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Welcome to Journalists against TB!

23.07.2016

It’s been a long time. But JATB hasn’t been idle. In the interim, with the support of Institute of Tropical Medicine, Antwerp, Belgium and Damien Foundation Bangladesh, JATB has produced a little booklet of patient stories. These are patients who have received 9 months of treatment for MDR-TB in Bangladesh, and have recovered and are leading happy, productive lives. This compilation was done in order to allow the patients to speak out. In this little collection of stories, they express themselves as only grassroots communities can – from the heart.

I set out to write these stories to make up for a gap I saw. While there were excellent papers that appealed to the academic and scientific community about the short, 9-month treatment regimen which was being so successfully implemented in Bangladesh, the patients were conspiciously missing. They were just numbers, albeit successful ones. The recent efforts in the TB sector to empower cured patients to come out and tell their stories emboldened me to attempt to speak to the beneficiaries of the 9-month regimen. And the results are there to see.

It needs no retelling here that if this regimen can be implemented across the world, patients who otherwise go through two years of treatment will gain the most. Challenges exist and as Dr Armand Van Deun, the architect of the 9-month regimen says, “The World Health Organization has recently endorsed the 9-month Bangladesh regimen, and even made it the recommended regimen for MDR-TB, something which is beyond our expectations. But it took over 20 years, and there are still too many restrictions for its use, the most important of these being initial drug resistance. The main challenge now for this regimen seems to be the ability to overcome high-level fluoroquinolone resistance reliably, without major modifications that would render the regimen complicated and difficult to use. This would not only save the life of the patient, but also avoid acquisition of additional important resistance and the creation of XDR.” It also needs no retelling that the world owes it to the people to make their lives after MDR-TB easier. Options are available. We need to find ways to use them.

I wish to share with my readers that my brother succumbed to lung cancer exactly a year ago, on this day. This compilation is written in his memory and as part of a voluntary initiative I have begun called the GR Initiative, which is dedicated to preventive health, particularly lung health. I thank Dr Armand Van Deun and his team at Institute of Tropical Medicine and Damien Foundation Bangladesh for giving me this opportunity.

The compilation is written in two halves. The first half addresses the scientific and academic community while the second half will relate to the lay reader as well. JATB hopes this compilation resonates with hope and the joy that accompanies good health.

Bharathi Ghanashyam

Read the compilation by clicking on the link below the picture

Nine months to rebirth

Nine months to rebirth

 

 

 

21.01.2016

As I am about to finish the second week of my scholarship at the Institute of Tropical Medicine, my understanding of TB has widened. This is oft quoted but bears repetition. Robert Koch said, “If the number of victims which a disease claims is the measure of its significance, then all diseases, particularly the most dreaded infectious diseases such as bubonic plague, Asiatic cholera etc, must rank far behind tuberculosis.” My renewed understanding also tells me that TB is not about the pill alone but is much, much more. An excerpt from Improve living and working conditions to wipe out TB published by Deccan Herald on 20.01.2016 and authored by me.

15.01.2016

I am writing this blurb from Antwerp on a cold, bleak winter’s day. I am here on a three-week scholarship entitled Journalist in Residence with the Institute for Tropical Medicine. As I sit by the window in my room and look out, I see men, women and children alike, bustling about, clad to the hilt, walking energetically to work or school, or wherever else they are headed to. They are ordinary, work-a-day people and they are healthy and look secure. My mind wanders and I think of my own country. How many, on a day such as this, would really be equipped to come out of their houses, even those that have a roof? Would they have the right clothing to face such harsh weather conditions? Would they have spent the night under a warm roof, or under a cold, merciless winter night sky? How many of them froze to death during the night and didn’t even get the dignity of a decent funeral? How many of them progressed towards low immunity and would fall sick in the near future? How many woke up to see empty pots and pans and how many would eat a warm meal during the day? I don’t have the courage to face the answer. Because I know the answer would sadden me. And in the same breath, if we have to talk of TB control, then we are living in a world that does not exist.  Read more here.

