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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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