Archive for the ‘TB and Media’ Category
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!
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…
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!
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: email@example.com
Dear Members of the Medical Fraternity,
Greetings from JATB and the GR Initiative!
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!
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…
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 efforts made by the Mumbai Mission to raise CSR funds from corporates for TB Control. The TB sector is well aware of the challenges associated with doing this, given the competing priorities for CSR funding, from other, equally compelling social causes. Mumbai Mission has seen considerable success in this area and Dr Shah shares how they did it. The audio clip below gives valuable insights for entities seeking to raise funds from corporates for TB control. As JATB, an entirely voluntary initiative has consistently reiterated, the contents are more important and not the vehicle through which they are delivered. The audio clip might suffer marginally from quality issues because the interview was conducted through a simple mobile phone. Reader/listener cooperation is anticipated.
Bharathi Ghanashyam (grateful acknowledgements to Jasvinder Sehgal for help with audio enhancement)
TB and CSR – a perspective by Dr Daksha Shah, TB Officer, Mumbai Mission for TB Control
HAPPY DIWALI FROM JATB!
Narsayya and his wife are the real people of India. The real aam admi. When I met him three years ago in North Karnataka, he was suffering from TB and was on medication. He and his wife have two children, both severely disabled and when I met him, he was unable to work and earn and didn’t know where his next meal was coming from and yet, he and his wife posed for my camera, their faces beaming. I do hope he is alright now. This greeting goes out to all readers of JATB in his name and it’s symbolic that I should be posting this from Liverpool where the world has come together to find solutions to problems that he and others like him have experienced. I hope they succeed, I hope we all succeed!
India has had more than a few “I told you so!” moments at the 47th Union World Conference on Lung Health. For years now, the TB sector in India has been cautioning the government on the dangers of neglecting, or providing inadequate support, or even ignoring implementation gaps in TB control in India. The Government of India, much in the way of an impetuous, headstrong teenager, has ignored all these warnings. It has sat back complacently, happy it has a TB control programme in place and the budgets for it, regardless of how it is working on the ground. And today, on the world stage, it’s all in the open. The gaps are rearing their ugly heads for the world to see. The figures are not important; they are oft quoted. But they are also not healthy. The recently released Global TB Report 2016 strengthens the argument.
Every session at the conference be it the opening ceremony, the plenaries, or the side events, have invariably reminded us Indians in the audience that we need to do something about the very unhealthy figures for TB in India. It doesn’t matter that arguably the biggest star in the world today, Mr Amitabh Bachchan made an impassioned plea (through a video message which was played at the inaugural) for TB control, and made us all proud for the passion he infused into it. We were reminded we had the most TB infected people in the world. It doesn’t matter we are one of the fastest growing economies and the back office of the world for the banking, insurance, healthcare and other sectors. We were reminded we have the largest number of people dying of TB in the world. It doesn’t matter we have demonstrated commitment by providing budgets for a TB control programme, provided for MDR-TB patients to get free medication and said and done all the right things. We were constantly reminded that we were contributing to the reasons for why TB was not ‘going away’ fast enough. The world cried SHAME!
Should we be bothered? I think yes. It doesn’t matter how rich we are or how productive we are as a nation. If we are contributing to death and disease and avoidable suffering in the world, and in our own country, we need to cry SHAME as well.Why, I want to ask, is our Health Minister not here to reassure the world that we are as worried about TB in India as they are? Why has he not carried a national commitment that we will pursue TB control with the same passion that we pursue the ‘Make in India’ programme or the climate change agenda or any other? To make all these possible we need a healthy population and it begins with public health.
TB is a communicable, airborne disease and we are ‘making’ a lot of it in India. And spreading it around. I don’t care for figures; they don’t make as much sense to me as the story of Kishanlal, who died of TB needlessly. He was the main protagonist of the play staged by the Axshya Project at the Community Common.
Kishanlal was a character in the play, and yet, he should not have died. So also thousands of others who are really dying in India simply because we have not got our act together as yet. I am deliberately avoiding quoting data because I am tired of data. Show me some faces who have overcome. Show me some faces who got help when they needed it. Show me that every person who needed help to overcome TB got it! Come on India, you can ‘Make health in India’.
I am putting this responsibility at Mr Modi’s doorstep simply because he has shown us hope by not sleeping his way through his tenure. His enthusiasm enthuses me and I am sure that his personal intervention will make a difference to the TB situation in India. Am I thinking right Mr Modi? Will you come true on your promises, broken as they are for now?
The views expressed here are solely of the author.