When I founded JATB, little did I realise the impact it would have. Down the years, this blog has been welcomed as a much-needed initiative, and the TB sector has accepted me, a lay TB advocate as one among them and given me the satisfaction of having done something worthwhile. The credit goes entirely to the sector for the sponaneity with which they have welcomed me and helped me to advocate better. In the years that I have been writing on TB, several things have become better, e.g. there is a visible buzz around TB control, but several things have also remained unchanged. Over the past year, I have met at the very minimum, around 200 TB patients, heard out their stories, given them words of solace and come back frustrated that I could do little else. They came in all forms and sizes and avatars. There were very young children, even some infants; there were youth, on the threshold of the best years of their lives, but who were confined to their beds suffering from an avoidable condition; I met senior citizens who were on toxic medication, unable to bear the severity of the side-effects and stoic about the suffering they were going through. I also met TB patients from all age groups who could have recovered much faster, had they only had access to good nutrition. These were the poor and hungry, subjected to the utter indignity of having nothing to eat but the free medicines that had been doled out to them. They were too proud to say they didn’t have enough to eat and some dropped out of medication because the side-effects were too severe in the first place; compounded by hunger they were unbearable. They were then labelled drop-outs by insensitive healthcare professionals at their DOTS Centre and refused further help. What happened to the Right to Food? Talking of side-effects, dozens of these people I met, asked me with pained expressions on their faces, why no one had prepared them for it. What counselling did they receive? The answer to this is a resounding NONE! Who announces to a TB patient that s/he is diagnosed with TB? Is it a doctor? A nurse? It is a lab technician and I saw this happen. Impersonally, insensitively, the patient was prounouced positive for TB, handed medication, not from his/her own box but a general pool because it was too early to tell whether the patient would drop out and if s/he does, government resources get wasted. There was no effort whatsover tell the patient what to expect in the first few weeks of treatment. I met patients in small towns who go to the private healthcare sector. Contrary to what I expected, going by the news one reads about the unregulated practices in the private sector, what I encountered on the field was quite different. The basic problems of TB patients who sought care from the public, or private healthcare facilities (such as poverty or hunger) were the same, but they seemed quite satisfied with the care they had received from private doctors. This is not to say that the sector is not without its bad eggs, but we have to admit that there are an equal (if not more) number of bad eggs in the public healthcare sector too. I know that this is anecdotal evidence and not enough to satisfy the scientific community which demands numbers and data. But this is what I am equipped to do and this is information I think needs to be shared. If I have not shared any of the stories that emerged, it is because I wrote them on behalf of different agencies and they don’t belong to me. What do I want to finish this message with? Just a few words – Reach out, Counsel, Provide Nutrition, Be Sensitive, Be patient-centred. How can we not gain control if we do all this, every day, every hour and every minute? World TB Day is important – so are all other days. This is an EVERY DAY fight. To add to this fight, through AEQUUM, my development communications consultancy, I have been fortunate enough to receive the support of the Lilly MDR TB Partnership to build capacities of 15 lay TB advocates. Find the reports here.  We are attempting to SPEAK UP; we are attempting to carry out this fight EVERY DAY!

Aequum and JATB are also trying to change the face of TB Communication. Find the post here.

As a part of the fellowship received by JATB, two stories were published by mainstream publications.  JATB has also been contributing to the mainstream media fairly regularly. Links to these are pasted below: http://www.deccanherald.com/content/458962/tb-much-more-bacteria.html http://pharma.financialexpress.com/sections/management/3054-fixing-india-s-tb-control-policy http://www.deccanherald.com/content/380541/india039s-fight-against-tb-undermined.html JATB hopes that this year’s World TB Day will translate into action for all those that need it and that TB will be a thing of the past in the very near future.

 

Bharathi Ghanashyam

Written by JournalistsAgainstTB

January 15, 2011 at 3:14 pm

26 Responses

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  1. Dear Bharathi,

    Congratulations on this endeavour! Hope this group can connect with TB competence group at http://aidscompetence.ning.com/group/tbcompetence. We would like to learn from your experience.

    Regards,
    Rituu

    Facilitator Share, Constellation Support Team
    http://www.communitylifecompetence.org
    http://aidscompetence.ning.com

    Rituu B Nanda

    January 20, 2011 at 7:24 am

    • Will do Rituu. Thank you so much for your encouragement. I talk for the entire group when I say we will be happy to be a part of the TB competence group.

      JournalistsAgainstTB

      January 20, 2011 at 7:38 am

  2. Dear Mam

    Congratulations on this very important and timely venture, much needed as TB is never an issue for mainstream media. We hope this will be a platform to learn, network with like mind people, create awareness and work together to address TB effectively. All the very best and hope to see updates on civil society initiatives.

    Regards
    Ramya

    Ramya Sheshadri

    January 20, 2011 at 8:46 am

    • Hi Ramya,

      your encouragement feels great! Look forward to you visiting our blog often. Do subscribe to it so you can get intimation whenever there is an update. Also invite you to contribute on the legal aspects of right to treatment, IPR issues, patents etc.

