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.
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,
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