journalistsagainsttb

Fusing journalism and TB – telling the stories as they are

Archive for January 2011

Where do I look for information?

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I was telling a colleague about Journalists against TB.  He specialises in search engine optimization and had data to prove that people across the world are increasingly turning to the internet as a first point of reference when they think they have a health problem.  They seek medical help only thereafter.  And here lies the problem.  He also has data to prove that the internet is flooded with sites that do not provide accurate information.

As if to prove what he was saying, was the incident of a friend, whose wife was pregnant and suddenly noticed signs which were not healthy for a pregnant woman.  He first got on to the internet to find out what it meant for a woman to be bleeding while pregnant.  Fortunately for him, he got the right advice and rushed her to a doctor before any harm was done.

This, therefore is a primer on TB.  I am posting a link which gives credible information on TB.  I urge readers to clarify their doubts through this site and then, not delay seeking professional help on time should there be reason to.

http://www.cdc.gov/tb/topic/basics/default.htm

Written by JournalistsAgainstTB

January 15, 2011 at 3:42 pm

Posted in TB and Media

Finding some answers

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We have 9 posts on this blog; we’ve been up for only a week and two days of this week were spent trying to unravel the mysteries of blogging and understanding what a tag means, how to create categories, and what a dashboard does.  I’ve still not found answers to many of these mysteries but have decided to go ahead anyway.  It’s the content that matters, I tell myself and not whether my text is left or right aligned or is in html or visual or whatever.

We’ve had over 550 visitors to the blog and interestingly, the two blog posts that got the most readers were on the media.  One was entitled Why does TB not make News? and the other was Media as stakeholders to Public Health – where are we? This tells me two things.  One, that this kind of initiative is sorely needed and two, that more people like me across the world are grappling with how to negotiate space for TB in the mainstream media.  And we’re all fighting a losing battle.

Having raised questions, I feel obligated to debate some answers as well.  Let’s deal with the first.  Why does TB not make news?  My possibly uneducated guess would point to the fact that TB is viewed too narrowly as a medical problem and medical problems per se do not consistently make news unless they are epidemics like H1N1, which need restrictions on travel and other precautions, and the media therefore responds promptly. Other medical problems make World Health Day supplements, they make special editions or advertorials or they make it to science and medical journals.

Here are some gaps on TB coverage that strike me as odd.  Where are the people in stories on TB?  Have we projected them adequately to the media as the primary stakeholders and that their stories need to be told?  Have we approached the media with adequate confidence that TB is not just a medical problem and has very strong linkages to the way we live, the way we eat and in fact even in which country we live?  Have we explored its linkages to lifestyle issues such as substance and alcohol abuse?

We tout repetitive figures and statistics but what about the faces behind the figures?  What about the little orphan child who has lost her parents to HIV and lives with her destitute grandmother, and has had two attacks of TB which have ravaged her frail form?  And all because we don’t have good diagnostics that can catch her problem in time.  And that the drugs currently available are too unpalatable for a little child to stick to for six months.

Human stories aside, projected interestingly, TB can in fact find its way to business journals  as it can be linked to levels of GDP and productivity of people sick with TB.  It can make great political stories as it can throw insights into the way a country is governed and what the powers that be are doing towards poverty alleviation.  I read an interesting story the other day, where several employees working in plushly appointed call centres are falling sick with TB.  These were all employees who hailed from very humble backgrounds and possibly lived in congested areas and localities.  Does this not tell us that they live in skewed circumstances, one in their work place and one outside?   It made an interesting story and actually found a whole page in a prominent paper.  And yet, this is an exception rather than the rule because think TB and we think science.

The second relates to networking and partnerships.  Without meaning to point fingers or find fault, do scientists and researchers (social science researchers included), make concerted efforts to engage deeply with the media?  Aside of the stray press conference around their events, do they invest time in the media?  I speak for India when I say that hungry as I am to build my knowledge on complexities associated with health, be it TB, HIV or the broader public health, I am starved for resources who will provide me with information.  I am one of the lucky few who has access to some very able and willing people who will readily speak with me.  But is this true across the board?

So the issues could be brought down to the projection of TB beyond the science and of sustained engagement with the media.  This calls for much more investment in the media, without expectations of immediate results.  And this must not be on mere trainings, but something much deeper.  It calls for creation of networks of experts, media members and other stakeholders; it calls for much more exposure for the media to international developments, particularly the vernacular media. It means creating a passion in the media to report on TB and this takes time and it takes money.  The dividends will be richer than the investments!!

Bharathi Ghanashyam

Written by JournalistsAgainstTB

January 12, 2011 at 3:51 pm

Posted in TB and Media

REACH Lilly MDR – TB Partnership Media Awards. Deadline – 25 January 2011

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As I said the response to this blog has been heartening. I have a request from Anupama Srinivasan of REACH to post this announcement on Journalists against TB. So here goes!

About REACH

REACH is a Chennai-based non-profit organisation working on TB care and control for over ten years. The REACH Lilly MDR-TB Partnership Media Programme, a joint initiative of REACH and Lilly India, focuses on improving reportage on TB across India, through workshops, a fellowship programme for journalists and media awards to recognise effective reporting on TB.

The second edition of the REACH Lilly MDR-TB Partnership Media Awards has been announced and is now open for entries. Print Journalists from across India may submit published stories on TB in any language, by 25 January 2011 to reach4tb@gmail.com or call 9791017202 for any clarifications. For a full list of criteria and rules, please see www.tinyurl.com/reach4tb

Written by JournalistsAgainstTB

January 11, 2011 at 4:06 pm

Posted in TB and Media

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, http://www.thelancet.com 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

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