      JournalistsAgainstTB

      January 20, 2011 at 9:34 am

  3. Commendable initiative, congratulations !
    Hoping to see more of it.

    Arun

    March 24, 2011 at 7:46 am

    • Thanks Arun. You will surely see more of this. Would you like to subscribe to the blog so you can get to see the latest posts? It’s free🙂 Also pass the message on!

      JournalistsAgainstTB

      March 24, 2011 at 9:11 am

  4. Thank you so much and congratulations on this endavour! Together we can make a difference!

    Andreas Sandgren

    March 24, 2011 at 12:50 pm

  5. Congratulations and I want to circulate this message to others also can I?

    N.M.Devendrappa

    March 25, 2011 at 5:08 am

  6. a very good intitative my sister keep it up, it could assist many of us to know the status and stands of TB in the whole world, so les keep the ball rolling. By the way, try to talk to Winnie, her country Swaziland is undergoing difficult times police a brutally killing people who are protesting against the monarchy

    mathapeli Ramonotsi

    April 12, 2011 at 7:54 am

    • Will do my friend. Do you want to send me the situation from Lesotho for our blog? We welcome guest writers!

      JournalistsAgainstTB

      April 12, 2011 at 1:46 pm

  7. Dear Bharathi,

    Just discovering this initiative, looking forward to next steps.

    Thought you might like to check an ongoing virtual panel discussion where experts from FIND, WHO, etc. and health implementers from around the world are debating the feasibility of implementing Xpert MTB/RIF in high-endemic countries with limited resources. You can view the discussion here: http://www.ghdonline.org/drtb/discussion/ghdonline-expert-panel-challenges-in-rolling-out-t/

    Everyone can sign up and participate for free. The panel runs until May 20.

    Sincerely, Sophie

    Sophie Beauvais

    May 16, 2011 at 12:36 am

  8. Dear Bharathi,
    I was going through all the comments and responses above. I congratulate you for the tremendous work. Presently, the media role in TB control is not much beyond the usual sensitization meetings and all that. I have not seen any article appreciating role of front line workers ie DOT Providers or how some one fought TB against all odds and got cured. A lot is left to be done in this aspect.

    Jitendra S

    August 1, 2011 at 11:29 am

    • Exactly my thoughts Jitendra. Can you give me some information on what is being done in this direction so that I can write about it. you can write to me on my mail id.

      JournalistsAgainstTB

      August 2, 2011 at 2:50 am

  9. Dear Bharathi,
    It was good to meet you in Lille a few weeks’ ago. I enclose a link to my report on TB and Diabetes, I hope you find it interesting. I shall keep you posted with my work in this area too. I hope you had a good trip home!
    Best wishes
    Helen Sharp
    http://www.bbc.co.uk/programmes/p00ldzpv

    Helen Sharp

    November 14, 2011 at 8:02 pm

  10. Madam,
    Congratulation.. i’m a medical student.. i did a research on the topic “A Study on knowledge, attitude and stigma on tuberculosis among the general public” few months back.. Madam where can i publish my research article? Can you help me if you don’t mind?

    Jishnu Jayaraj

    November 15, 2011 at 3:00 am

  11. Dear Bharathi,
    Congratulation…i m HIV+ past 1994 & Activist for HIV/TB PLHIV’s last 10yrs…More then 60% PLHIV die due to HIV/TB in India…We r worry about timely diagnostic-treatment & monthly DOTS at ART Clinic’s under follow up of ART doctor…We also needed Healthy Nutrition to PLHIV at time of HIV/TB treatment course…Some HIV/TB Patient are Self Afford the DOTS & MDR treatment…In Some Cases Confidentiality of HIV/TB Patients also Brake at DOTS Centers in India…Kindly do needful..keep in touch for all.

    Hari Singh

    September 9, 2012 at 1:25 pm

  12. Nice work. Keep it up!

    prashanthns

    January 27, 2013 at 9:41 am

  13. The work you have done is both amazing and praiseworthy. Keep it up and keep going.

    S

    January 27, 2013 at 10:55 am

  14. Thank you Bharathi for mentioning the ECDC documentary on extrapulmonary TB! As the example of your friend with intestinal TB shows it happens over and over again that people go for a very long time suffering from pain and other problems before extrapulmonary TB is discovered.

    Andreas

    March 25, 2013 at 8:39 am

  15. Keep up the good effort.

  16. Thank you Bharathi for mentioningTB shows.The work you have done is both amazing and praiseworthy.
    Radhey Lakhan Prasad
    Secretary
    Lok Sevashram Chiksaura
    Nalanda,Bihar

    Lok Sevashram Chiksaura

    March 25, 2015 at 5:13 pm

  17. Good efforts..
    Best wishes.

    Rajbir Singh

    July 23, 2016 at 3:03 pm


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