Tuberculosis & The Journalist
Why do so few articles on tuberculosis appear in our mainstream media?
I was worried. The potholed roads were making my father’s cerebrospinal fluid slosh inside the Eagle thermos clamped tight between my thighs.
The year was 1997 and the doctors in Thiruvananthapuram suspected my father had tuberculosis of the brain. We were asked to confirm it. The thermos was to be transported aboard an Indian Airlines flight to Delhi. In Delhi, it was to be rushed to the All India Institute of Medical Sciences where a PCR test would confirm tuberculosis.
One patient. One thermos. One day’s journey.
India has the highest TB burden in the world. Three million new cases are reported each year. A tenth of those don’t make it through.
The question is not the lack of suitable drugs – unless it is an extreme case of TDR, tuberculosis is curable. The question is about waking up people – waking up the patients, waking up the doctors, waking up the leaders. The question is about Awakening.
And awakening can only come from awareness. This I did not realise then – preoccupied as I was with the thermos and the CSF and the race against time – but I realise it now. I realise what awareness would have meant. It would have meant a biosafety level II diagnostic centre in every town, more TB-centric hospitals, more doctors and nurses, less crowding, more medical facilities, better drug availability, better follow-up. Most crucially, it would have meant a better understanding of the problem by our policy-makers and health officials, for only an aware citizen is in a position to demand justice and rights; only he can force those he has elected to make available or make way.
For any disease, awareness is as important as its cure. Out of the 330,000 Indians who die of tuberculosis in India every year, a significant number wouldn’t have known they were suffering from TB in the first place. To know about tuberculosis is half the battle won. Perhaps that is why we are losing it. Hell, even Dr Batra puts in more ads about his clinic than our Health Ministry does on tuberculosis. It took BBC to come up with a unique TB-awareness campaign for India. Their Bulgum bhai became immensely popular – and I dare say endearing too. Compare this to what we’ve been up to – no newspaper ads (except of course on World Tuberculosis Day), no theatre ads, and hardly anything on the radio – and this when we have our own government’s excellent polio awareness campaign to learn from.
Mainstream media doesn’t fare much better. TB articles and panel discussions are a rarity, if at all, and then, too, it’s mostly reportage of a scientific announcement that first originated in the West.
It was with bewilderment, then, last autumn, that I came across – what was to my mind – one of the most comprehensive and discerning treatise on tuberculosis ever published from India.
The article, published in Caravan, was titled “The Growing Tuberculosis Threat”. It was written by Prayaag Akbar.
It is not my aim to review Mr Akbar’s article or elaborate on it, except perhaps to say that everyone – doctors, journalists, scientists included – should read it. Why he wrote it was what I wanted to get to the bottom of. I also wanted to understand how he went about it, how did he begin to approach this subject, and why such few articles on tuberculosis appear in our mainstream media.
Prayaag studied economics and political science at Dartmouth, decided he wanted nothing to do with economics and the world of finance, and ended up working in the Features department at Outlook. A couple of job-and ocean-hoppings later, he now looks after Guardian20, the arts & culture section of the newspaper, where he is the Associate Editor.
“What made you think of writing a comprehensive piece on tuberculosis?” I ask him.
“I had just moved to Bombay and happened to meet a couple of medical anthropology PhD students doing some very interesting research on XDR. I was intrigued by three things, all related: how endemic and serious a problem it was in India; the direct correlative link it had with poverty; and (combination of the first two) the subsequent under-reporting of the problem in all our publications, whether newspapers or magazines – as if a disease that was seen to be of the poor did not warrant discussion.”
“Is there a Health & Disease beat in Indian media? If yes, is it popular among journalists?”
“There is, yes. Most of the big dailies will have dedicated reporters, such as the lady who broke the TDR story in Times of India, Malathi Iyer. I can’t speak of its popularity, but considering its vital importance at a programmatic and personal level, I do think our editors could devote more space to quality analysis and reporting of things that happen. Things like TDR or H1N1 hit the headlines, but this only when Western medical journals write about it. Journalists on this beat should reach out to doctors and researchers more often – there is a wealth of research already being published that the media does not touch.”
Prayaag is right. The tagging of tuberculosis as a “poor man’s disease” is true. This is both unfortunate and unfair.
Poverty is never a choice, keeping people in poverty is.
In the past two decades there have been but a dozen scientific studies on the socio-demographic profiling of tuberculosis among the Indian slum population, supposedly the “breeding ground” for TB. A 2008 study by National Tuberculosis Institute, Bangalore, published in the prestigious International Journal of Tuberculosis and Lung Disease found that most “pulmonary tuberculosis cases had poor knowledge about TB, and most of those with pulmonary symptoms were not aware of the availability of free anti-tuberculosis services at government health facilities”. The researchers concluded that “educational interventions targeted at slum dwellers and their health providers are needed”.
