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Pleas from the ground

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The timing is very ironic and it saddens me. When the world has gathered today at the UNGA for Journalists against TBthe first ever UN General Assembly High-Level Meeting on the fight against tuberculosis to accelerate efforts in ending TB and reach all affected people with prevention and care, I got this appeal from the ground. It came from a frontline worker who is engaged full-time in helping TB patients complete their course of treatment and get back to normalcy.

This frontline worker (I am keeping this gender-neutral in order to protect the identity of the person) told me about three patients, who are hopeless to the extreme and who might just end their lives. Hailing from low-income families, living in a remote small-town of India, they are the sole bread-winners of their families. They

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Photo taken on the field by the author. Used here for representative only.

are depressed, on treatment for TB and one of them, who is on treatment for DR TB has infected several others in his family, many of them children.

 

So, what’s the objective of doing this piece when expectations and hopes are running high at the UNHLM? It is a plea from the ground but it is not based on facts and figures. I don’t have any to quote. I just have an anecdotal narrative as told to me by the frontline worker. But it is also true that but for this person, the incidents would not have come to light.

Some questions beg answers and hopefully Calls to Action at the meeting. The patients are obviously depressed. Did depression bring on TB in these patients? Did TB and its implications on their lives make the patients hopeless enough to give up treatment and progress to DR TB? Are we sure the problem will be fully addressed unless these aspects are taken into account? Are they getting the best treatment possible? I’m not talking drugs for TB alone. When doctors can see depression in a patient, does it not make sense to treat them for it? I am told the nutritional support promised to them by the Government of India reaches them well after the treatment period is over. What use is support when it is no longer needed? Who is to address these gaps? Who is accountable?

I speak for the young man who has infected all the children of his family who are now on treatment. He feels his life has no purpose. Who can convince him that is not true? It is undoubtedly the frontline worker because he trusts this person as do others like him. So why is this frontline worker not at the UNHLM to direct a spotlight on the learnings the person holds, which can make a vital difference to people on the verge?

This frontline army we have on the ground can reveal the TB situation as it is on the ground. It is they who can show the warts, the blemishes, the gaps and help design the solutions. They can add strength to the case for support. They need to become a part of the conversations around TB in India. It is still not late. Let’s get them in.

That is my ask from the UNHLM so that these young patients who are on the brink can be put on their feet again. India demands this, the annonymous sufferers of India deserve this and people at the UNHLM, who have worked tirelessly to bring TB to the attention of the world can also add this to the asks. I hope that a lot of good comes out of the UNHLM.

Bharathi Ghanashyam

The views expressed here are mine alone.

 

Written by JournalistsAgainstTB

September 26, 2018 at 4:35 pm

Posted in TB and Media

India you go! You have signed up to yet another declaration!

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The Hon’ble Minister of Health and Family Welfare,

Government of India

Dear Dr Nadda,

We the people of India cannot thank you enough for attending the ‘First WHO Global Ministerial Conference – Ending Tuberculosis in the sustainable development era: a multi-sectoral response’ and reiterating your commitment to TB elimination in India by 2025.

I was particularly heartened by your strong  and decisive message at the conference. It gave us hope, particularly the messages you shared about advanced diagnostic facilities which will be made available at district levels. It heartened me because even while you were making a difference on the world stage, a few of us were trying to help a young, too young MDR-TB survivor who had relapsed. She lives in Ilkal, a small town of Northern Karnataka and had no way of knowing her real drug resistance status where she lived, because of lack of testing facilities.

We needed to transport her sputum to Mumbai because she was too ill to travel to give the sample herself. Through  very generous responses and directions from Dr Zarir Udwadia, Dr Camilla Roderigues, and their teams from Hinduja Hospital, Mumbai, we did transport the sputum and this young girl is awaiting next steps now. We used very local techniques, mobile phones, emails and WhatsApp to transmit messages and accomplished the job. We hope her story will now find a happy ending.

You will be happy to know that it is the private sector that stepped in to help (the same private sector which is often damned), and the public healthcare sector which did the right things by her too, showing that right from the very grassroots (which included an outreach worker, a government doctor and myriad other people who extended hands of support), across sectors, and right up to the very high levels at which you were speaking, the commitment was firm and this can translate to good results. I saw the same multi-sectoral response here, which you were all discussing in Moscow.

This shows that India is ready and waiting to give a good fight back to TB, and what’s more, defeat it. Ilkal is a very small town, and if there is this kind of strong awareness and will to fight here, then extrapolating that can really mean wonderful things for us.

This alone is not enough – a lot rests on you now

Let me now begin grumbling. What did you mean Dr Nadda when you said that the three pillars of TB elimination in India were Aadhaar, Jan Dhan and Nikshay (as reported by Indian Express)? I can understand the third, but pray what do the first two have to do with TB elimination? Surely you being a doctor yourself know that TB is as tough a nut to crack as it is easy to prevent. It could be as simple as providing good living, food and other requisites and you can scare it away. On the other hand, it is difficult to control as you only have to breathe to get the bacilli into you and given the poor nutritional and immunity status among the majority in India, TB has a free run in the country.

