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A case of mistaken Identity

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Deena and I were sitting at her table completing paper work after the morning rush of patients had left. An attendee from the hospital came into the room to clean it. She suddenly grunted at me in an irritated manner and told me to go sit outside. I was a bit stunned at the tone of her voice but thought nothing of it. Deena continued writing. I got up and stood in a corner of the room, to let her mop in peace. She suddenly looks at me again and says “For god sakes go and lie down on the bench outside”. Now I was totally confused, a little angry and a little nervous of this woman who was glaring at me. I stood there feeling like a 5 year old, who had done something wrong and dint know it. “She’s a staff from the main office” Deena says grinning.

I realised then the lady has mistaken me for a patient. She of course sweetened immediately, apologising and reassuringly asked me many questions of what I had come to do. TB patients are, from what I have seen at the bottom of the ladder. When they come to us they are sick, unable to work and often isolated by their families. They are sad and troubled and always ask “Why me? What did I do to get this disease? So if I was a patient sitting there, I might have not been surprised at all by the woman’s attitude. As someone that works in healthcare I have noticed that the proximity to the ability to heal, leaves most people with a power complex.

It gives doctors, nurses, trained health workers, health researchers, hospital attendees, and security guards – the ability to blame, judge and undermine the patient. It allows us to be critical of institutions, systems and people without being critical of where we fit into the machine, and what we do or do not do to remedy the things we complain of. I have to confess this is not the first time I was mistaken for a patient. The first time I was back at the desk; a patient sat beside me, rolling her eyes and laughed quietly, gesturing at the blister pack on the table thinking it was mine. She seemed to say “you have no idea what you’re getting into do you?” . At that time I remember being thrilled thinking, this was my “breakthrough” ethnographic moment.

Neha Lamech

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Do doctors need to take a second look at TB?

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Delayed diagnosis is not uncommon, especially among TB patient and the consequences are obviously severe. Here’s a story from one of the doctors who had aided in REACH’s efforts, about a patient whose abdominal tuberculosis condition went untreated for about 8 months.

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“A patient Mrs F (name concealed) had continuous diarrhoea for the past 7 – 8 months. She had seen many leading gastro-enterologists in Chennai, and had been put through multiple endoscopies, colonoscopy procedures and ultrasounds but in vain. No diagnosis was made, and the condition persisted in the patient. When she came to me, she was frustrated with no hope of any relief.

The clue that I went on in my diagnosis was her rapid loss of weight – 5 kgs in 45 days – something that was noted by the previous doctors who had examined her also. A TB Quantiferon Gold test was done and confirmed my diagnosis of TB abdomen. The patient has now been started on anti-TB therapy.”

– Dr Sangeetha Balasubramaniam, Consultant physician and diabetes and hypertension specialist, RoyalHospital, Mount Road

 

An interesting perspective from Journalists Against TB

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Why has MDR TB become such a threat to public health? Should the private sector shoulder all the blame?

The recently released WHO Global Tuberculosis Report 2012 throws up some contradictions. It claims that The Millennium Development Goal (MDG) target to halt and reverse the TB epidemic by 2015 has already been achieved. TB mortality rate has decreased 41% since 1990 and the world is on track to achieve the global target of a 50% reduction by 2015. However, it also goes on to warn that multi-drug resistant TB (MDR-TB) is a cause for concern. In terms of numbers, according to the Stop TB Partnership there could be as many as 440000 new cases of MDR TB across the world. The Global TB report says that India, China, the Russian Federation and South Africa have almost 60% of these cases.

Closer to home, India has the highest burden of TB in the world and accounts for around one fifth of the global incidence. Out of 9.4 million new TB cases globally, 2 million are estimated to have occurred in India. Around 280,000 people succumbed to TB in 2009. It is estimated that close to 1000 people die from TB everyday in India.

India has 64000 MDR TB patients (RNTCP Annual Report 2012). Experts however opine that the figure could actually be much higher. Only 4237 cases out of these were notified and 2967 cases were put on treatment according to the Global TB report. Here is the contradiction. TB is an entirely preventable and curable disease. We have what is acknowledged to be among the best national TB control programmes in the world. If our TB control programme was really as efficient as we think it is, why would so many cases of MDR TB be amongst us? Especially considering this is a condition that arises when patients develop resistance to the basic drugs because they drop out of treatment mid-way, or contract itfrom a person already infected with MDR TB? Why is MDR TB making such bold inroads into our country? The private sector has been roundly blamed for the increase of MDR TB in India. I attempted to find out ground up, how true this was.

The TB sector in India is riddled with some problems that prevent it from being completely efficient. Despite the existence of the ambitious Revised National Tuberculosis Control Programme (RNTCP), it is an established fact that doctors in the private sector are most often the first point of contact for a person who is ill. Dr Mukund Uplekar, Medical Officer, Stop TB Department, WHO says, “The problem does not begin as TB; it begins as fever and cough and people don’t rush to the nearest TB facility when they fall ill. Therefore the private sector is the first vital touch point.”

