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Day Two – TB is an Everyday Fight, Let’s speak Up

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Day two  of The Lilly MDR TB Partnership and Aequum Mentorship for TB Advocates was an exciting one. Vibrant discussions were held on the severe need for advocacy in the TB sector. The participants who came in with rich experience and learnings from ground levels on the gaps, the challenges and the problems that TB patients face during their journey from ill-health to good health, were quickly able to identify areas for change. The day also helped them to debate on different forms of communication which would be relevant for each category of patients, and give them accurate information and awareness on diagnosis, treatment and cure. There was special emphasis on the use of communication methods which could be simple for the unlettered to understand. Textless communication, the use of dolls and other methods were discussed. Some photographs:

IMG_0643Photo Credit:Rajeev Biswal

This story showed gender discrimination. Notice the boy on the right, enjoying the joys of childhood while his sister cooks, does household chores and fetches water.

IMG_0653Photo Credit: Dhananjay

The photograph above shows how the participants used dolls and toys available within arm’s reach to tell stories of change. This story demonstrated the entire ‘cough to cure’ pathway of TB. It showed diagnosis, treatment, nutrition and cure.

IMG_0650Photo Credit: Rohit Kumar Lal

The story above shows the ‘Swacch Bharat Abhiyaan’. Notice the toilet made of modelling clay on the extreme right, used as a store room for household articles. Also note the little girl defecating in the fields and the health of the family deteriorating and their having to visit doctors.

The participants demonstrated with strength that the means for effective communication is at arm’s reach. Creativity, accurate information and commitment is all it takes. The mentees deserve special kudos for this.

Written by JournalistsAgainstTB

July 8, 2015 at 9:43 am

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.

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

First published in

Written by JournalistsAgainstTB

December 3, 2013 at 3:07 pm

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