Fusing journalism and TB – telling the stories as they are

Archive for January 2011

Accurate diagnosis – imperative for TB control in India

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The figures are out there.  There is enough evidence to show India has a serious TB problem on hand and it’s undeniably a cause for concern.  To use a cliche’, while prevention is the best form of cure, it is still aeons away in India, as we have a myriad problems to solve before that.  Where are we on nutrition, sanitation, housing, poverty alleviation, etc, etc?  That’s another story, but it’s also very closely linked to TB control, mainly prevention and one cannot be achieved without the other.

Given that we will continue to have people spreading TB and continue to have people falling ill with TB till the basic issues are fixed, isn’t it logical that we need to put robust diagnostics and treatment regimens in place if we want to prevent the problem from getting worse that it already is? TB is easily cured if accurately detected and treated on time, but this is currently a big challenge in India and the causes for this are many.

Diagnosis for instance.  The most widely used method of TB diagnosis (sputum smear microscopy) currently used, misses more than half of all cases and is largely ineffective in patients with HIV co-infection; while the most sensitive test (culture testing) takes weeks to provide a result, is costly and can only be carried out by highly-trained staff in specialist laboratories.  Additionally, as the first blog on this site demonstrated, the sputum test cannot be used for children as they are unable to cough up sputum unlike adults.

Ineffective TB diagnostics are a lucrative market in India. Patients seeking TB care in the private sector are commonly subjected to diagnostic tests i.e. the antibody-based blood tests, including ELISA, that are completely ineffective at detecting TB. This is because a large number of the world’s population has TB antibodies (which will show up in the blood test), though only about 10% of them will go on to develop the active form of the disease. If patients who do not have TB are misdiagnosed, they could undergo six months of toxic treatment. If patients have active TB and the test misses it, the disease may worsen and they may continue to spread the disease in their community.

According to a preliminary analysis of over 80 labs in the country, it is estimated that patients undergo more than 1.5 million useless TB antibody tests each year. “If they worked, the problem of a gap in the pipeline for a point-of-care assay would have
been solved decades ago,” comments Madhukar Pai, co-chair of the STOP-TB
Partnership’s new diagnostics working group. “The pity is that they don’t work.
In fact, they’re inaccurate and useless. If they worked, the problem of a gap in the pipeline for a point-of-care assay would have been solved decades ago”, comments
Madhukar Pai, co-chair of the STOP-TB Partnership’s new diagnostics working
group. (WHO recommends against innacurate tuberculosis tests by Kelly Morris, Vol 377 January 8, 2011)

The absence of regulatory mechanisms results in the import of these inaccurate diagnostics from France, the UK, US or other countries, where these tests are not approved for TB diagnosis. These tests generate at least US $15 million. In a country that has around 100,000 labs, this estimate is probably only a fraction of the total market.

Correct diagnosis is crucial to the control of tuberculosis in India, particularly in view of the fact that India has set new targets as a part of its Revised National TB Control Plan (RNTCP), which includes early detection of 90 percent of all TB cases by 2015.

Bharathi Ghanashyam

For further reading:WHO recommends against inaccurate tuberculosis tests

Written by JournalistsAgainstTB

January 11, 2011 at 3:04 pm

Networking for journalists – a necessity oft unfulfilled

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I’m overwhelmed! Both by the response I’m getting to this blog and by the realisation of the need for an initiative such as Journalists against TB.  And I have a lot of people to thank for urging me on to do something about health journalism in general and about TB in particular.  While I have no cribs because there is always space for good work in the mainstream media, and I have enjoyed great support from all the publications I write for, the dissatisfaction probably lay in the fact that I did not get space whenever I wanted it, and for whatever topic I wanted to write about.  I had to comply with the priorities of the publication.  And in the process good stories got buried.

And then, my friends, Madhu, Deva and NS happened to me.  Their trust and faith in my abilities to take their causes forward through the media had me scrambling madly and putting in proposal after proposal for stories that somehow did not make news.  Then followed a process of agonising of how I could actually justify their faith and expectations.  And Bingo! a small clutch of my journalist friends and I got together and put this on the ground.

That it is liberating to own a blog is an understatement.  The fact that you don’t have to spend anxious days waiting for editorial clearance for your stories is a feeling that is to be experienced rather than spoken about.  All journalists will empathise with me on this.

