journalistsagainsttb

Fusing journalism and TB – telling the stories as they are

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

From the Ground – conviction and confidence

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Nagarathna Hiremath is an outreach worker from Ilkal town in Bagalkote District, Northern Karnataka, India. A diminutive figure, she is feisty enough to intimidate even the most stubborn TB patient into taking his/her medication.

I once accompany her to the home of a TB patient, who she fears is about to give up on medication. We walk through the lanes of Ilkal town, a town of weavers, and home to the famed Ilkal sarees. Every home buzzes with activity and I am distracted enough to want to stop and step into one of the houses because I see weavers working magic on their looms and the vivid coloured yarns taking shape rapidly into gorgeous sarees. They entice me, calling out to me to go and pick them up. But Nagarathna is untouched. She strides purposefully towards the patient’s house – a hut actually.

We have to bend double to be able to enter. Once inside, she doesn’t even stop to greet the patient’s wife. Going into the inner room, she reaches up and searches between the tiles and rafters – in a few seconds, she finds a strip of medication and brings it out and shows it to the patient’s wife, proving to her that her husband has missed some doses. The wife looks away sheepishly. A counselling session follows where Nagarathna patiently explains the consequences of giving up TB medication, and promises to come back and counsel the patient who is away at work, despite being too weak – it’s a question of survival, his wife explains.

Some months later I hear that the patient has recovered and is happy he followed Nagarathna’s advice. She says, “It’s not difficult to persuade them to take their medication. They want to live and be happy. They just want to know someone cares about their fears and want to be reassured.” But enough of me. Listen to her… In her own voice – which says to every patient, YOU CAN. YOU WILL…

About SHOPS

Nagarathna was a part of a programme jointly implemented by Karnataka Health Promotion Trust (KHPT) and Abt Associates. Known as the SHOPS TB initiative, the USAID-funded project was implemented in Karnataka in 2013-15 to engage the private sector. The use of innovative methods – administrative support for busy doctors to notify, a telephone-based TB Careline and patient support groups ensured that treatment adherence among private patients was at par with the those under RNTCP.

Anyone wishing to know more about Nagarathna’s work and experiences, can mail me – bharathiksg@gmail.com

Video editing: Jasvinder Sehgal, Member, JATB.

Bharathi Ghanashyam

Written by JournalistsAgainstTB

July 2, 2017 at 7:31 am

Catching the ‘blood seeds’

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The place: A village in Northern Karnataka, India, some years ago…

It was a typical Indian village marked by labyrinthine rough-hewn paths, lime-washed houses with tiled roofs, a central temple and little shops with shampoos, snacks and fairness creams in affordable pouches, hanging from strings. The little shops also offered mobile recharges. Swachchh Bharat was yet to be rolled out so toilets were conspicuous by their absence.

I met him in the Dalit quarter of the village. I don’t know if he is still alive but his image is vividly etched in my memory like a portrait cut in stone. He was an unemployed carpenter, too unwell to work, as he was suffering from TB. He sat outside his house on a dirty stone slab. An open sewer flowed past his house, leaving behind stench and hordes of flies. Knees drawn up tightly, unmindful that his trouser buttons had come undone, his eyes were restless, but his body drooped with fatigue. His skin had an unhealthy pallor to it.  Given to excessive drinking, he was also suffering from withdrawal and depression as the local liquor shack owner had denied him alcohol because of his inability to pay. He had not taken his medication for days but the bigger problem he was grappling with was his inability to access alcohol.

The story playing out in his one-room, windowless dwelling behind him was even more dramatic. Deserted by his wife and children, it was his aged mother who cared for him. She was blowing life into some twigs she had collected, to cook a meagre evening meal for her son. This was from food materials she had borrowed from neighbours. She was unable to buy food as there was no money in the house. The house had not been cleaned for days and litter lay all around. She told me tearfully that her son had no wish to live and was refusing medication for his TB.

To sum up this story, a patient was about to give up on medication; he was not only in danger of losing his own life, he was capable of spreading his infection to his mother and several others around him. The causes for his present state of  despondency and lack of will to live were many. But he was being treated only for TB.

There had been no attempt on the part of the system to address his depression, alcohol dependence or lack of will to live. Doing this would not only have helped him, it would have spared the others who came in contact with him. It would have prevented the ‘blood seeds’ from falling to the ground.

