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18.11.2017

The Moscow Declaration to End TB

The Global Ministerial Conference on Ending TB in the Sustainable Development Era  held in Moscow has just ended. According to reports, 1000 participants, 100 member states and 75 Health Ministers attended the conference, signalling that TB had better watch out now. The world was geared up to fight and defeat it. “Today marks a critical landmark in the fight to end TB,” said Dr Tedros Adhanom Ghebreyesu, WHO Director-General. “It signals a long overdue global commitment to stop the death and suffering caused by this ancient killer.”

The conference ended with the Moscow Declaration to End TB. This is a promise to increase multi-sectoral action as well as track progress, and build accountability. It will also inform the first UN General Assembly High-Level Meeting on TB in 2018, which will seek further commitments from heads of state. These developments can spell a whole lot of good for the fight against TB.

The world of TB has traditionally been a desolate, orphaned one. Having written about it for over a decade, I have seen unprecedented efforts in the recent years to tackle an infection that is both preventable and curable, and yet, creates havoc and is the world’s leading infectious killer. This can only augur well for lives waiting to be saved.

Read JATB’s India specific message here

15.07.2017

Wilton Park series – 4

Mr Modi, this is a personal appeal from JATB – excerpt from an article in Deccan Herald…

“…unlike other developmental problems, the problem of TB cannot be solved ground up. It needs intervention from the highest levels. It needs intervention from you because it needs vision to see that while TB can be cured, for every person cured, many more are already waiting in line, because the environment around allows for TB to spread unchecked.”

Not just medication

“Sir, we have to attack this disease with more than just medication. Unless you demand accountability on where we are with the various SDGs, and demand they be speeded up, unless you demand that all sectors work together to create an envi­ronment in India that is hostile to the spread of TB, we are going to lose sight of your vision.

The world today looks towards India for many things positive. We are emerging as a role model and a super power. The world is looking to India with hope for direction on TB as well, because it knows that we can make a difference. We are a high burden country and if we get it under control, the other countries cannot but fall in line…”

Read the full article here http://www.deccanherald.com/content/622705/enabling-effective-tb-control.html

Bharathi Ghanashyam

2.07.2017

Wilton Park series – 3

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, there were deliberations about community involvement and ways to engage communities in TB Control. Here is a ground-up example of successful community involvement. It’s the story of Nagarathna Hiremath, an outreach worker whose mission in life it is to ensure patients complete TB treatment once they begin it. Read on and hear her – in her own voice: https://journalistsagainsttb.org/2017/07/02/from-the-ground-conviction-and-confidence/

25.06.2017

The Wilton Park series – 2

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. Read Catching the blood seeds

24.06.2017

JATB was present at ‘Time to end TB – a new path to defeating the world’s oldest epidemic’ held on 20&21 June 2017, at Wilton Park, a historic venue and an executive agency of the UK Foreign and Commonwealth Office.  The deliberations were frank, fair and inclusive. JATB will shortly post a report capturing the essence of the meeting. Till then, do read https://journalistsagainsttb.org/2017/06/23/the-draconian-world-of-tb/

15.06.2017

The editorial in Deccan Herald today says, “The sharp increase in the number of patients diagnosed with tuberculosis (TB) in Karnataka is a matter of serious concern. According to the Revised National Tuberculosis Control Programme (RNTCP), 60,751 patients were diagnosed with TB in the state in 2016, up from 49,396 in 2015. This is a 23% increase in new cases of tuberculosis over a year. Worryingly, at least 900 of these cases were found to be of the multi-drug resistant tuberculosis (MDR-TB) variety, a form of this disease that is resist­ant to treatment. The number of cases of MDR-TB is rising rapidly as well. In 2011, Karnataka was reported to have had only 33 cases of MDR-TB. Clearly, the state has a giant public health concern on its hands.”

In this context, it becomes doubly important to scale up on the use of new drugs for TB. But we seem to be stuck at the foreword. Let’s move this story forward now and rapidly. Before MDR-TB wins the battle. Let us not have to say TB Jeetega Desh Harega instead of the other way around! JATB’s piece in Express Pharma places focus on the issue!