Oh yes! I think you meant that if people have Aadhaar cards, they get their subsidized grains and get to eat and don’t die (ref: recent hunger deaths in Jharkhand) and then they can have the resistance to fight TB. And I think you also meant that having Aadhaar cards meant they could get their medication and be saved from dying. Or that illegal immigrants and other unfortunates who got TB could be detected and thrown out God knows where and TB rates would come down. I understand now. But did you think of what it meant to deny facilities simply on the basis of lack of Aadhaar cards? No, I’m sure you didn’t because you were expected to make ‘political’ commitments and you were doing that.

And what about Jan Dhan? Don’t we all know that having a bank account doesn’t translate into having money in it? And pray how will Jan Dhan help? Isn’t TB medication free? Or are we (God Forbid!) planning direct fund transfers for TB medication too? Kindly educate me on this.

Sir, I request you – do not complicate issues. Kindly speak to grassroots stakeholders before you make sweeping changes to the current scenario. Just when we are poised to win this war, do not bring in counter-productive weapons and force us to push back. Each person in this sector has fought hard and long to come this far. Don’t force us to step back now. Let us #stepupforTB and not the other way!

We have already signed up for too many commitments and declarations and then gone ahead and thrown them into dusty archives. Don’t let the Moscow Declaration go the same way! Kindly stand by it!

Yours in support and solidarity of those who need your help,

Bharathi Ghanashyam

Views expressed here are solely of the author.

 

Written by JournalistsAgainstTB

November 18, 2017 at 12:35 pm

Posted in TB and Media

What’s my story?

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JATB @ ECTMIH2017  – Episode 1 – 18 October 2017DLtNzC_X0AE53ub.jpg large

JATB participated in a debate moderated by Andrew Jack, Financial Times at ECTMIH2017, held in Antwerp, Belgium on 18 October 2017. The topic was actually a question – Are journalists and scientists failing global health?

As part of the debate, I was asked what health story I would most like to report on. I loved the question as it gave me the opportunity to give a mini lecture to the audience!

My answer was as much my own wish list, as it was an appeal to the audience present, who were researchers, NGO leaders and scientists. They held the real stories; they were connected to people. They held the richness of experience that I as a journalist wanted to get a glimpse of. I wanted to be a part of their successes, their frustrations, their joys and their triumphs. I wanted to see the people they worked with and feel the joy of patients when they were told they were now cured, before reporting on them. Equally I also wanted to understand their roadblocks and tell the world about them, so they could be cleared.

Press releases, not conversations

And yet, what do journalists get?  We are approached when the stories are over, the dramatic twists and turns, the huddling together, the sharing and caring and the tough journey that patients undertook along with the community working so hard to change their lives has ended. We get press releases – bland 500 word press releases that are sterile and devoid of narratives that tell the real stories. It’s little wonder that press releases get sub-optimum attention, because they’ve completely left out the STORY!

Press releases have their place in the world. They serve to inform people of news they are hungry to hear – successful trials on drugs that can now bring relief to hundreds of people waiting for relief, or vaccines that won’t even allow people to fall sick. But press releases do not satisfy all the time. I want to get into the gut of a story; I want to be part of the journey however tough it is and I want to then tell those stories.

Do journalists really miss the story?

If it appears, as it often does, that journalists are failing the real causes that matter, in this case, global health, it is because we were never made a part of the problem. We are always perceived as the solution. I ask – how can the media solve anything, when it never knew the problem in the first place? How can the media report on conversations of which it was never a part?

I have conflicts in my mind which I want resolved before I write about them with any conviction or credibility. What is global health for instance? The most commonly accepted definition is this – “Global health is the health of populations in the global context; it has been defined as “the area of study, research and practice that places a priority on improving health and achieving equity in health for all people worldwide.” If this were true, then why do inequities exist? Why does health mean one thing in a developed country and another in a developing country? What is the world doing about these inequities, besides talking about them and issuing declarations, making pledges and promises which very often do not go to fulfillment? How many journalists feel good about reporting unchanging situations story after story and creating editorial and reader fatigue?

I want to ask hard questions

As a journalist, who often dons the role of an activist, I want to often ask after reporting on an issue that has remained unchanged for decades. Why are governments not held accountable? I want to report a story of a country that has dallied on cutting red-tape and sanctioning the use of a new drug that holds promise for thousands of patients, being put on the carpet by the world community.  I want to write about sanctions being imposed against a country for not enabling access to basic healthcare for all, despite being supported and funded for it. If we can resort to sanctions out of paranoia about nuclear wars, why can’t we do it for health? Let us remember that preventable and curable diseases are killing more people than a nuclear war will ever do. Let us remember that global ill-health can cause more danger than global health. Even countries that have achieved health for all, can quickly become vulnerable, owing to the seamless world we live in. Centres of excellence never helped, unless their successes are quickly upscaled and made the order of life.

The story I want to report

I want to report that the circle of life – birth, life and death, which has equity and affects all of us, has now become equal for all on earth in the true sense. When we achieve that, I hope to be around to report it. That’s my story!

Bharathi Ghanashyam

 

 

Written by JournalistsAgainstTB

October 27, 2017 at 4:52 pm

Posted in TB and Media

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

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