The real message of this blog however is one of how important it is for journalists to network and have at hand a willing group of experts who will invest time in building their knowledge and provide easy to understand information at short notice.  And in Madhu, Deva and NS, I have found just such people.  They are all remarkable people and more strength to them.  May their breed increase!

But this blog is about TB remember?  So I’m linking it to one of the finest pieces of investigative journalism I’ve come across in the recent past.  It’s called A Deadly Misdiagnosis by Michael Specter, and appeared in The New Yorker recently.

Thanks Madhu for sending this on.

Bharathi Ghanashyam

Written by JournalistsAgainstTB

January 9, 2011 at 3:22 pm

Posted in TB and Media

अब भी जानलेवा है तपेदिक

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तपेदिक यानी टी बी रोग से दुनिया में सबसे ज्यादा मौतें अकेले भारत में होती हैं. यह तथ्य कल जर्मनी की राजधानी बर्लिन में संपन्न “फेंफडों के स्वास्थ्य” विषयक अंतर्राष्ट्रीय सम्मलेन में सामने आया.

This is a story filed by Jasvinder Sehgal from the recently held 41st Union World Conference on Lung Health, Berlin on behalf of DW-World.DE Deutsche Welle

फेंफडों की बीमारी के इलाज को लेकर अंतर्राष्ट्रीय सम्मलेन हो और उदघाटन समारोह से ले कर विभिन्न  तकनीकी गोष्ठियों और शोध पत्रों में भारत के बारें में चिंताएं हों तो इन रोगों की भयावहता का खुद ब खुद अंदाज़ा लगाया जा सकता है.

द यूनियन अगेंस्ट  ट्यूबरकुलोसिस एंड लंग डीसीस द्वारा आयोजित इस सम्मलेन के  उदघाटन समारोह को  संबोधित करते हुए अमरीकी रोग नियंत्रण और बचाव केंद्र के निदेशक डॉक्टर थामस आर फ्रीडन तक ने अपने भाषण में कई बार भारत में फेफडों की बीमारी को लेकर चिंताएं व्यक्त की. और हकीकत भी यही है कि  फेंफडों की बीमारीयों से दुनियां भर में होने वाली एक चौथाई मौतें  भारत में होती हैं जहाँ लगभग दस लाख लोग इन रोगों के कारण  अकाल मृत्यु  के शिकार बन जाते है.  यदि एच आई वी -एड्स,  मलेरिया और टी बी से मरने वालों की कुल संख्या को जोड़ भी लिया जाये तो भी यह श्वासरोगों से मरने वालों से कम ही होगी .

इस सम्मलेन में श्वास रोगों को लेकर दुनिया का पहला एटलस भी जारी किया गया जिस में इन रोगों की सम्पूर्ण व्याख्या की गयी है. इस एटलस में भारत के बारे में भी एक अध्याय है.  इस के अनुसार दुनिया भर में हर सेकंड न्यूमोनिया के कारण एक बच्चे की मौत हो जाती है और यह रोग भी दुनिया भर में भारत में सर्वाधिक है. हर साल लगभग साढ़े चार करोड़ से ज्यादा बच्चे भारत में न्यूमोनिया से बीमार होते हैं.

यूनियन की शिशु स्वास्थ  निदेशक पेनी एनआरसन का कहना है कि इस के लिए हिब और अन्य वैक्सीन का प्रयोग बहुत ज़रूरी है.   एटलस के अनुसार भारत में अभी भी लगभग बयासी करोड़ लोग लकड़ी, कोयला या अन्य किसी प्रदूषणकारी ईंधन का इस्तेमाल करते हैं जिस से फेंफडों के रोग फैलते हैं.

वैसे दुनिया की आधी आबादी ऐसे ही इंधन का प्रयोग करती है. पर्यावरण प्रदूषण से तो यह रोग और भी ज्यादा फैलते है और इस मामले में भी भारत आगे है. दिल्ली और कोलकत्ता तो दुनिया के सब से ज्यादा प्रदूषित शहरों में शामिल हैं.

