What Killed Vedavalli - TB Or Sheer Negligence Of Doctors?

(This story is based upon inputs given by Vedavalli’s daughter Radha to CNS via email)
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 laments, “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 - CNS
(The author 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. Email: shobha@citizen-news.org, website: http://www.citizen-news.org) 

2 comments:

  1. Radha's story and the untimely and unnecessary loss of her mother is one more death added to the list of the thousands of people around the world, but more so in the developing world, who have lost a loved one to TB and have asked the same question: did my mother, father, husband, wife, child, brother, or sister died of a disease that is supposed to be treatable and curable or did she/he died because of negligence and lack of care from the very people that have taken an oath to provide them with preventive and curative care?

    Not to be critical and blame the professionals who we trust to take care of us and cure us when we are sick but we need to continue to ask and demand answers; why do people continue to die from a disease that is curable; when drugs to treat these people are available and are free of charge; when significant amount of money have gone to train these professionals in the technical as well as the social aspect of the disease which is supposed to install in them empathy for their clients improve provider-client interaction and improve quality of services for TB care. Over the years we have heard of many reasons as to why the negligence and the lack of care in the part of these professionals, especially the health staff at the lower levels of the health system; they are overworked; they get very little pay; self-esteem is low; motivation is absent; and often skills are inadequate to allow for proper care. We all sympathize with their plight but is this justification for negligence that leads to poor quality of services and to ultimate death? And what about those at the higher level of the health system though? What role do they play in this? Are we to hold them accountable for the negligence and the deaths of our loved ones but also for the plight of the lower level health staff? And what comfort knowing the plight of the health staff brings to Radha and to all other families who have lost a family member to TB? How much is the life of the main and only earner in the family is worth and how do we compensate for the unnecessary loss of life? And if the ones who have taken the oath to care for us when we are sick cannot deliver on their responsibility what do we do? Do we continue to depend on them or do we look for alternatives? Do we seek to take a holistic approach and demand health by the people and not only for the people?
    TO BE CONT...

    Zacharoula (Hara) Srimuangboon CHE, MPH
    Public Health and Tuberculosis
    Consultant
    Chonburi, Thailand
    E-mail: hara4communitydevelopment@gmail.com
    Skype: Mihalea Z Hara
    Mobile: +66 (81) 9499180

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  2. CONTINUED FROM PREVIOUS COMMENT...

    If the answer is yes then this is where the social aspect for TB disease, seeing the human faces and feeling the human suffering behind it, and acknowledging that community participation and intersectoral collaboration are now even more crucial. MDR-TB is taking over the "regular" TB and if we don't begin to provide quality basic DOTS services the list of people lost to TB will continue to get longer and many more families will grieve the unnecessary loss of a loved one and plunge deeper into poverty; remember TB is the disease of the poor. We need to continue to advocate for resources, communicate to increase awareness and change behaviour and attitudes among providers and communities and we need to mobilize communities to take action. We need to give people and communities the knowledge and the tools to enable them to identify their own challenges in TB and develop plans to address these challenges. Moreover National Tuberculosis Programs must realise that they cannot do everything and they can't reach every corner and every community; they need to recognise the contribution of the NGOs and CSOs as a resource that can contribute to their goals and objectives not a liability; and they need to embrace them; and forge collaborative partnerships.

    WHAT WE ALL NEED TO DO.....
    we need to take ACTION, maybe starting from this year we can open the Conference by announcing the names of the people who have died this year from TB, maybe only then we all realise the implications of our actions.

    Zacharoula (Hara) Srimuangboon CHE, MPH
    Public Health and Tuberculosis
    Consultant
    Chonburi, Thailand
    E-mail: hara4communitydevelopment@gmail.com
    Skype: Mihalea Z Hara
    Mobile: +66 (81) 9499180

    ReplyDelete