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Catching the ‘blood seeds’

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The place: A village in Northern Karnataka, India, some years ago…

It was a typical Indian village marked by labyrinthine rough-hewn paths, lime-washed houses with tiled roofs, a central temple and little shops with shampoos, snacks and fairness creams in affordable pouches, hanging from strings. The little shops also offered mobile recharges. Swachchh Bharat was yet to be rolled out so toilets were conspicuous by their absence.

I met him in the Dalit quarter of the village. I don’t know if he is still alive but his image is vividly etched in my memory like a portrait cut in stone. He was an unemployed carpenter, too unwell to work, as he was suffering from TB. He sat outside his house on a dirty stone slab. An open sewer flowed past his house, leaving behind stench and hordes of flies. Knees drawn up tightly, unmindful that his trouser buttons had come undone, his eyes were restless, but his body drooped with fatigue. His skin had an unhealthy pallor to it.  Given to excessive drinking, he was also suffering from withdrawal and depression as the local liquor shack owner had denied him alcohol because of his inability to pay. He had not taken his medication for days but the bigger problem he was grappling with was his inability to access alcohol.

The story playing out in his one-room, windowless dwelling behind him was even more dramatic. Deserted by his wife and children, it was his aged mother who cared for him. She was blowing life into some twigs she had collected, to cook a meagre evening meal for her son. This was from food materials she had borrowed from neighbours. She was unable to buy food as there was no money in the house. The house had not been cleaned for days and litter lay all around. She told me tearfully that her son had no wish to live and was refusing medication for his TB.

To sum up this story, a patient was about to give up on medication; he was not only in danger of losing his own life, he was capable of spreading his infection to his mother and several others around him. The causes for his present state of  despondency and lack of will to live were many. But he was being treated only for TB.

There had been no attempt on the part of the system to address his depression, alcohol dependence or lack of will to live. Doing this would not only have helped him, it would have spared the others who came in contact with him. It would have prevented the ‘blood seeds’ from falling to the ground.

1=10=100=1000=10000

The Hindu epics are full of sub-plots and stories. Among them are the stories of rakshasas (demons) who shed rakta-bijas, or blood seeds. These rakshasas had the ability to reproduce several replicas of themselves out of every drop of blood that spilled out of them when the heroes attempted to vanquish them. The stories also talk of how ways were found to catch the drops of blood before they fell to the ground so as to prevent more rakshasas from being born.

Contrast this with TB. Each patient is said to be capable of infecting at least 10 others, before s/he becomes non-infectious. That makes for a mathematical nightmare if one were to consider the number of people among us who are in the infectious phase. The reference to rakshasas here is NOT to the patients but to TB and the ‘blood seeds’ reference is to the bacilli residing in them.

TB control – looking at it symptomatically

Given this situation, what do we do? We go at TB symptomatically. We ‘treat’ TB. We spend millions of dollars on diagnostics and medication and preventive vaccinations. I need to quickly say, this is NECESSARY. Curative services for TB are an imperative. But how do we kill the rakta bijas? What is prevention in the context of TB? It is not, and I repeat, it is NOT only vaccines. It is much, much more.

It is about creating an environment that is hostile to the spread of TB. The presence of TB in a society is an indication that that society has failed to achieve any or all development goals. It is undoubtedly an indication that hunger, housing, sanitation, employment, poverty and other indicators of development are wanting. There are enough examples to prove that low-burden countries have all these basic amenities in place. And this means that TB did not find willing hosts to live with in these countries.

At ‘Time to end TB – a new path to defeating the world’s oldest epidemic’ a meeting held on 20&21 June 2017, at the Wilton Park, West Sussex, United Kingdom, several rounds of deliberations were held on multi-sectoral collaborations and ways to enable the achievement of the SDGs. These deliberations, were they to find action, would have a direct bearing on TB control.

The eradication of hunger, while not directly related to TB, would result in healthier people with stronger immune systems; the creation of better housing would result in lesser transmissions of TB; good sanitation, assured employment and a more predictable way of life would sure result in healthier people, less vulnerable of contracting TB.

It would then mean that the ‘blood seeds’ are caught before they fall to the ground and we would have defeated the numbers – finally.