For K (20) too, the private sector was the first point of contact when she fell ill. A diminutive figure heavily swathed in woolens, she lives in a dark, dank house in New Delhi at the end of a bylane dotted with puddles of slush and little mounds of garbage. She is on treatment for MDR TB and angrily recounts that when she suffered from frequent fevers and coughs she consulted several doctors in the private sector. Each of the doctors, in turns, prescribed tablets and syrups, which cost a lot of money but did not cure her. After a year or so she was referred to the government TB programme where she tested positive for TB. The DOTS supervisor at the TB dispensary where K is being treated, says, “We detected that she had MDR TB and changed her treatment when she continued to be sputum positive even several months after she was put on DOTS. She has completed one year of MDR TB treatment and has another year to go.” K’s case and several others like hers that this writer came across, illustrate that management of TB in the private sector leaves a lot to be desired and is also often the cause for MDR TB.

India has the largest private health sector in the world, with 60-80% of health care coming under this category. Private health care includes both qualified and unqualified practitioners.The quality of treatment provided by private healthcare providers for TB is not standardized as per international guidelines. Diagnosis is a problem. The Indian private sector is largely unregulated, and weak regulation results in rampant use of useless diagnostics, and prescriptions of incorrect TB treatment regimens. A recent study from Mumbai, by the Hinduja Hospital, published in Public Library of Science, showed 106 doctors prescribing 63 different drug combinations for TB (while there is only one recommended TB drug combination).

Cases of mismanagement of TB in the public sector too are common. Vedavalli (58), from Pondicherry, Southern India, died a few months ago after prolonged but unsuccessful treatment for TB. Her daughter Radha laments the loss of her mother, “My mother first went to a private doctor for her cough and fever. He diagnosed her with TB and sent us to the government facility, because we would get better and cheaper treatment there.” She can barely prevent herself from breaking down, “The doctors at the government chest clinic treated her for months without any success. My mother continued to get sicker and finally died because her lungs were damaged beyond repair.”

Radha, on her own volition, had sought a second opinion while her mother was on treatment and not showing any progress. Dr Sowmya Swaminathan, Director, TRC, Chennai, says, “When Radha brought her mother to us we tested her blood for levels of the anti-TB drugs Rifampicin, INH and PZA. They were all very low on the first occasion and then showed erratic levels. The drug quality was also checked and found to be alright. She was probably not absorbing the drug properly because of malnutrition or other reasons. Once we increased the dose and made it daily treatment, she responded immediately. She was doing well but suddenly died.”

Radha asks some tough questions. “Why did I have to seek a second opinion? Was it not the job of the doctors treating my mother to refer her? Is this what we get for trusting the government programme?”

Dr Ranganath, a private practitioner in Bangalore who has been practicing general medicine for over 30 years recalls the case of a patient with TB who was forced to avail treatment from the private sector because there was a price attached to every test, every drug and every visit he made to the local government TB hospital – all of which should actually have been free of cost.”

There is obviously a lot of confusion in the TB sector, both with regard to diagnosis and treatment. While the private sector needs to be brought under regulation, it is also mandatory that government facilities get their act together. Gaps in treatment and corruption in the treatment facilities need to be tackled firmly. Blessina Kumar, Vice Chair, Stop TB Partnership, and TB/HIV activist reiterates firmly, “RNTCP has a top down, and not rights based approach. We have to revisit the RNTCP and make changes if required to ensure that the last person who needs treatment gets it with the least red tape.”

Dr Madhukar Pai, a TB researcher, says, “Wherever a TB patient in India seeks care, he is not sure of getting the right diagnosis and treatment. When the patient goes to a private doctor (or unqualified practitioners), there are very good chances that there will be a wrong diagnosis, wrong medication and delays that could prove fatal.” He adds, “Patients with TB are not routinely tested for drug susceptibility by RNTCP before being started on medication. Second-line drugs for MDR-TB are not widely available. There are now excellent rapid molecular tests for MDR-TB but the RNTCP is yet to scale them up. These are very powerful causes for the spread of MDR TB.”

Dr Pai also recommends that RNTCP should feel ownership towards all patients, whether they come through the public system or not. Regulation of the private sector, enforcement of the governmental order that requires all TB cases to be notified, enforcement of the ban on serological antibody TB tests, and a business model at the grassroots level, which incentivizes private doctors for referrals – all these are urgently required for prevention of MDR TB .

TB already causes an estimated 100 million workdays loss due to illness. The country will also incur a loss of nearly US$ 3 billion in indirect costs and US$ 300 million in direct costs (source: RNTCP). MDR TB will exacerbate this problem. It’s time to stop blaming the private sector alone and to recognize that the responsibility for TB control is a collective one.