11.06.2017

It’s time to reminisce! JATB is almost six years old and has survived the difficult 0-6 period! It’s going from strength to strength and has just been invited to participate in ‘Time to end TB – a new path to defeating the world’s oldest epidemic’ being held at Wilton Park, a historic venue and an executive agency of the UK Foreign and Commonwealth Office providing a global forum for strategic discussion. This meeting is by invitation only and JATB is grateful for the recognition accorded to it.

It’s also time to reinforce that JATB was begun to force an alternate space for showcasing issues around TB which did not find space in the mainstream media. It has been a struggle and never a cakewalk to keep alive a voluntary space such as this. I have often worked myself breathless and burnt the midnight oil just to keep this space going, even as I juggle a career, my home & family, and JATB.

But I will never let go. Because I have to keep the promise I made to a young woman in Orissa in 2002. She was dying of HIV related TB and I pledged I would do everything I could with my limited capabilities, to ensure less women like her died of avoidable causes. And today, when I look back, it is with the satisfaction that I have tried my best. I want to tell the soul of that young woman that I will continue to carry a message of hope on her behalf to every meeting I ever attend.

The full post of the story of JATB is here – on GR Initiative, the  blog I run in memory of my brother who died of cancer because that’s where stories of hope belong.

The summer of 2002

We noticed there were no young men in the village and asked about it. The coordinator said, “They all migrate for work in this season, leaving their wives, children and parents behind.”

Ironically, while the men were away, a meeting was being held in the panchayat hall to demonstrate the use of condoms to women. There were no men in the meeting and the women sat shyly, sarees drawn over their faces, as the woman volunteer held a ‘wooden demonstration model’ and nonchalantly drew a condom over it. None of the women even looked up!!

10.06.2017

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. Read more here:

24 March 2017

On World TB Day – Some thoughts. Read more: https://journalistsagainsttb.org/2017/03/24/world-tb-day-some-learnings-some-thoughts/

30.12.2016

As we move into 2017, and the last day of the year neatly falls into a weekend, I need to send these greetings out tonight!

This year, JATB conveys New Year greetings to its readers through the voice of A, a young 26-year old girl who has just triumphantly completed two full years of treatment of MDR-TB. She is cured and is almost back to the life she led before the extremely difficult period she has passed through. Read her story here:

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.

‘A’ followed the 4-point mantra for her cure!

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

22.12.2016

Season’s Greetings from JATB!

As a part of this last post for the year, I ask some questions that can be deemed uncomfortable, but with the hope that they will not!  Thanks for staying with us. Read on!

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?

20 November 2016

JATB is glad to present an audio interview with Dr Daksha Shah, TB Officer, Mumbai Mission for TB Control, recorded at the 47th Union World Conference on Lung Health, Liverpool, UK. The interview gives valuable insights on ways to engage corporates in TB control efforts, as well as raise funds for TB control through their CSR funds. Listen to the interview here.

https://journalistsagainsttb.org/2016/11/20/tb-and-csr-a-perspective-from-mumbai-mission-for-tuberculosis-tb-control-india/

Bharathi Ghanashyam

29 October 2016

It’s Diwali back home. I’m in Liverpool, but my thoughts are back home with my people, with all the persons I have met on the field during the countless fieldtrips I have undertaken and met the real people of India. This little post is dedicated to one such couple. Narsayya and his wife. Narsayya and his wife are the real people of India. The real aam admi. He was suffering from TB, and was on medication when I met him. He has two grown up children, both severely disabled and didn’t have a clue where his next meal would come from. And yet, he and his wife posed for my camera, their faces beaming.

This Diwali greeting goes out to him and the hundreds of others like him. I do hope Narsayya has recovered and is having a Happy Diwali.

HAPPY DIWALI FROM JATB!