Bharathi Ghanashyam

 

 

Written by JournalistsAgainstTB

June 25, 2017 at 2:43 pm

Fixing India’s TB control policy

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Despite having a focused TB control programme for over five decades, India faces the ignominy of having the largest number of TB cases in the world. Non-compliance, confusion and poor implementation of government policies mark the failure of the system, both private and public, in providing quality treatment for TB to those who need it. Who will clean up the mess in the TB sector?

Dusk is falling on a day that has seen intermittent rains. Shanti Hospital in Bagalkot, Karnataka, is teeming with patients, many of who have travelled long distances to reach there. One of these is Mahboob Kushtagi (28). Married recently, he works as a supervisor in a granite company and earns about Rs 4000/- per month. He looks anxious and speaks haltingly; as if afraid that every word he utters will worsen his condition. “My travails began a year ago when I felt a swelling in my neck region which kept getting bigger,” he says. “Since then I have been to several doctors and have already spent Rs 20000/- on tests and medicines, not to count the work days I have lost. But I feel no better; in fact the swelling is much bigger now. I have lost weight and feel ill all the time.” Pointing to Dr Shafeeullahkhan Inamdar, a chest physician he has been directed to, he says tiredly, “I hope I get relief here. I don’t know where else to go for a cure.”

Dr Inamdar fills in the details, “His old records indicate that Mahboob was first treated for TB Lymphadenitis based on suspicion alone. The second doctor he went to conducted fine needle aspiration cytology (FNAC) on him. Though the results did not indicate evidence of it, he was again treated for the same condition. After a year he sought the opinion of an ayurvedic doctor who ran some scans and decided it was more prudent to refer him to me. I will do an excision biopsy and treat him based on the diagnosis.”
If her weight was the only indication of her age Ratnamala Melnada (53) would be eight years old. She weighs only 28 kgs and is a very sick person. Weakened to the extreme, she mumbles incoherently when asked questions. Her daughter replies on her behalf. Much of her past medical history is not clear; what is clear is that after recovering from an attack of TB more than 20 years ago, Ratnamala often took her old prescription to chemists and used anti-TB drugs to cure herself of normal coughs and colds. She is presently suffering from TB but is not responding to anti-TB medication. Her daughter swallows the lump in her throat and admits that if her mother were to die, she will be all alone in the world.

Mir Saheb (60) lives in an airless, dark, dank, two room tenement. His family of four other members including his one year old granddaughter lives with him. He sells ice cream and has to sometimes cycle 20 kms a day to make a decent living. He has recently been diagnosed with TB and put on the DOTS regimen. His granddaughter is very attached to him and he can be seen holding her and playing with her. But no family member has been counseled on the dangers that he poses to the little child. Nor has the child been put on prophylaxis treatment as recommended by the national TB control programme and in compliance with international standards of TB care.

If there is one thread that links these stories together, it is the failure of the system, both private and public in providing quality treatment for TB to those who need it. There are some tough questions that need immediate answers. Why was it so easy for Ratnamala to buy anti-TB drugs over the counter? Why is Mir Saheb’s little granddaughter so vulnerable and unprotected? Will Mahboob finally get the right treatment?
This story was researched from Bangalore, Bagalkot and Badami in Karnataka. It was difficult. While the latter two places at least provided answers, doctors and laboratories in Bangalore refused to take calls from this writer and in cases slammed phones on knowing who was calling.

Despite having a focused TB control programme for over five decades, India faces the ignominy of having the largest number of TB cases (26 per cent of the global total according to the Global TB Report 2013). Drug resistant strains of TB are on the increase and as per the same report India is estimated to have 64000 cases of MDR TB. In the year 2012, two important measures were introduced by the Government of India which could regulate the TB sector – the ban on serological tests for detection of TB and mandatory notification of TB cases being treated in the private sector. Compliance to both is poor, in fact nearly non-existent in the places researched for this story. Additionally, efforts to buy anti-TB drugs over the counter proved easier than buying cough lozenges in all three places. The real life instances quoted above also point to multiple problem areas such as lack of standardised practices, lack of accountability and rampant flouting of rules and norms.