यूनियन के लंग हेल्थ निदेशक चेन यूँआन चांग के अनुसार खाना पकाने की साफ़ आदते, प्रदूषण रहित ईंधन और चिमनी के इस्तेमाल से फेंफडों के रोगों से बचा जा सकता हैं.  सम्मलेन में तपेदिक यानी टी बी रोग पर वैश्विक रिपोर्ट भी जारी की गयी.  इसमें भी भारत में इस रोग के सर्वाधिक रोगी होना बताया गया है. पिछले साल विश्व भर में तेरह लाख लोग टी बी से मरें और इन में सबसे ज्यादा तीन लाख रोगी भारत के थे.

सबसे ज्यादा गंभीर बात यह है कि हर साल बीस लाख नए लोगों को टी बी हो जाती है. रिपोर्ट में  इस बात का भी खुलासा हुआ है कि तपेदिक का शिकार वे लोग ज्यादा होते हैं जो तम्बाकू का इस्तेमाल करते है . भारत में चौबीस करोड़ से ज्यादा लोग तम्बाकू का इस्तेमाल करते हैं  और लगभग दस लाख लोग हर साल इस के कारण होने वाली बीमारियों से भी मरते हैं.

यूँ तो डोट्स कार्यक्रम के सफलता की कहानियां भारत में अक्सर सुनायी जाती है पर यह भी सही है कि इस के बावजूद भारत में तपेदिक बढ़ता ही जा रहा है.

सम्मलेन में भारतीय प्रतिनिधियों में इस बात की भी चिंता  थी कि जब विश्व स्वास्थ संगठन के अनुसार भारत की एक तिहाई जनता में टी बी होने की सम्भावना है तो क्यों अन्य देशों की तरह भारत सरकार भी इस के लिए आइ. पी. टी. दवाओं का वितरण नहीं करती.

सम्मलेन में पढ़े गए एक अन्य शोध पत्र में भी “डाट्स कार्यक्रम” के लिए दवा बनानें वाली कंपनियों द्वारा विकासशील और विकसित  देशों के लिए अलग- अलग गुणवत्ता की दवाएं बनाने की ओर भी ध्यान दिलाया गया.

अंतर्राष्ट्रीय विशेषज्ञों तक ने यह माना की टी बी चूंकि विकसित  देशों की बीमारी नहीं है इस लिए भी इस रोग पर शोध कम हो रहा है और वैक्सीन तथा नयी दवाएं नहीं खोजी जा रही हैं.

यहाँ तक की स्वाईन फ्लू का वैक्सीन भी अत्यंत कम समय में खोज लिया गया पर टी बी से अभी भी सौ साल पुराने बी. सी. जी.  वैक्सीन से निबटा जा रहा हैं.  अमरीका के  मैक-गिल विश्वविद्यालय में भारतीय मूल के डॉक्टर मधुकर पाई बताते हैं कि अगर टी बी से निबटना है तो भारत को इस रोग की जांच के लिए उपयोग में लाये जा रहे  थूक की जांच से ऊपर उठ कर आधुनिक उपायों को काम में लेना होगा.

रिपोर्ट: जसविंदर सहगल, बर्लिन

संपादन: उज्ज्वल भट्टाचार्य

Written by JournalistsAgainstTB

January 9, 2011 at 5:47 am

Posted in TB and Media

Media as stakeholders to public health – where are we?

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It’s time to air my pet peeve again!  In the last 30 days, I’ve attended two conferences with very interesting titles – Bringing Evidence into Public Health Policy – Five Years of the National Rural Health Mission, and the International Symposium on Tuberculosis Diagnostics: Innovating to make an Impact conducted by the International Centre for Genetic Engineering and Biotechnology. The objective of the first conference was clearly to bring researchers and policy makers together so that there could be a moving away from the silo approach where researchers worked on a different plane and policy worked on another with no convergence between the two.  The second conference sought to highlight the desperate need for newer and more accurate diagnostic tools for TB, which was sorely lacking even a century and more after it was discovered.

Both conferences held immense potential for initiatives and discussions that would impact the general public and make their lives better.  Both conferences were packed with content which interested me enough to want to be there.  Organisers of both the conferences understood the importance of media attendance and had given a lot of thought to who they wanted present.  Wanting to go beyond mere event coverage, they had ensured that journalists committed to writing on health were present in addition to reporters who would report the event.  There was every attempt made to ensure that we got the information we wanted and the support we wanted, should we want to pick up any stories from the conferences.  So far, so good.

