Engage affected communities as equal partners to wipe out TB

In the last week of March, 2012, I received an email from a stranger living in Chandigarh, requesting for counseling as his 34 years old wife was suffering from TB. This is his tale of woes about the problems faced by her and the family who are living in a metro city of India. 

She has three kids aged 9, 3 and 2 years. She was first diagnosed with TB in 2006 in Bhopal, where her husband was working at that time. She took a full 8 months treatment course at the DOTS centre located in Kasturba Hospital, Bhopal, and her eldest daughter, who was 2-3 years old at that time, was also given the isoniazid preventive therapy (IPT) treatment. Later the family shifted to Chandigarh. In February this year (2012) she began to cough again but did not reveal it to her husband or anyone else in the family. Her condition worsened but even then she was reluctant to have a TB test done. After much persuasion she finally got the test done on 14.3.12 at the DOTS centre in Sector 45, Chandigarh. She took the first dose of alternate day therapy on 16.3.2012. But her husband got her tested again at Post Graduate Institute of Medical Education and Research (PGI), Chandigarh. The test report, which came out to be negative, was shown to the treating doctor who made no changes in the treatment. So, at present she is undergoing the 8 month treatment under category 2, which began on 16th March, 2012. Her 2 and 3 year old kids have not been tested but are also on IPT -- daily dose of half a tablet each. Her eldest daughter and her husband have got tested, but he is not satisfied with the lab test done at Sector 45 as the people there did not want to test them in the first place. So he is planning to get tested at Sector 22. 

The husband of this patient wrote to me in desperation asking for counselling and guidance which he said was not given either at PGI Chandigarh or at the DOTS Centre. No infection control precautions were given in writing. She was casually told to cover her mouth, sleep separately, change the bed sheet and pillow cover daily and avoid spicy food. The husband was aggrieved at the callous attitude of the staff at the dispensary of the aforesaid DOTS centre. 

On getting an SOS email from him on 30th March (Friday), I contacted Dr K S Sachdeva, CMO, RNTCP, Ministry of Health & Family Welfare, requesting him to suggest somebody in Chandigarh, who could be of help. Dr Sachdeva was kind enough to respond immediately. He said that, “I am marking this mail to State Tuberculosis Officer Chandigarh and RNTCP Consultant Chandigarh who will respond to your mail and do the needful. In case you do not hear from them by Monday (2nd April), do let me know. I shall make a personal request to them in that case.”

I got a call from Dr Anil Garg, the State TB Officer, located in Sector 22, on Saturday, the 31st of March, apologising for the lack of counselling at DOTS centre and assuring me of all possible help. He asked me to pass on his mobile phone number to the aggrieved party, which I promptly did. This is what the husband wrote back to me:“We are grateful to you for resolving our problem. We spoke to Dr. Anil Garg over phone and he gave us a patient hearing and resolved our immediate concern-- that of getting the injections (DOTS Cat-II), as the nurse at the centre was very fussy and had earlier repeatedly told us to get the medicine injected privately. Now the issue is resolved and the attitude of the entire staff at DOTS-45 has become very good.”

I have not heard anything further in this regard.  But the question which plagues me is that if such cases can happen in a big city, then one shudders to imagine the situation in semi urban and rural areas; when even educated persons find themselves totally at the mercy of the whims of healthcare staff, how can one expect the poor and underprivileged to seek free TB treatment (or for that matter any other treatment) in the government setup. The general perception in the common public is that government health facilities are no good and that free treatment/tests are likely to be substandard. This may be far from true, as we have the best of professionals in the government hospitals. But an apathetic and careless attitude, coupled with a lack of accountability, erodes the confidence of the general public, which does not bode well. I came across another case in Lucknow where the poor parents of a 6 year old TB patient were repeatedly told by doctors at a government hospital to seek treatment in the private sector, and it was only several pleadings and hospital visits later that some ‘kind’ doctor referred them to a DOTS centre.  

It seems to be more a rule than an exception in our healthcare system to seek some ‘source’ or intervention from higher authorities in order to access treatment which is rightfully ours. It is cases like this which erode our faith in the government health programmes (because one stinking fish can spoil the entire pond). Sector 45 DOTS Centre is not a stray example of the utterly callous attitude of our health care workers in general. There are DOTS centres lying closed, or having shortfall of medicines (which reportedly resulted in the death of a DOTS provider MDR TB patient in Lucknow), or not having a patient friendly approach. Such wilful neglect and deliberate indifference towards a serious health problem like TB is already contributing in the spread of the drug resistant forms of the disease and taking us away from the goal of zero TB deaths in our generation. Quality counselling and community education/participation in TB care is so vital and yet so woefully lacking in our National TB programmes. 

Experts have repeatedly emphasized that unless we control adulthood TB, children will continue to get TB. And unless we the change the way we do TB control, adulthood TB is unlikely to be controlled. The TB programme is still very medical and the Patients' Charter for TB Care – which outlines the rights and responsibilities of people with TB and sets out ways in which patients, communities, health providers and governments can work as partners with a view to improving tuberculosis care-- is sadly not implemented to the extent it should have been. In fact most TB patients (including the one from Chandigarh) in India are unaware even of its existence.

With TB being made a notifiable disease in India with effect from 7th May 2012, it becomes all the more crucial to adopt a very sensitive approach which ensures that no negative public health or social justice outcome is allowed to negate the gains made by TB control measures in the past years. Genuinely engaging affected communities in TB programmes as equal partners with dignity; ensuring quality counseling in the public and private TB programmes; improving TB treatment and health literacy; addressing TB related stigma; integrating TB programmes with other development programmes such as those on nutrition, sanitation, harm reduction, HIV, and monitoring irrational use of drugs will go a long way in yielding sustainable and positive public health outcomes.

Shobha Shukla - CNS
(The author is the Managing Editor of Citizen News Service (CNS). She is a J2J Fellow of National Press Foundation (NPF) USA. She 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 (2012), co-authored a book (translated in three languages) "Voices from the field on childhood pneumonia" and a report on Hepatitis C and HIV treatment access issues in 2011. Email: shobha@citizen-news.org, website: http://www.citizen-news.org) 

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