is welcome as it might just bring about the vital shift from the healthcare-setting-centred model that is currently in use. We might just see the onus shifting from the patient to the healthcare setting and the definition of defaulter shifting. The patient might just manage to come into the centre.

It is a definite sign that people, be they in healthcare settings, the level of policy makers or the patients, want change. That’s why the narrative is changing and there can only be good news around the corner. There is hope at last and we just might be sitting at the threshold of something positive.

Bharathi Ghanashyam

 

 

Written by JournalistsAgainstTB

June 23, 2017 at 3:00 pm

Posted in TB and Media

The media is but a mirror

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I watch or read the news for an hour every day and often feel indignant as I witness slanging matches peppered with violent and abusive language on different media platforms – almost inevitably on issues that do not impact the lives of the multitudes of my country.  And I continue to hope that someday the media will debate the real issues that challenge India – hunger, poverty, homelessness and disease. These issues don’t challenge just a small percentage; they impact millions like Rameshiya and Dulari and their families…

For Rameshiya and Dulari (who live in a remote village in Chattisgarh)* and who I met a few years ago, while on a field trip, it was normal to wonder where their next meal was coming from. From the public distribution system (PDS), they got some amount of raw rice at highly subsidised rates. And as long as this rice lasted, they ate. But they ate just rice, morning, noon and night.  If they were lucky they got to eat some vegetables from their backyard a few times a week and some dal (lentils) about twice a MONTH.

As I sat with Rameshiya who looked way older than her (estimated) 45 years and asked her what she and her family ate everyday, she looked away and I instinctively sensed that pride prevented her from telling me.  Her son (19), told me that they ate rice.  I urged him to go on.  He repeated that they ate rice.  On prompting again, he said that’s all they ate and if they were lucky, they ate a little chutney with that.  And then he went on to say that they didn’t have a choice of how much they wanted to eat.  They had to share whatever there was, regardless of whether each portion was a mere handful.

Both families had members who were suffering from TB and were being treated. It was debatable whether they would complete their treatment considering that they were hungry more often than not and might not have been able to withstand the side-effects. They would then be branded ‘defaulters’ who were on the rampage spreading DR – TB in the country.

All this, while our politicians, with alarming frequency and lack of responsibility flaunt non-issues, polarize the country on religious lines, and insidiously get communities to focus on the wrong issues.  It’s enough now! Let’s get back on track. There’s proof that poverty and under-nutrition are unchecked issues and need urgent attention; there’s proof that without addressing these, progress is unattainable. We can’t afford delays – here’s the proof as beautifully captured by Chapal Mehra:

http://www.huffingtonpost.in/chapal-mehra/india-cannot-eliminate-tb-by-2025-without-also-tackling-poverty_a_22116851/

Let’s move away from green and saffron and cows and other trivia and look at the real issues. The media is a mirror and cannot then help but reflect the debates and the commitment on the part of the powers that be. And let’s  force ACTION!

*Information was collected a few years ago.

Bharathi Ghanashyam

 

 

Written by JournalistsAgainstTB

June 10, 2017 at 11:59 am

Posted in TB and Media

A slice of life – unimagined!

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I finally reached Arandonk… I had very precise instructions from my friend Roeland Scholtalbers of the Insititute of Tropical Medicine (where I was spending three weeks learning how to write …

Source: A slice of life – unimagined!

Written by JournalistsAgainstTB

January 16, 2017 at 6:03 pm

Posted in TB and Media

A life set on hold for two years…The wait was worth it…

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Two years ago…

A’s father holds a picture of a vibrantly lovely girl in his hand and looks at it with a tinge of sadness in his eyes. The girl sitting opposite him is the same, but she is now merely a shadow of what she was in the picture.  A (24) is so wasted that the several layers of woolens she wears hang loosely on her frame. Her bones are thinly covered by skin and she completely signifies the proverbial ‘skin and bone’ simile. Her speech is interrupted by pauses, as she becomes short of breath very often. When she changes position, she grimaces because each limb of her body protests with pain.She doesn’t smile as radiantly, or so often anymore.  She has been diagnosed with drug resistant tuberculosis and has been on DOTS Plus for two months…

Today…

31.12.2016

Two years is a long time to set life on hold, as A has done. Over the last two years, while most of us were living lives full of change and activity, achievements and excitement and maybe trials and tribulations too, for this young girl from a small town of Karnataka in Southern India, time had stood still. Her days and nights stretched endlessly before her and she couldn’t quite see the road ahead because she was living in a hazy world of pain, suffering and hopelessness.

Her days seemed endlessly monotonous. Day after day, for over two years, she woke up to pain, toxic medication, suffering and side-effects. When she slept, she wasn’t sure of a night’s rest as she woke up most nights wanting to douse herself with cold water, so harsh were the side-effects of the medication she was taking for MDR-TB. “My body feels like it is on fire,” she said to me more than once. She was often on the brink and wanted to give up on the treatment and take her chances with death. But her parents, her ORW-turned-friend Nagarathna (who was always on call, be it day or night), and a few trusted persons she reached out to, ensured that every time she felt like giving up, she actually persevered.

One step at a time, slowly, aided a great deal by her own will to overcome, she gritted her teeth and went on… Till the day her doctor announced she was cured. It had been two years and a few months. She had gone from a mere 29 kgs to her present 40.5 kgs. Her appetite had picked up and suddenly, she found she wasn’t feeling so hopeless anymore.

‘A’ was bubbling over with happiness when I called to seek her permission to wish my readers through her story! She shared with me that she had begun working again, albeit from home; was riding her scooter; giving tuition from home and frenetically making up for lost time. She was eager that I appeal to others like her not to lost hope and to stay with treatment, however difficult it was as the end would be happy! She has also assured me that she will be available to speak to people who wish to know what she went through and how she overcame.She had access to and adopted the 4 point TB cure mantra!