1=10=100=1000=10000

The Hindu epics are full of sub-plots and stories. Among them are the stories of rakshasas (demons) who shed rakta-bijas, or blood seeds. These rakshasas had the ability to reproduce several replicas of themselves out of every drop of blood that spilled out of them when the heroes attempted to vanquish them. The stories also talk of how ways were found to catch the drops of blood before they fell to the ground so as to prevent more rakshasas from being born.

Contrast this with TB. Each patient is said to be capable of infecting at least 10 others, before s/he becomes non-infectious. That makes for a mathematical nightmare if one were to consider the number of people among us who are in the infectious phase. The reference to rakshasas here is NOT to the patients but to TB and the ‘blood seeds’ reference is to the bacilli residing in them.

TB control – looking at it symptomatically

Given this situation, what do we do? We go at TB symptomatically. We ‘treat’ TB. We spend millions of dollars on diagnostics and medication and preventive vaccinations. I need to quickly say, this is NECESSARY. Curative services for TB are an imperative. But how do we kill the rakta bijas? What is prevention in the context of TB? It is not, and I repeat, it is NOT only vaccines. It is much, much more.

It is about creating an environment that is hostile to the spread of TB. The presence of TB in a society is an indication that that society has failed to achieve any or all development goals. It is undoubtedly an indication that hunger, housing, sanitation, employment, poverty and other indicators of development are wanting. There are enough examples to prove that low-burden countries have all these basic amenities in place. And this means that TB did not find willing hosts to live with in these countries.

At ‘Time to end TB – a new path to defeating the world’s oldest epidemic’ a meeting held on 20&21 June 2017, at the Wilton Park, West Sussex, United Kingdom, several rounds of deliberations were held on multi-sectoral collaborations and ways to enable the achievement of the SDGs. These deliberations, were they to find action, would have a direct bearing on TB control.

The eradication of hunger, while not directly related to TB, would result in healthier people with stronger immune systems; the creation of better housing would result in lesser transmissions of TB; good sanitation, assured employment and a more predictable way of life would sure result in healthier people, less vulnerable of contracting TB.

It would then mean that the ‘blood seeds’ are caught before they fall to the ground and we would have defeated the numbers – finally.

Bharathi Ghanashyam

 

 

Written by JournalistsAgainstTB

June 25, 2017 at 2:43 pm

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

Where are the doctors?

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4 April 2017

As the buzz around World TB Day settles, it’s time to introspect. What did we do which was different from all other special days? Social media was humming with people reminding each other that TB was a killer, TB needed to go away and TB was needlessly still around when it was so easy to eradicate it.

There were, thankfully, survivors coming out and narrating their stories of struggle with the disease and how they overcame it. We also actually saw pictures of celebrations and marches around the fight of good over evil (TB). New slogans have been rolled out and we’re probably finally in campaign mode. Good. It shows we’ve moved a great distance from where we were a few years ago when TB was good for a few stray editorials and drab administration-driven ‘functions’ that did some lip-service and then it was back to business as usual.

Where were the doctors?

There was however, one thing that did NOT change. Where were the doctors? Let’s face it. We can go blue in the face trying to apply the HIV advocacy template to TB, bring survivors to the fore to speak up for their rights, as they need to. But till the doctors speak, till the doctors act and till the doctors pledge to join the fight, we’re getting nowhere – make no mistake. TB is a doctor-driven disease; unlike HIV, it is NOT merely a medical condition, that can be controlled by taking lifelong medication. It needs the constant monitoring, commitment and skills of a medical professional to cure it. It needs to be addressed with aggression.

It doesn’t matter if a cured TB patient stays with the cause or not. In fact it is a happy state if s/he can go back to life like nothing happened. But if doctors don’t stay committed we have a non-starter in the fight against TB.

Doctors are the missing link, and so were they, this TB Day too. I did not hear a doctor, see a doctor or feel the presence of one in any of the many posts, editorials or any other efforts to observe the special day. I did not hear one impassioned appeal or pledge.

No, I err. I did hear a lone voice, screaming out for help and cautioning us against complacency.

Dr Zarir Udwadia, you were right there, sounding the alarm, cautioning us to wake up. We, each of us, and all us in fact are in danger in one way or another. If I’m diabetic, my vulnerabilities are greater, if I’m a senior citizen, my chances of getting TB are stronger, if I have any kind of compromised immunity, I’m right there for TB to hack away at. If I’m poor, if I’m hungry, if I’m just standing around in the presence of someone who has TB I can get it. You reminded us Zarir. You reminded us of the ticking time bomb amidst us. And yet, your fraternity seemed not to care.