It was when the sessions began that the problems surfaced.  Researchers and scientists are loyal to one another, they speak to one another and stay together like no other groups I have seen.  In a room that is packed with scientists and researchers, it isn’t difficult for a mere journalist to  feel completely lonely and isolated and unaddressed.

Even to someone as determined as me to sit through the conferences end to end, the sessions were tough to sit through, particularly the post lunch ones!  Scientific jargon and research methodologies were discussed furiously, packed powerpoint slides with abstruse terms, calculations and what seemed like tribal symbols (!) zipped past my already befuddled brain which had also been lulled into a post lunch stupor, and made no sense to me at all.  So acute was my disconnect that as I heard animated discussions around some of the sessions, I only sensed something significant was being discussed and that they made sense to someone somewhere!

I have often, in fact very often, heard it said that the media is agruably one of the most important stakeholders to any issue, be it politics, sports, science or development.  If that were true, wouldn’t more efforts be made to make such conferences more inclusive?  Wouldn’t researchers and scientists make greater efforts to ‘talk to us’ rather than ‘talk down to us’ or worse still, forget our presence?

As a health journalist, who writes on almost nothing other than health, I have the time and the patience to sift through scientific jargon, talk to various people who can demystify complexities of health issues and present them to my readers.  But it’s tough.  How can a general reporter, after attending a conference for a few hours, work to stiff deadlines and make it easy for a lay reader to understand terms like specificity and sensitivity (just some of the simpler ones I heard) without confounding him/her further.  Therefore they take the easiest route, which is to outline the 5 Ws and 1 H and file their stories.  And get unfairly accused for turning in event based reports.

It’s not that attention has not been paid to this aspect.  There are efforts going on across the world to include the media in almost every issue, and to build their capacities for better reporting.  But these are surface efforts and one almost feels they are tokenism.  The efforts are just not enough, and media activities get the least funding and last priority.

It is a well known fact that the general public gets health information almost solely from the media and not from their doctors or from scientists.  Does this not indicate that much more needs to be done in order to empower them with correct and accurate information?  Does this then not mean that the media has to be first knowledgeable enough to impart accurate information?  It would not be an unreasonable demand from the media to ask for much more funding, much more capacity building efforts and much, much more commitment from those who expect the media to walk with them in their efforts to spread awareness on an issue, be it climate change or TB or HIV or any other!!
Bharathi Ghanashyam

Written by JournalistsAgainstTB

January 8, 2011 at 5:20 pm

Posted in TB and Media

TB and activism – the missing link

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While the real stories of this blog get built, I’m allowing myself the luxury of venting, ruminating, theorising and sharing opinions which might find agreement among some readers.  A reader of this blog, Dr Anand Das has revealed some very interesting, and

Activism at AIDS 2010, Vienna

Activism at AIDS 2010, Vienna

indeed startling facts about TB.  He says, “More than two billion people, equal to one third of the world’s total population, are infected with TB bacilli, the microbes that cause TB. One in every 10 of those people will become sick with active TB in his or her lifetime. People living with HIV are at a much greater risk.  Do we still need a reason to talk TB????”  Indeed, do we still need reason?

Why is there such lack of interest in such a serious issue?    Without meaning to make unfair comparisons, TB has the same or greater problems than HIV in that it attacks greater numbers and carries them more swiftly towards avoidable deaths.  TB also fosters stigma, it affects the poor disproportionately, it has gender dimensions, it ravages families and claims the lives of productive individuals; it is as much if not more of a development issue. And yet, TB is confined to labs, hospitals and the medical fraternity. Why is the activism, the colour and the energy, which is a part of HIV missing from this issue? Why is it for instance, that we have never heard of TB solidarity groups?  There are groups for people suffering from cancer; substance and alcohol abusers have recourse to help through solidarity groups as do disability groups.  How come there isn’t a network of people who are suffering from or have recovered from TB?  How come we have never see a TB affected person vociferously demanding his/her rights to correct diagnosis and treatment?

I’ve often heard that HIV got world attention because people had learnt lessons from TB and leprosy and did not want HIV+ve people to suffer the same fate as them.  Strange logic that, considering we continue to subject TB and leprosy patients to the same fate that helped people learn lessons!