TB Poster final_Page_2

Developed with support from Lilly MDR-TB Partnership

WISH YOU ALL A HAPPY AND HEALTHY YEAR AHEAD!!

FROM ‘A’, A YOUNG 26-YEAR OLD, WHO HAS COME BACK TO LIVE LIFE WITH RENEWED VIGOUR AFTER BEING ON MDR-TB MEDICATION FOR OVER TWO YEARS!

If you wish to know more about A, mail me: bharathiksg@gmail.com

Bharathi Ghanashyam

 

Written by JournalistsAgainstTB

December 30, 2016 at 3:27 pm

Posted in TB and Media

You give us life – now teach us how to die – an open letter to the medical fraternity

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Dear Members of the Medical Fraternity,

Greetings from JATB and the GR Initiative!

signature-3

This is the last post of this year from JATB. As the year draws to a close, as part of my (a lay person’s) commitment to preventive health I want to lay a few questions and dilemmas before the medical fraternity.

My questions have a context. I remember the day his oncologist called me aside, and with a smile on his face (he was probably too pained to do anything else), told me that my brother had terminal stage lung cancer, and was not expected to live beyond six months or so. And then he left. Just like that, leaving me to cope with this news. My brother was in his room, but ten steps away, and I did not know how to go back inside and tell him what the doctor had said.  Instead, I went into the lawns of the hospital, alone, and (scarcely worried about who was looking) loudly uttered the word death several times,  till it sat easily on my tongue. Next, I said to myself (loudly again), that my brother was dying. I said this again and again, till it did not cause my heart to flutter and breath to come in short gasps. Because I knew surrender was inevitable. And then, I walked into my brother’s room and lied to him about what the doctor had said. When in actual fact, he was the one person who had a right to know the truth.

Life and health, or the lack of it are not like riches or privileges or position. These do not discriminate or favour but a few. Every living being born on this earth ages by the minute, by the second, and the millisecond. And every living being dies. Death is the only non-negotiable truth in the lives of living beings. All else is negotiable. And yet, this is the subject we run away from, all the time. Death is discussed in hushed tones, or not at all, even by the medical fraternity.

When my brother was steadily progressing towards what is the logical end to every life, we realized how under-prepared we were, and how hard we all, his team of doctors included, were refusing to accept the inevitable. I ask now, is it not the duty of the medical fraternity to teach us lay persons how to ‘learn to die’ in a sense? Was it enough for them to tell us, those around him, that he was dying and then continue to try to make him live? Should they not have prepared my brother for a smooth exit? After all, it is only they who knew the extent of the truth. Only they knew how close he was to the brink.

It is doctors who know to interpret reports, determine how good or poor the prognosis is going to be, and how near the end is. And in reality, it is they, who most often are in denial. I have reason to believe they go into denial when faced with a case they know is hopeless. And I empathise with them. It can’t be easy to walk into the room of a person who is fully conscious, and yet, dying. It can’t be easy to look into hopeful eyes that are waiting for reassurance and throw up empty hands that have nothing to offer that can justify that hope. So they stopped walking in when they knew he was going. We only had junior interns or on-the-verge of retirement doctors who came to his room. His questions got only vague replies and every doctor who spoke to him only hedged and made him even more anxious.

But is it that impossible? Is it so impossible to face this spectre of death? For a moment, can science not step back and humanities take over? Can there not be a marriage of the two? After all death is an enemy that has never been defeated. EVER. It has, on the other hand, defeated kings and conquerors, rich and poor, young and old, wise and otherwise. No one can claim victory against this force. So why is the medical fraternity constantly at odds with this force? Cannot doctors be ‘taught to teach about death’? Has science become so arrogant about its own achievements and invincibility that it has forgotten how to surrender to an adversary as strong as death?

This is not a rant; above all it is not an attempt to lay blame on the doctors who treated my brother. On the other hand, I am grateful to them for making him as comfortable as they could. I even saw tears lurking in the eyes of his oncologist on the last day that he had the courage to walk into his room, days before my brother died.

Then what am I attempting to say? I’m probably appealing that death be made a part of the process of healthcare itself. I’m probably asking that death be a part of discussions on life and life-giving processes. And that we, the affected, be part of these discussions. I’m probably asking that doctors be put through short capsules in medical college itself which teaches them that they are going to confront death at every corner and they need to be able to face it. They need to be the bridge between death and the dying or the survivors left by the dying.

Will these questions seem earth-shaking and new to the medical fraternity? Not in the bit I know. Then what will be new? Probably the demand that we stop running away from it and look death in the eye and say, come get me, I’m ready. My doctors have readied me to face you.

Yours as always,

Bharathi Ghanashyam (purged for ever from questions that were dying to be asked)

P.S. If I asked this during the festive season, there is a reason. Death, I reiterate is something to be celebrated, and not dreaded or feared, or shied away from. The day we do that, we’ll stop being scared of death! Who better to help society do that, than the medical fraternity?

Merry Christmas and a Happy New Year!

Written by JournalistsAgainstTB

December 22, 2016 at 1:46 pm

Posted in TB and Media

TB and CSR – a perspective from Mumbai Mission for Tuberculosis (TB) Control, India

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Dr Daksha Shah, TB Officer, TB Control Programme, Mumbai Mission for TB Control, met JATB on the sidelines of the 47th Union World Conference for Lung Health. She gave valuable insights into the ef…

Source: TB and CSR – a perspective from Mumbai Mission for Tuberculosis (TB) Control, India

Written by JournalistsAgainstTB

November 21, 2016 at 5:13 am

Posted in TB and Media

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