But we have to thank you for your commitment. I do hope you lead the battle with the same vigour and passion and inspire your ilk. I was greatly inspired by your TED talk and reproduce it here. More power to you.

Bharathi Ghanashyam

Written by JournalistsAgainstTB

April 4, 2017 at 3:39 pm

World TB Day – some learnings, some thoughts…

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24 March 2017

As yet another World TB Day comes to an end in parts of the world, and has just begun in yet other parts, there is much to be happy about. JATB has been spotlighting TB for the past six years, sometimes with a frenetic pace, sometimes sluggishly, and sometimes very silently, working with communities, but choosing not to talk about it, respecting their privacy.

The change I see is down the years is heartening…

Then– I remember the desolateness that existed in the world of TB a few years ago. No one spoke about it; very few really knew what it was beyond the fact that it was a terrible disease and the images were even more distressing. Tragic tales with the protagonists coughing up blood into white handkerchiefs, lovers waiting to part from their dying partners, poverty stricken families unable to provide treatment for their loved ones dying from TB – movies and books had reinforced these images so often in our minds that TB had almost moved from being a preventable and curable disease to becoming a tragic romantic fantasy. Authors often resorted to it to move their stories forward. Every story worth its salt had a character either suffering, or dying from it.

Now – The story has moved on thankfully, the narrative has been altered from the tragic to the hopeful and for this, the TB sector has to be lauded. The champions who believed the story could be changed has succeeded in doing so. We have much to cheer about. At least the images have received a makeover. Things can only get better now on. Because when you bring a problem on to the table for all to see, change happens. When the affected begin to be seen sans blinkers and sans drama, the world comes together to act.

But – a lot remains to be done. I remember a conference I once attended where several sessions were devoted to patient-centred care. At the conference, the concept seemed abstruse and abstract and difficult to do. I have been looking around ever since. How much of it is jargon and how much true? I had no answers till a few days ago.

I got my answers on what patient-centred care means when a loved one fell ill, not with TB but with a much less harmless, but nonetheless severe attack of fever, cough and cold. The attendant issues were loss of appetite, fatigue, and the myriad other symptoms. The person is also diabetic and hypertensive, has mild heart issues (of the kind I don’t understand) and is getting on in years. This means he is already on medication for all of this and then, he had to take medication for his current health issue. That’s a LOT of pills!

As this story is not about him, but about patient-centred care, let’s consider what needed to be done to put him in the centre. Loss of appetite meant he was not eating well. This meant his diabetic medication had to be adjusted to ensure it would not cause complications for him considering that his  food intake had lessened, in fact come to almost nothing.Would other adjustments not have to be made to ensure his recovery was quick and free of risks? Who would do this? Can a doctor put his/her hand on his/her heart and declare they have the time and inclination to do this for all patients they are caring for? Without intimidating the patient or being impatient him/her? I was lucky enough to find a very patient doctor friend Dr Aditi Krishnamurthy, who helped me to manage his condition and happy to say he is recovering well.

Let’s for a moment assume there was a TB patient in his place. Having to ingest TB medication + diabetic + hypertension medication + medication for his current problem – what would he go through? How would his already weakened body take this onslaught? I read Being Mortal by Dr Atul Gawande, where he says that any person who needs to take more than six pills a day becomes fragile. So given the person is already weakened, would s/he out of frustration give up on some medication and only take some, solely depending on his/her own, probably faulty wisdom and judgment? Would s/he then be a defaulter on one or other illness? Would we then blame him/her for being irresponsible and lump him with the bad name of spreading MDR-TB in case he decided to give up on TB medication? Have we truly understood the meaning of patient-centred care and put it into action, until we have taken care of this, crucial link?

I haven’t heard much from doctors on this or any other World TB Day. They are the vital stakeholders that need to reaffirm their commitment to not only TB control but to PATIENTS and bring them back to the centre. I laud Dr Zarir Udwadia for being the sole voice that has come forth and issued the clarion call for a fight on TB. But before the fight becomes hackneyed, let’s bring the patient back to the centre. Without that, I doubt any health issue, least of all TB, can be truly brought under control.

To end the piece, a lovely piece of writing on default by Late Dr Annik Roullion:

“To   default is the natural reaction of normal, sensible people; the  person who continues to swallow drugs or have injections with complete regularity in the absence of encouragement and help from others is the abnormal one.”

Yours in hope,

Bharathi Ghanashyam

Written by JournalistsAgainstTB

March 24, 2017 at 4:20 pm

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