Is it about the money?  Activism in HIV did not happen by itself. The world came together, great amounts of money were infused into whipping up activism and people living with HIV were encouraged to break out and face the world.  It would be interesting to know how much of the money that has gone into HIV has been for the science, i.e. testing, treatment and diagnostics etc and how much of it was for the social side of the infection.  My uneducated guess says it would be a significant percentage of the whole.  And it has paid dividends.  While it might not have eradicated stigma, it has empowered people to demand services and better quality of lives for themselves.

If as Dr Das says, one in ten will suffer from TB in their lifetimes, that one in ten could be you or me, so shouldn’t each one of us be an activist?

Bharathi Ghanashyam

Written by JournalistsAgainstTB

January 6, 2011 at 4:00 pm

Posted in TB and Media

TB and tobacco – the unexplored linkages

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On World Tuberculosis day 2010, health workers across the globe made new pledges to curb the epidemic, which affects 10-13 million people worldwide, according to the World Health Organization. India has the highest rate of infection in the world and health experts are drawing attention to the connection between smoking tobacco and the disease. From Jaipuur, Rajasthan, FSRN’s Jasvinder Sehgal reports.

Jasvinder Sehgal is a member of this group and a Journalist Against TB.

Written by JournalistsAgainstTB

January 5, 2011 at 2:58 pm

Posted in TB and Media

Why does TB not make news?

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It’s an old disease!  We’ve done too much on TB!  This doesn’t work for us!  TB?  But there’s no reader interest, give us something on AIDS orphans!  These are just some of the reactions I’ve got in response to my dogged pursuit of media houses to publish more stories on TB.

The disease may be old but so what? It’s still taking lives.  Consider the figures. TB kills about 900 people per day in India, or about two people every three minutes. And each year there are 99,000 cases of multi-drug resistant TB. Nearly five percent of the incident cases there are HIV-positive (David Bryden, Centre for Global Health Policy). TB is easily curable and yet, it hasn’t gone away.  TB is not just a disease; it is debatably a much greater social problem than HIV, considering that it spreads with greater ease as it is airborne and has strong linkages to poverty, lack of hygeine, malnutrition and ironically enough, even progress.

Before the brickbats hit me, let me explain.  The causes for the spread of TB are too many to go into in a short blog so I’m staying with just one of them.  Progress has brought with it a churning among people as it were and like never before, we have rurals migrating to cities in droves  in search of better lives and occupations.  It doesn’t take a great deal of imagination to determine what quality of lives awaits them in cities.  Equipped with little more than a will to work and earn, what they get in return for leaving their homes and occupations (largely farming), is more poverty than they were used to, dismal living conditions and thereafter, vulnerability to diseases such as TB.  More often than not, all they get by way of living spaces is dingy tenements in densely populated slums; a factor that is hugely conducive to the spread of TB.

India has recorded 2 million new cases of TB in 2009.  Isn’t it important to know why these cases occured?  Isn’t it important to know who these 2 million are and what conditions they are living in?  Isn’t it important that TB is the leading cause of death among Indians between the ages of 15 and 45—the most productive age group, and causes the country a staggering US$3 billion in economic losses each year?  Isn’t it important to do something about the fact that out of an estimated 1.3 million people who died worldwide of TB in 2008, India accounted for 2.8 lakh lives? If not for anything else, in our scramble to stand up and be counted as an economic superpower, isn’t it important to fix the issues that can actually impede our run to the winning post?  Just as a self-serving, selfish move, shouldn’t we be ensuring we have a healthy population before we fall out of the race?

What better way can there be than to start talking about it?  Telling the stories?  Forcing the powers that be to sit up and think?  Is the media listening?   TB is an old disease but it has the power to scuttle big plans and ambitions that India has for itself…

Bharathi Ghanashyam

Written by JournalistsAgainstTB

January 4, 2011 at 4:28 pm

Posted in TB and Media

Children and TB – the diagnostic challenges

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It all began with a story I was writing on TB/HIV co-infection among children.  I met scores of little children living with HIV who had also contracted TB, which is the most common co-infection that attacks people living with HIV, be it adults or children.

The children were already grappling with the fallouts of HIV, and TB was adding to their misery, robbing them of the joys of growing up, the previleges of going to school, and most importantly, just the joys of being carefree children.  They were emaciated, weak, cranky and did not know why they were different from other children of their age.