28 October 2016

The 47th Union World Conference on Lung Health, Liverpool

JATB is fortunate to report from the Union Conference in Liverpool. The sessions have been rich, varied and holistic and addressed every area of lung health. India is firmly on the world map here too, but for all the wrong reasons. It’s been repeatedly spotlighted for the unhealthy numbers of TB it harbours. But I write this with hope – that the next time around we are applauded for progress and not mildly censured as we have been, this time around. Read more @ Mr Modi, I’m tempted to say, “We told you so.”

23.07.2016

It’s been a long time. But JATB hasn’t been idle. In the interim, with the support of Institute of Tropical Medicine, Antwerp, Belgium and Damien Foundation Bangladesh, JATB has produced a little booklet of patient stories. These are patients who have received 9 months of treatment for MDR-TB in Bangladesh, and have recovered and are leading happy, productive lives. This compilation was done in order to allow the patients to speak out. In this little collection of stories, they express themselves as only grassroots communities can – from the heart.

I set out to write these stories to make up for a gap I saw. While there were excellent papers that appealed to the academic and scientific community about the short, 9-month treatment regimen which was being so successfully implemented in Bangladesh, the patients were conspiciously missing. They were just numbers, albeit successful ones. The recent efforts in the TB sector to empower cured patients to come out and tell their stories emboldened me to attempt to speak to the beneficiaries of the 9-month regimen. And the results are there to see.

It needs no retelling here that if this regimen can be implemented across the world, patients who otherwise go through two years of treatment will gain the most. Challenges exist and as Dr Armand Van Deun, the architect of the 9-month regimen says, “The World Health Organization has recently endorsed the 9-month Bangladesh regimen, and even made it the recommended regimen for MDR-TB, something which is beyond our expectations. But it took over 20 years, and there are still too many restrictions for its use, the most important of these being initial drug resistance. The main challenge now for this regimen seems to be the ability to overcome high-level fluoroquinolone resistance reliably, without major modifications that would render the regimen complicated and difficult to use. This would not only save the life of the patient, but also avoid acquisition of additional important resistance and the creation of XDR.” It also needs no retelling that the world owes it to the people to make their lives after MDR-TB easier. Options are available. We need to find ways to use them.

I wish to share with my readers that my brother succumbed to lung cancer exactly a year ago, on this day. This compilation is written in his memory and as part of a voluntary initiative I have begun called the GR Initiative, which is dedicated to preventive health, particularly lung health. I thank Dr Armand Van Deun and his team at Institute of Tropical Medicine and Damien Foundation Bangladesh for giving me this opportunity.

The compilation is written in two halves. The first half addresses the scientific and academic community while the second half will relate to the lay reader as well. JATB hopes this compilation resonates with hope and the joy that accompanies good health.

Bharathi Ghanashyam

Read the compilation by clicking on the link below the picture

Nine months to rebirth

 

 

 

21.01.2016

As I am about to finish the second week of my scholarship at the Institute of Tropical Medicine, my understanding of TB has widened. This is oft quoted but bears repetition. Robert Koch said, “If the number of victims which a disease claims is the measure of its significance, then all diseases, particularly the most dreaded infectious diseases such as bubonic plague, Asiatic cholera etc, must rank far behind tuberculosis.” My renewed understanding also tells me that TB is not about the pill alone but is much, much more. An excerpt from Improve living and working conditions to wipe out TB published by Deccan Herald on 20.01.2016 and authored by me.

I am writing this blurb from Antwerp on a cold, bleak winter’s day. I am here on a three-week scholarship entitled Journalist in Residence with the Institute for Tropical Medicine. As I sit by the window in my room and look out, I see men, women and children alike, bustling about, clad to the hilt, walking energetically to work or school, or wherever else they are headed to. They are ordinary, work-a-day people and they are healthy and look secure. My mind wanders and I think of my own country. How many, on a day such as this, would really be equipped to come out of their houses, even those that have a roof? Would they have the right clothing to face such harsh weather conditions? Would they have spent the night under a warm roof, or under a cold, merciless winter night sky? How many of them froze to death during the night and didn’t even get the dignity of a decent funeral? How many of them progressed towards low immunity and would fall sick in the near future? How many woke up to see empty pots and pans and how many would eat a warm meal during the day? I don’t have the courage to face the answer. Because I know the answer would sadden me. And in the same breath, if we have to talk of TB control, then we are living in a world that does not exist.  Read more here.

