“We must focus upon individual human beings rather than on individual diseases of TB and HIV. A person centric approach is bound to work together than a disease centric approach,” said Mark Dybul, Executive Director, Global Fund to fight AIDS, Tuberculosis and Malaria at a high level WHO consultation, held in conjunction with 20th International AIDS Conference (AIDS 2014), to discuss policies to catalyze the response for elimination of TB deaths among people living with HIV (PLHIV).
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Well almost everything. Tuberculosis (TB) remains the most common AIDS-defining illness and the leading cause of death in people living with HIV (PLHIV) with 1 in 5 HIV-associated deaths in 2012 attributed to TB. At least one third of the 35.3 million living PLHIV worldwide are infected with latent TB. An estimated 1.1 million (13%) of the 8.6 million people who developed TB in 2012 were HIV-positive too.
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It is estimated there are more than 5 million people sick with multi drug-resistant TB (MDR-TB) in the world today, which afflicts approximately 440,000 people each year, including children. Likewise, 35.3 million people are living with HIV out of which 3.3 million are children. Most of these children acquire the virus from their HIV-infected mothers during pregnancy, birth or breastfeeding, while poverty, weak immune systems, malnourishment, HIV, and maternal TB make children more vulnerable to getting TB from infected adults. 74, 000 children succumb to TB every year while AIDS related paediatric deaths are 230,000.
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It was a indeed a humbling experience for me to meet Ajay, a middle aged graduate from Muzzafarnagar, UP. Ajay was one of the rare cases of extensively drug resistant TB (XDR-TB) who had tested negative, but was still under treatment, and recovering in the MDR-TB Ward of Rajan Babu Institute of Pulmonary Medicine and Tuberculosis (RBIPMT), New Delhi, when I spoke to him (or rather he insisted that he speak to me) in February, 2013. He was very keen to share his agonizing experiences with the rest of the world so that others would not suffer the same fate as his due to ignorance about diagnosis and treatment of TB.
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Anirban Mukherjee is from Kolkata. An only child, he is 32 years old and educated till Class 10. No one else, except him, in his family has ever had TB. He has never smoked nor ever eaten gutkha/paan masala, but used to take alcohol occasionally in the past.
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58 years is no age to die. Yet Radha Rangaswamy’s mother Vedavalli died of tuberculosis (TB) in the last week of October 2012 precisely at that age. Her only fault seemed to be her undaunted faith in the public health system of India (the Government DOTS programme) which proved to be her undoing.
Radha recalls that when Vedavalli had bouts of cough and fever in 2010, she went to the government TB centre in Puducherry where she was diagnosed with TB. The doctors there put her on category 1 (CAT1) regimen for TB treatment of alternate day therapy--Monday, Wednesday and Friday. But even after 4 months of treatment her sputum still tested positive (3+) for TB. So they gave her Streptomycin injections. She took 30 injections along with the weekly three doses of medicines like before. After 3 months of this regimen her sputum was negative. So she was put on continuation phase regimen. But within a month she developed complications. After three months of treatment her sputum tested positive again (3+). A drug sensitivity test was done and her medication was stopped by the doctors till the time the drug sensitivity report came. At that point of time, while searching for information on TB through the internet, Radha came across a website edited by Mr Nathan Jeff who put her in touch with Ms Blessina Kumar-- a Public Health Consultant, and Vice Chair- Stop TB Partnership, who went all out to help her. When Ms Blessina contacted the RNTCP people they sent them back to the State TB Officer and got the patient admitted in the Government Chest Clinic Puducherry for a month. Meanwhile the drug sensitivity report showed that she was sensitive to all drugs. Again she was put back on CAT1 regimen for the third time-- injections along with medicines on alternate days. But even after 4 months of this treatment, when the sputum test was taken it was still positive.
Finally, with Ms Blessina’s help Radha got her mother admitted in the TB Research Centre at Chennai for proper investigations and treatment. There Dr.Soumya Swaminthan and her team did many tests and found out that that though Vedavally had been on DOTS therapy repeatedly, there was a negligent amount of drugs in her blood. In fact they found no trace of rifampicin in her blood. They put her on a daily regimen of their own drug supply including Oflaxcin. Just after one month of this treatment her sputum tested negative. But alas! it was too late. Her lungs had already been damaged beyond repair and just as everyone thought she was getting better she died in the last week of October 2012.
Radha is too distraught at her mother’s untimely death, and rightly so. She said to Citizen News Service (CNS): “My mom took medicines and injections for one and a half years regularly as instructed and yet she died. The doctors at Puducherry should have tried to check as to why she was not responding to the drugs despite being sensitive to them. If they were not able to find out the problem, they could have at least told us to take her to Chennai. Instead they repeatedly put her on the same regimen to which she was not responding. For them it was just one of their many cases, but for me she was my mother. Will they ever realise that it is because of their negligence that I have lost my mother today? Will they ever realise the pain? It has been almost 10 days since I called and informed the hospital. But till today nobody has turned up to find out what happened. I had already lost my father and now I have lost my mother. I can never absolve myself of the guilt of not taking her to Chennai earlier, because then she would have lived. This is a nightmare for me. Who is responsible for my mother's death? Is it my fault in believing in the Government health system? I trusted the Government, and what did I get in reward for this faith? I saw my mom dying in front of my eyes and this thought will haunt me for the rest of my life.”
There must be many more such untold stories of neglect and utter callousness. We always make a hue and cry about controlling and regulating the private TB sector, which of course is necessary. But then it is equally important for the government health system to mend its own house of glass and set it in order rather than keep on throwing stones at others. There have been other cases too where the quality of medicines given out at public health centres was found to be suspect. Pushpa Narayan reported the issue of empty capsules of rifampicin in an article in Times of India which quotes a female DOTS provider of Trichy who has found several empty capsules of rifampicin while doling out antibiotics to TB patients. In Tamilnadu itself nearly 7% of the over 4000 drugs tested in 2012 were found to be of substandard quality and did not have the prescribed strength of the active ingredients—which could be fatal in the case of TB patients as has already been proved.
As if this were not enough, misdiagnosis of TB is also rampant. Recently it was reported in the media that Dr Yacha, Head, department of gastro paediatrics at SGPGI, Lucknow lamented that 20% of children brought to SGPGIMS for advance treatment had been wrongly diagnosed and treated for abdominal tuberculosis even though they never had TB but were suffering from some other ailment. This not only left the main disease untreated, but caused severe side effects and made them more prone to DR TB.
Radha wishes that her mother’s death should have some meaning and should not go unsung. She wants to do something, so that no other daughter or son suffers her fate. And Radha cannot be more right. There has to be an end to unnecessary deaths from a treatable disease. Should we as civil society members remain silent? The government owes her an answer. We all owe an answer to the likes of Radha.
Radha is not alone in her sorrow. We are all with her. We have to seek answers to these human lapses at the forthcoming 43rd Union World Conference on Lung Health to be held in Kuala Lumpur, and seek justice from the many government officials who would be attending the meet. They will have to own up responsibility (rather than just pass the buck) and ensure that the state health system mechanisms of diagnosing and dispensing proper medication are there to save lives and not snuff them out.
*Shobha Shukla is the Managing Editor of Citizen News Service (CNS). She is currently providing on-site news coverage from 43rd Union World Conference on Lung Health, with kind support from the Lilly MDR TB Partnership and Global Alliance for TB Drug Development (TB Alliance). She is a J2J Fellow of National Press Foundation (NPF) USA. She received her editing training in 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 (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. [www.citizen-news.org](http://www.citizen-news.org)*
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