The human angle aside, the children who were fortunate to access treatment were also posing severe challenges to their doctors who were grappling with issues of accurate diagnosis and treatment thereafter.

This is my story:

Sunshine and fresh air floods the general ward in the Regional Paediatric ART Centre of Indira Gandhi Institute of Child Health (IGICH), Bangalore. On a bed that is way too large for her, Aditi (2 ½), waif – like and weighing just 6.5 kgs, lies, savouring a biscuit and smiling. Her eyes appear too large for her pale, fleshless face; her limbs resemble brittle twigs. As her mother picks up Aditi and stands her on her feet, it seems like her frail legs will snap under the weight of her body. Dr G.N. Sanjeeva, Senior Medical Officer says Aditi has just been diagnosed HIV positive and he suspects she also has TB. But he
is worried that it might not be possible to substantiate his suspicion through tests because it is difficult to make accurate diagnoses of TB in children. This will make it doubly difficult for him to decide on a course of treatment for Aditi.

Sushil (12) is HIV positive and has suffered several attacks of TB, which has in turns targeted his stomach, brain and lungs. Though he has recovered each time after intensive treatment, these attacks have posed severe diagnostic problems to his doctors. He is presently on anti-retroviral therapy (ART) as well as TB medication and his mother says he has to ingest about 10-12 tablets everyday. At times when he is suffering from more than one opportunistic infection (OI), his pill burden goes up to as many
as 16 pills per day. This often makes him irritable enough to refuse medication. His treatment is being facilitated at SEWA Clinic in Bangalore by Milana, a support group for families affected by HIV/AIDS.  SEWA Clinic is a charitable facility that provides free medical aid.

At Sneha Care Home, Bangalore, an institution that provides holistic care to HIV positive children, Raju (11), a double-orphan, who is HIV positive has just recovered from TB and is currently only on ART medication. Sister Maria, Clinical Coordinator says, “When Raju was admitted to Sneha Care Home, he was malnourished, had a very low CD4 count, and had TB and pneumonia as well. It has taken months of careful nursing and intensive medication for his multiple health complications to bring him back to health.”

Diagnosis – the complexities

Aditi, Raju and Sushil and hundreds like them present challenges to doctors as treating TB and HIV co-infection in children is associated with complex issues. Even though they have good access to treatment and the potential to live a healthy life they face severe problems while being assessed for treatment. The most challenging of these is related to accurate diagnosis of TB.  While exact figures for children who suffer from co-infection of HIV and TB are not available, WHO figures indicate that at least one-third of the 33.2 million people living with HIV worldwide are infected with TB, are 20-30 times more likely to develop TB than those without HIV and one in four people with HIV die due to TB. It is evident that a large number of these will be children. According to WHO, over 250,000 children develop TB and 100,000 children will continue to die each year from TB.

Closer to home, India has the highest burden of TB in the world. Exact figures for children suffering from TB are not available but it is the leading cause of death among Indians between the ages of 15 and 45— the most productive age group—causing the country a staggering US$3 billion in economic losses each year.

TB is also the most common co-infection in people living with HIV, and children are no exception. HIV is the most powerful factor known to increase the risk of TB in children and the prevalence (more often extra-pulmonary) is almost 60 per cent. Revised National Tuberculosis Control Programme (RNTCP), India specifies in its guidelines
that “…diagnosis of TB in children has to be based on a combination of clinical presentation, sputum examination wherever possible, chest X ray, Mantoux test and history of contact. Diagnosis of TB in children should be made by a medical officer. Where diagnostic difficulties are faced, referral of the child should be made to a pediatrician for further management…” (

Dr Sanjeeva says, “Diagnosis is difficult even where a combination of methods is used. Children are unable to cough up sputum like adults; in children TB is a paucibacillary (containing very few bacilli) disease, making it difficult to detect and test results can often show false negative. It is possible to use samples from a child’s lung or stomach but the procedures are invasive, and therefore traumatic. They also require trained staff and good facilities, which are not always available. The Mantoux test, which is commonly used to diagnose TB in children, is also not very reliable. Additionally, it is not useful in children above five years in age. ” He continues, “This indicates a need for the doctors to have a high index of suspicion. We often rely on history of contact and sometimes resort to treatment if we find that parents or people associated with the child have TB. This can lead to over-treatment or unnecessary medication.”