DOTS is yet to reach where voter cards have. Invisible people, indelible ink.
“Are you, as a journalist, disappointed by the state indifference? Do you feel we as a nation have failed to tackle it?”
“When I started writing the story, when I spoke to people in the private sector, I was very adamant that the state was in the wrong. It was only once I started visiting TB centres, started talking to people who handle the colossal TB programs that India runs, that I was also confronted by the scale of the problem they deal with, how inefficiencies creep in, how diligent some of the health officials are. Which is not to say they’re above reproach – the concerns that motivated the story (that the govt was trying to cover up this XDR problem) still bother me. But I came to understand why the government could say we didn’t have TDR, why they were worried about misreporting, and so on. The scale of the problem was very, very discomfiting. It is a massive thing to tackle, and that even well-constructed, well-meaning programmes in fact contribute to growing resistance was something that worried me immensely…The first XDR-cough incident was also worrying, but then you understand more about the disease, and its transmissibility, and as I’ve explained in my story, just a cough is usually not enough – it requires prolonged contact, which is why ward boys get the disease more often than doctors.”
“Tell me about the doctors, the nurses, the administrative staff…”
“On the whole I was really impressed by some of the TB doctors and researchers I met. To devote your whole life to a problem that seems utterly intractable, it takes a level of dedication that is quite extraordinary, I think. You assume someone in Hinduja Hospital with a flourishing private practice and a Mont Blanc in his shirt pocket would be perhaps cut off from the ground realities of the problem, but doctors like Udwadia had such great awareness of how difficult it is for people to follow the prescribed treatments, of problems women face in getting treatment, things like that. They were so understanding of their patients’ experience. It was revelatory. It was more difficult to gauge in the public sector because people in the public sector tend to be suspicious of the media, but here what was most impressive was how nurses and ward boys and karamcharis worked so hard despite the terrible, terrible conditions of these hospitals and wards. Working for low pay, having to deal with constant exposure – you’re basically putting your own life on the line for the good of public health.”
“What were the reactions to you article from politicians, bureaucrats?”
“Didn’t hear from anyone, even the doctor-bureaucrat I interviewed and quoted extensively. Irony of ironies, he ended up presenting me with an award!”
“And fellow journalists?”
“It was on the whole a positive response. A number of them wrote to congratulate me, which was very gratifying. A few had problems with some aspects of the piece, as journalists are bound to, and I admit I didn’t do as much as I possibly could have (for instance I became so fascinated with the debates at a programmatic level that I missed out, perhaps, on giving the afflicted a voice).”
“There is also”, adds Prayaag, “the nature of our job as reporters and editors. I spent three months researching, talking to academics, patients, doctors, reading very difficult scientific papers, and by the time I had my first draft I still felt I needed more time. Health stories, I’ve found, are a very slippery slope – once you start digging you can keep at it endlessly”.
I should perhaps add here that I am guilty of writing about only what I have seen or read: scientific papers mostly, and the mainstream English media reports, articles, and TV debates.
“The non-English media”, says Prayaag, “has been at the forefront of reporting about TB. TB is generally seen as a disease of the poor – though MDR and TDR are making a mockery of that classification – and perhaps that is why it is largely ignored by the English media. The regional language media has been writing about TB for some time now. I don’t know if Caravan is planning to translate my article into other languages, but the fact that news about TB reached an English-reading audience is also important.”
“Why is the media, do you think, not that interested in discussing public health failure as much as it is in discussing the issue of governance and corruption?”
“Well, I think that’s in the nature of the media. Public health is not a big concern unless it is pitched as a CRISIS. This is what gets it into the dailies. As for the magazines: for instance, my story, while well-received, hasn’t, I’m sure, garnered close to as many hits on the Caravan website as a profile they would do.”
I checked on this. Prayaag is right. While his article has received 4 comments over the past year, a Caravan profile on Narendra Modi (Emperor Uncrowned) has garnered 226.
Perhaps if Narendra Modi or Aakar Patel were to discuss tuberculosis…
Without awareness, there can be no awakening. If we are to treat all our TB patients, we have to first make them understand what they, and all of us, are up against. This is war. The doctors are at the frontline and in the trenches. Let’s support them with all the resources we have at our disposal. Cough up!
In part III of the series I shall aim to present a scientist’s perspective on the subject, how they look at the TB problem and whether it is possible, once again, to tame this dreaded bug.
The author is currently attending a conference on Public Health & Journalism, Who’s There? Yes (WTY), on the sidelines of the World Health Assembly, where Tuberculosis and non-communicable diseases are part of the discussion.
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