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.
Read the compilation by clicking on the link below the picture
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.
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.