It is a known fact that over 65 per cent of those who need anti-TB treatment in India go to private healthcare facilities. What quality of care do they receive? Dr Kiran Kalburgi who owns Kalburgi Nursing Home, Bagalkot says, “When I initiate a patient on anti-TB treatment, I have no mechanism to track whether s/he has completed the treatment. It is for the patient to complete the course of treatment. I have neither the inclination nor the time to follow-up on his/her progress.” Asked if he is not worried that the patient who drops out would be vulnerable to DR TB, he shrugs and is non-committal.

Speaking about the mandatory notification order, Kalburgi says, “I have not received any information about this. Even if I did, I would not be interested in notifying the government if it meant mountains of paperwork.” Kalburgi was not alone in his ignorance of the order. Very few doctors this writer spoke to knew about it. Inamdaar gives the situation another perspective, “Doctors in the private sector very commonly treat patients on suspicion alone. How will they notify when they have no evidence that they are treating confirmed cases of TB? Besides I have not seen any efforts by the government to sensitise doctors to the need to notify. The situation calls for much more than government orders (GOs) which remain on paper. It needs stricter enforcement.”

Pradeep Mane, Senior Treatment Supervisor, District Hospital, Bagalkot says, “We agree that the efforts to convey information about the mandatory notification have been inadequate. The response however is poor even in the few places we have conveyed the information. Doctors are reluctant to give us details fearing that there will be too much of documentation.”

Dr Nalini Krishnan, Director, REACH (Resource Group for Education and Advocacy for Community Health) points out, “We have belatedly put in regulations when the challenge of MDR TB is grave. RNTCP approaches private healthcare providers with a take it or leave it attitude. Notification of cases has to be facilitated with due consideration given to patient identity and confidentiality issues.” Krishnan observes that all is not well with the government system too, “We know that there is 17-20 per cent MDR-TB in re-treatment cases within the RNTCP itself which means that patients who have been on DOTS are coming back with drug resistance. This definitely raises questions about the quality of DOTS.”

Abhay Kumar, President, Indian Pharmacist Association (IPA) admits, “We know it is not healthy practice to dispense Schedule H drugs across the counter. But pharmacies in India are completely unregulated. We need stricter enforcement of the Drugs and Cosmetics Act. As per a survey we conducted in Mumbai, qualified pharmacists are almost never present in shops. There is almost always only a sales person dispensing drugs. The drug control department must be much more alert to such malpractices.”

Dr Gutta Suresh, National Coordinator for TB Control, IMA (Indian Medical Association) says, “Private practitioners are important players in the healthcare sector in India. It is evident that if the public health system was robust, there would be no demand for our services. We have supported mandatory notification, subject to certain conditions like protecting patient confidentiality. While it is early days yet, we know the weaknesses with regard to enforcement in India. The Drugs and Cosmetics Act which is more than 50 years old is yet to be enforced fully. So there are concerns about whether enforcement mechanisms are in place for this. Given the situation we need to be regarded as partners.”

So where does the buck stop? Who is to clean up the mess that the TB sector seems to be in? Most obviously the government. Madan Gopal I.A.S, Principal Secretary, Department of Health and Family Welfare, Government of Karnataka however says it a little differently, “The private sector in India is weakly regulated with specific reference to compliance to the quality parameters and adherence to legal provisions. Public interest is required to deal with TB and similar communicable diseases. Professional bodies such as IMA should take a lead in this. Availability of drugs without prescriptions is an issue not only for TB drugs but also other drugs. This calls for responsible business practices by the owners of pharmacies, better consumer awareness and punitive measures against those violating norms.”

Authorities from RNTCP, despite several efforts to get responses, remained silent and did not respond at all. While the debate goes on, point and counterpoints are raised, it is important to remember that Mahboob, Mir Saheb and Ratnamala are not ‘them’. They are ‘us’ and deserve better. Whether it takes coming together, punitive measures or any other, it is time now to get our act together. It might already be too late.

DISCLOSURES:
This story has been written under the aegis of the International Union Against Tuberculosis and Lung Disease (The Union)’s Media Fellowships for Reporting on TB.
The author can be contacted at bharathiksg@gmail.com

First published in http://issuu.com/indianexpressgroup/docs/pharma_onlinedec-1-15_1-54/45?e=5690019/5841113

Written by JournalistsAgainstTB

December 3, 2013 at 3:07 pm

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