Bharathi Ghanashyam

Head-Communications, The Akshaya Patra Foundation

This piece is directly accessible on  http://journalistsagainsttb.wordpress.com/2013/02/11/why-has-mdr-tb-become-such-a-threat-to-public-health-should-the-private-sector-shoulder-all-the-blame/

Our long-time associate – CSI Rainy, Royapuram

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Located in Royapuram, CSI Rainy is, as the hospital’s director puts it, “a  private institution where people are sure they can receive individualised attention and care and avoid the long queues of government hospitals, at rates significantly lower than the norm elsewhere.” The hospital has been one of the earliest institutions to work with REACH and allow us a DOTS centre on their premises.

The DOTS centre is a small, somewhat cramped space, but it serves its purpose well – an area just below a staircase with dusty, metal checkered grills, fitted in with a cupboard, and a utilitarian table and chair for our social worker, Mrs Dheena. A standing rotatable fan stands right next to her. She tells me a little about her work hours, and is matter-of-fact about her daily routine as a counsellor and DOTS provider. Then, she starts sifting through a sheaf of charts to find the one she’s looking for – a story that will leave her teary as she recounts it.

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Mrs Dheena, Social Worker, REACH

 She points to a passport-sized photo of a keen-eyed man on the sheet, and the irredeemable ‘Deceased’ marking on it. “He died a few months ago. He was regular on treatment, but he was also HIV positive, and that claimed his life. His wife has also tested positive for HIV, but refuses to test their two girl children for HIV. I’ve been trying to convince her to do that and put them on some therapy, but I’m still trying,” she says, obviously trying to keep her emotions in check, “If the children test positive and can be put on treatment, it may add a decade or more to their lives – but their mother refuses to see this. She says that HIV took her husband away from her and she would rather not know.”

She abruptly puts the sheet aside, and moves on to show me documents of more of her current patients – some of them as young as 4 and 6. Her manner is matter-of-fact again, as she gets up to speak to an elderly couple, who have come with an X-ray result in hand. They look educated, well-dressed and ask her many questions – all of which she answers patiently. When they leave a few minutes later, Mrs Dheena talks again of how a lot of people are more comfortable coming to a private hospital like CSI Rainy, for their DOTS treatment, rather than a government institution – many a times, the patient isn’t treated with much empathy. Sadly, there aren’t too many who have allotted that space, as small as it may be, in this city.

 

 

A first-time visit to a DOTS centre

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REACH is going to document the DOTS centers and workers in the various zones we extend our services to, over the next couple of months. The first one happens to be CSI Kalyani, which is the first DOTS center I visited soon after joining REACH to have a better understanding of how it works. Below is my perspective of the space, as a first-time visitor with little knowledge about tuberculosis:

Above: Mrs Chitra with a homeless patient

“Just one among the many cubicles in the busy corridors of the CSI Kalyani hospital in Royapettah, the DOTS centre obviously does not stand out. It is a small space, the walls plastered with posters on tuberculosis – the actress Khushboo points to a box of DOTS and Suriya gives his thumbs up to the treatment. Our social worker, Mrs Chitra is busy with paperwork, and the cubicle itself is almost half-full with stacked, white DOTS boxes.

A first-time visitor to a DOTS centre (like me), will initially not get its purpose. I mean, if someone is diagnosed with tuberculosis, they’d be sufficiently frightened enough about losing their lives to take their tablets by themselves on time, right? And free tablets at that – all the DOTS boxes are accessible free of cost to anyone, irrespective of their socio-economic status. Just then, a pulmonary tuberculosis patient walks in – a thin, spindle-legged man, dressed in a dhoti and shirt, smiling lazily.

“He’s been irregular with tablets, and is alcoholic,” Mrs Chitra tells me, after introducing us, “I’ve been counselling him. There are many patients who need someone there to ensure they take their tablets on time, who need another person to talk to their families and wipe away the stigma, who need to be educated on the facts of the disease – more than just ensuring that patients take their tablets on time and don’t turn resistant to these antibiotics or develop relapses, we do a lot of counselling here,” she tells me matter-of-factly, just as the patient who is sitting across the table from us coughs violently, without bothering to cover his mouth.

Anyone would reach for a handkerchief, but Mrs Chitra seems unfazed. “We keep telling them to cover their mouths when coughing, we educate them on cough hygiene, but some of them don’t listen. It happens, there have been times, a patient has had a reaction to the tablets and immediately vomits on me. What to do? But if we keep ourselves healthy it’s all fine – I’ve been a DOTS provider for ten years and I haven’t been affected by the disease,” she smiles, almost as if to say ‘see, no hands!’

Yes, we live in an environment where a majority of us probably already have latent tuberculosis and would probably never develop an active infection in our lifetime, but the slightest chance remains – and it must take a DOTS care provider a spine of steel to accept that chance, and think instead about the welfare of the patient, week after week.”

– Krithika Sukumar, Communications Associate