‘Media and the TB control sector – time to build a relationship’

Bharathi Ghanashyam

This is an invited piece and I cannot but express the sense of relief I feel. I did not have to chase editors or send multiple reminders in order to get it published. I did not have to anxiously wait for weeks and then realise my story had been killed. And yet, this is not the story with every piece I write. The very same editors who accept with ease, the articles I write on other health issues such as HIV/AIDS or primary healthcare, or whatever, outright reject my stories on TB without leaving any room for negotiation.

I have heard a multitude of reasons for this. As my usually encouraging editor friends tell me, readers are not interested in TB as they don’t identify with it. It affects only the poor and the underprivileged; it is an old disease and doesn’t make news anymore. There are no developments in the TB sector; there is no new research or advancement.

TB also makes for news that is lacklustre when compared with HIV for instance. It is not a health condition (unlike HIV), which lends itself to drama and sensation. HIV stories, while they should not, can be projected through very colourful lens, considering the HIV infection spreads chiefly through the sexual route. That probably explains the reader interest bit. Be that as it may, on all fronts, TB ranks very low with the media.

But here’s why the media should be telling its readers and viewers about TB. It has been and continues to be a lethal, killer disease despite it being entirely preventable and curable. According to the Revised National TB Control Programme (RNTCP), 1.8 million persons develop the disease annually, of which about 800,000 are infectious; and, until recently, 370,000 died of it annually. There are also data to indicate that India has the highest TB burden in the world.

About 1,000 people die of TB every day. To quote an oft repeated simile, this is the equivalent of four airbuses crashing on a single day. It does not take much to imagine the amount of airtime and column space that kind of news would get. But news about 1000 people dying of TB everyday passes by without a whimper.

To bust a myth, TB is not only a disease of the poor; rather it is a disease of the immune compromised. For sure TB is caused by the bacterium Mycobacterium tuberculosis and is spread from person to person through the air and people living in unhygienic and congested conditions, read that as ‘poor’ are more vulnerable to it. But there is now evidence to prove that people living with diabetes are also vulnerable to TB. More people living with HIV die of TB than any other co-infection.

There’s more. The only vaccine we have for TB (i.e. BCG) is over 90 years old. TB treatment has hardly changed in more than 40 years. The only reliable diagnostic tool we had for TB till very recently was the sputum microscopy test which is also over a century old and which misses more than half of all positive cases. So we have problems on all three fronts – prevention, diagnosis and treatment.

But that’s only half the problem. We now have amidst us an increasing number of drug-resistant TB cases, which is far more difficult to cure and requires long, intensive and expensive medication that is extremely toxic and causes severe, almost crippling side effects. Drug resistant TB, also called DR TB, MDR TB or XDR TB is caused when the patient drops out of treatment for primary TB before completing the entire course or the patient has been wrongly managed. If he/she gets a relapse, or actually gets TB, it is resistant to the first line of drugs. MDR-TB therefore is a man-made phenomenon arising out of poor treatment, poor drugs and poor adherence.

According to the WHO Global TB Report – 2012, India has an estimated 66,000 notified cases of MDR TB, of which only 16,820 were initiated on treatment as of September 2012. The emphasis here is on the word notified. There is good reason to suspect that there is a much higher number of cases which have not come to the notice of the official RNTCP. This is because India’s private health sector does not notify all cases to the RNTCP. Each of these cases is capable of spreading the disease to 15 others.

The RNTCP acknowledges that TB is a major barrier to social and economic development. An estimated 100 million workdays are lost due to illness annually. Society and the country at large also incur a huge cost due to TB—nearly $ 3 billion in indirect costs and $ 300 million in direct costs.

So, do we or don’t we have a case here for the media to take up? Shouldn’t the above situation be the reason enough for the media to give it more attention regardless of whether it is the rich or the poor that are infected/affected? Shouldn’t all this information be out in the open rather than held closely within the TB sector alone?

Why is this not happening? Why is TB control staff not holding media workshops to engage them? Why are good ad campaigns like BulgamBhai not getting air time? The blame for this lies least with the media. Unlike HIV where governments, funding agencies, networks of positive people and other stakeholders came together, and invested time and effort to address the media and build their knowledge and capacity on reporting on HIV, no such efforts have been made in the TB sector. It is a known fact that there is very little investment even in the core areas such as research and development of diagnostic tools and drugs. So investment in awareness generation activities is really on the farthest burner.

While India has taken several steps that can lead to more efficient prevention of primary as well as MDR TB, we have a long way to go with regard to enforcement. To name a few, India is the first country to ban the use of serological tests to diagnose TB. India has also made it mandatory for the private sector to notify every case of TB to RNTCP. We also have one of the world’s most successful, government-run TB control programmes in RNTCP.

It may be possible for India to eliminate TB if only we had vigilant enforcement, good private sector cooperation to ensure early diagnosis and rapid treatment. Every person with chronic cough for more than two weeks must be investigated for pulmonary TB, because diagnostic delays can prove costly.

More importantly, we have to bolster these efforts with a massive campaign that can spread awareness on TB and the correct way to treat it. The quickest route for building such awareness is obviously through the mainstream media. But that’s not going to happen until we invite the media to partner with TB control efforts and impress on them that the situation warrants more attention than it currently gets. Is the TB sector listening?