Fusing journalism and TB – telling the stories as they are

Where does the buck stop?

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Blessina Kumar, TB Activist makes an impassioned plea on behalf of children suffering from TB. JATB is honoured to feature her.

Each year 14th of November is celebrated as Children’s Day in India and as part of this celebration a workshop was organized by GHA India, titled ‘Towards Eliminating Pediatric TB’. The gathering had interesting and informative presentations from Dr. Ashok Kumar DDG, Health Services who heads the RNTCP, Dr. Sachdeva from Central TB Division, Dr. Sangeeta Sharma, Pediatrician from LRS Institute, Dr. Amdekar, a private practitioner and former president of the Indian Academy of Pediatrics, and a Civil Society representative.

The highlight of the meeting was the sharing by the parents of 2 boys, Akshay and Pankaj aged 13 and 6 who were diagnosed with Extensively Drug resistant (XDR) TB about a year ago at LRS Institute by the pediatrician. The family hails from Punjab, a neighbouring state and when the children started getting sick, they ran from pillar to post before finally being referred to LRS Institute in Delhi. The pediatrician at LRS diagnosed them as having XDR, admitted them and asked them to purchase the medicines for treatment. The father is the only earning member in the family and works as a vegetable vendor. Their monthly income cannot be more than INR 3000 which is about 70 USD. The family was told that since they were not resident in this state they had to purchase the medicines themselves. This hospital catered to Delhi patients only.

The family had to go back to their place and with no other means to pay for the expensive medication mortgaged their home for 200,000 INR, about 4000 USD and bought the medicines for their children. This put them at risk of losing their home, made them poorer and made them victims of stigma due to the sons’ illness. The boys have been removed from school by the principal. The mother with tears in her eyes wondered if they will ever get anyone to marry their two daughters with stigma, loss of home and forced extreme poverty.

TB treatment is free in India. That is what the government claims and holds out its RNTCP programme as one to be emulated. Then why were these children refused free drugs? Is it because those suffering from MDR and XDR are not the state responsibility when it costs at least 200 times more for treatment of MDR and XDR compared to a 6 month treatment of drug sensitive TB?

Who is responsible for making the already poor family poorer? Who will take responsibility for the complete violation of the rights of these two children? Who is going to pay? The buck needs to stop somewhere.
Dr. Ashok Kumar in answer to the question regarding such incidents where patients were being sent away with prescriptions from many hospitals agreed to look into this and said that as head of the programme takes the blame for this serious mistake.

I think we have all failed the children and are guilty. The National programme, the pediatrician who asked the family to purchase the medicines knowing they could not afford to, the hospital, civil society and activists for not doing what needed to be done and for turning a blind eye as children die of TB, one every 5mins…….

Blessina Kumar
TB Activist, India
15th November 2011

Written by JournalistsAgainstTB

November 17, 2011 at 3:17 pm

Posted in TB and Media

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  1. […] Click here: Where does the Buck Stop? / Blessina Kumar […]

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