Overlapping symptoms between HIV and TB pose further diagnostic problems. Several symptoms associated with TB, such as fever, weight loss, cough etc can be common to other (OIs) associated with HIV and in the absence of reliable tests, can result in wrong diagnosis, and therefore wrong treatment, both of which are dangerous.

Dr B Satish, who has been treating Sushil for over a decade says, “Treating Sushil has been extremely difficult because of repeated attacks of TB combined with his HIV positive condition. When children need TB and HIV medication simultaneously because their symptoms warrant it, we always stabilize the TB first before beginning ART. Thereafter, we need to choose the right combination of ART so it does not interfere with the TB medication. But to begin with, it is absolutely imperative for us to be sure of our TB diagnosis.”

The good news is that despite the pill burden, adherence among children is very promising because of commitment on the part of caregivers and their recovery rates are good. For instance, out of 730 children registered for TB treatment over the past four years at IGICH, only two children did not complete the treatment. The above factors indicate the need for better tools to accurately diagnose TB in children, whether or not they are HIV positive.

As stated in Pathways to better diagnostics for Tuberculosis, A blueprint for the development of TB diagnostics by the New Diagnostics Working Group of the Stop -TB Partnership, “…Increasing the speed, effectiveness and accuracy of diagnostic tests is central to the goal of rolling back the global tuberculosis epidemic that afflicts nearly a third of the world’s population. Though recent and ongoing advancements in drug therapies offer great promise for saving lives, the unfortunate fact is that new medicines have limited value in the places where TB is rampant. This is because the principal diagnostic
tools used in developing countries for determining whether someone has tuberculosis – microscopic examination of stained sputum and chest X-ray – are simply not accurate enough to identify many TB infections. In addition, many poor and vulnerable people lack access to even these basic diagnostic tools and so do not find out what is wrong with them until it is too late to successfully treat the disease and until long after they are likely to have transmitted the disease to others. What is required are far simpler, accurate point of care tests that can be used in remote health centres to reach the majority of tuberculosis sufferers …”

Is it happening?

Given the importance of having access to simple, accurate point of care tests, where are we presently in providing those? Dr Madhukar Pai, MD, PhD, Asst. Professor and CIHR New Investigator, Mc Gill University, and Co-Chair, Stop-TB Partnership’s New Diagnostics Working Group says, “Pediatric TB is definitely a big diagnostic challenge and the need for a non-sputum based test is a big one. A big challenge for evaluating new diagnostics in children is the lack of a good gold standard – active TB is hard to confirm in children because they are rarely culture-positive. There are some non-sputum based
tests available but none of them really work. Efforts are underway to improve them, but nothing is imminent.”

According to Dr Pai, “India has the potential to solve its TB problem with “homegrown” solutions. Indian pharma companies revolutionized access to high-quality, affordable AIDS drugs through generic production—effectively becoming the world’s pharmacy for antiretroviral drugs and saving millions of lives. Indian companies could also become the world’s hub for high-quality generic diagnostics, including those for TB. India has a growing number of domestic diagnostic manufacturers. There is a growing R&D community in India that could spark innovation of new diagnostics. Small Indian biotechs and start-ups
have already invested in front-end research to identify new ways to detect TB and other diseases. They are now interested in moving innovative products forward but lack the capacity for large-scale clinical trials. Several Indian academics are involved in TB research, but lack the ability to convert their scientific work into commercial products.”

While this story is based in India and reflects local challenges, these are also challenges that the larger world is grappling with. The world community needs to come together with increased will, funding commitments and vigour to research and come up with better diagnostic tools for paediatric TB.  Children like Sushil and Aditi have a right to good health and what better place to raise this issue than a conference themed Rights Here, Right Now?

Sources for information

Click to access factsheet_hivtb_2009update.pdf
Names of children have been changed to protect their identities.

An abridged version of this story was first published in Panoscope,  a magazine published by Panos at AIDS 2010 held in Vienna in August 2010.

Bharathi Ghanashyam

Written by JournalistsAgainstTB

January 1, 2011 at 5:08 pm

Posted in TB and Media

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