When I founded JATB, little did I realise the impact it would have. Down the years, this blog has been welcomed as a much-needed initiative, and the TB sector has accepted me, a lay TB advocate as one among them and given me the satisfaction of having done something worthwhile. The credit goes entirely to the sector for the sponaneity with which they have welcomed me and helped me to advocate better. In the years that I have been writing on TB, several things have become better, e.g. there is a visible buzz around TB control, but several things have also remained unchanged. Over the past year, I have met at the very minimum, around 200 TB patients, heard out their stories, given them words of solace and come back frustrated that I could do little else. They came in all forms and sizes and avatars. There were very young children, even some infants; there were youth, on the threshold of the best years of their lives, but who were confined to their beds suffering from an avoidable condition; I met senior citizens who were on toxic medication, unable to bear the severity of the side-effects and stoic about the suffering they were going through. I also met TB patients from all age groups who could have recovered much faster, had they only had access to good nutrition. These were the poor and hungry, subjected to the utter indignity of having nothing to eat but the free medicines that had been doled out to them. They were too proud to say they didn’t have enough to eat and some dropped out of medication because the side-effects were too severe in the first place; compounded by hunger they were unbearable. They were then labelled drop-outs by insensitive healthcare professionals at their DOTS Centre and refused further help. What happened to the Right to Food? Talking of side-effects, dozens of these people I met, asked me with pained expressions on their faces, why no one had prepared them for it. What counselling did they receive? The answer to this is a resounding NONE! Who announces to a TB patient that s/he is diagnosed with TB? Is it a doctor? A nurse? It is a lab technician and I saw this happen. Impersonally, insensitively, the patient was prounouced positive for TB, handed medication, not from his/her own box but a general pool because it was too early to tell whether the patient would drop out and if s/he does, government resources get wasted. There was no effort whatsover tell the patient what to expect in the first few weeks of treatment. I met patients in small towns who go to the private healthcare sector. Contrary to what I expected, going by the news one reads about the unregulated practices in the private sector, what I encountered on the field was quite different. The basic problems of TB patients who sought care from the public, or private healthcare facilities (such as poverty or hunger) were the same, but they seemed quite satisfied with the care they had received from private doctors. This is not to say that the sector is not without its bad eggs, but we have to admit that there are an equal (if not more) number of bad eggs in the public healthcare sector too. I know that this is anecdotal evidence and not enough to satisfy the scientific community which demands numbers and data. But this is what I am equipped to do and this is information I think needs to be shared. If I have not shared any of the stories that emerged, it is because I wrote them on behalf of different agencies and they don’t belong to me. What do I want to finish this message with? Just a few words – Reach out, Counsel, Provide Nutrition, Be Sensitive, Be patient-centred. How can we not gain control if we do all this, every day, every hour and every minute? World TB Day is important – so are all other days. This is an EVERY DAY fight. To add to this fight, through AEQUUM, my development communications consultancy, I have been fortunate enough to receive the support of the Lilly MDR TB Partnership to build capacities of 15 lay TB advocates. Find the reports here.  We are attempting to SPEAK UP; we are attempting to carry out this fight EVERY DAY!

Aequum and JATB are also trying to change the face of TB Communication. Find the post here.

As a part of the fellowship received by JATB, two stories were published by mainstream publications.  JATB has also been contributing to the mainstream media fairly regularly. Links to these are pasted below: http://www.deccanherald.com/content/458962/tb-much-more-bacteria.html http://pharma.financialexpress.com/sections/management/3054-fixing-india-s-tb-control-policy http://www.deccanherald.com/content/380541/india039s-fight-against-tb-undermined.html JATB hopes that this year’s World TB Day will translate into action for all those that need it and that TB will be a thing of the past in the very near future.

 

Bharathi Ghanashyam