TB Is A Social Disease With Medical Consequences

The Partnership for TB care and control in India announced its first Annual award for TB Champion Individual and TB Champion Organization at its recently held National Consultative Meeting in Delhi.

This award has been instituted by the partnership (and is supported by Dr. Madhukar Pai and Global Health Strategies for next five years--2013-2018) to recognize the effort of individuals and organizations working for tuberculosis care and control in India.

The first recipients of this prestigious award were the Hinduja Research Foundation and Hospital in Mumbai in the institutional category, and Dr Nalini Krishnan, Director of REACH, a Chennai based NGO doing commendable work in the field of TB Control in India - in the individual category.

Following are the excerpts from a candid interview given to Citizen News Service - CNS by Dr Krishnan on the occasion of being conferred upon with this honour:

How does it feel like to be the TB champion for India and the brand ambassador for the Partnership?

"I am very honoured as well as humbled by this award. For every award bringing one person centre stage, there are thousands of others who work behind the scenes selflessly for whatever cause they espouse. But for various reasons only a few come to the lime light. So behind this award is my organization and I am accepting this award for REACH and not just for myself individually.

The backbone of REACH is really the field workers and the staff who interact continuously with the TB patients. The reason why we got more into advocacy than anything else is that we actually started by facilitating treatment for TB patients by getting drugs for them from the National TB Programme and enabling them to finish their treatment.

We found that there were innumerable barriers between the 1st day of diagnosis and the completion of treatment (and for that matter even getting diagnosed). So our initial approach was that of a problem solving one. Our network of community volunteers and social workers approach each patient in a customised manner. Every patient has got a story of how she/he got diagnosed and cured (or not cured).

They face innumerable barriers-- financial as well as social—in accessing and completing treatment. We work with the poorest of the poor TB patients whose loss of work days cannot be compensated for in most cases. And then there are issues of social stigma. When we went into the community we found that there were a lot of misconceptions about the disease and people thought that it was a disease of the past. So the first thing was to draw more attention to TB.”

When Did You First Begin Your Work In This Field In India?

We started in 1998—almost the same time when the Revised National TB Control Programme (RNTCP) started in Chennai in 1999-- and we are entering our 15th year of work now in Chennai. Originally REACH was called ACT—Advocacy for Control of Tuberculosis. We decided to increase awareness about TB by using a lot of information, education and communication.

We believe in the power of using people and strong messages. I think constant communication is very important and it drives people to seek care at the right time. We have got our own brand ambassador--a South Indian film actor Suriya-- who has been endorsing our programme and today even in the very remote areas of Chennai one would find TB posters featuring Suriya.

This has gone a long way in creating awareness about TB. Initially we gave a lot of information on TB to Suriya to enable him to understand the issue. Now, whenever we meet him, he asks us for updates on the TB issue and also on the impact of his association with the cause.

It is really important to prepare such ambassadors with the capacity to speak for the cause they espouse. This we do with patient advocates also. They need to relate their own story in the context of the larger audience. So building the capacity of communicators is crucial so that they communicate the right messages in the right language.

It is always difficult to measure the impact of all that we do and can one really measure it in terms of numbers, but then what we communicate or write about has a snowballing effect. I am confident that the more we speak out, the more and more will the patients get the care they deserve.

What changes have you seen in TB control programme over the years and what are the road blocks at the grass root levels?

“I have seen RNTCP from day one when it started in Chennai in 1999. The ideology behind the programme and systems that have developed within it are really laudable. But the issue is that though the programme is there for the people to come and access it, we as civil society have really failed in our duty all these years to actually drive people to seek treatment at the right time.

It is a fundamental human right of all patients to access free diagnosis, free treatment and be cared for within the public health system. But even now we are struggling with the problem of several patients reporting very late for TB diagnosis, and, even when they go to a public healthcare centre, they face many road blocks.

Public healthcare providers still lack the soft skills to actually treat the patient with compassion and care. This might be true for all patients seeking government healthcare, but the problem becomes more critical in case of TB where the interaction between the provider and the patient has to last a minimum of 6 months.

This is very different from seeking treatment for a cold or a cough and if someone is rude, you put up with that as it is for a very short period. So I think that as far as civil society is concerned we have to turn everything upside down and start looking at the disease only from the patients' perspectives and see what it takes to assure them.

Secondly, another very big gap is not paying enough attention to private healthcare providers—right from the traditional healers to the doctors sitting in corporate hospitals—as they are generally the first point of contact for the TB patients.

The program, as it grows, has not kept pace in involving other players and stakeholders. The new RNTCP plans are really laudable and I hope that they really come into practice.”

“Coming back to the grassroots, the life of an individual TB patient is very hard. If they happen to be the bread winner, there is no system to support them in sickness. Many such factors result in the patients not completing the treatment and/or moving into the category of drug resistant TB.

Our studies on patients, who were already declared to have defaulted on treatment, show that at least 25% of them had died. Each of these deaths is really a TB death, but is not counted as one. So it is really heart breaking to see a simple case of TB go into so many complications, simply because of non-clinical reasons. TB is beyond writing prescriptions, it is beyond going to the doctor. It is a social disease with medical consequences.”

How does this award impact your future work in the field of TB?

“This award makes me more aware of my responsibilities and I think I need to be more outspoken. As we are working within the public health system, we tend to become more like their partners. But as civil society members, we should also learn to stand apart a little bit.

NGOs should not work for the government but work side by side with the government, maintaining their own identity and independence. The award gives me an opportunity to step back and look at my role in highlighting the problems of the TB patients. I would like to see more TB forums coming up and would like to build the capacity of patients to come up and speak out as no testimony is as good as the patients' testimony.

I would try to build my own capacity to take the job of brand ambassador for TB control very seriously, drawing attention of the right people at the right time to TB—especially in policy formulation and implementation. I would like to engage more celebrities, people in power and high profile people in the media for the cause of TB care and control in India.”

Shobha Shukla, Citizen News Service - CNS
(The author is the Managing Editor of Citizen News Service - CNS. She is a J2J Fellow of National Press Foundation (NPF) USA. She received her editing training at Academy of Literary Arts and Publishing, Singapore, has worked earlier with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent.

She also authored a book on childhood TB, co-authored a book (translated in three languages) "Voices from the field on childhood pneumonia", reports on Hepatitis C and HIV treatment access issues, and MDR-TB roll-out. Email: [email protected], website: http://www.citizen-news.org)