The highlight of the meeting was the sharing by the parents of 2 boys, Akshay and Pankaj aged 13years and 6years who were diagnosed with Extensively Drug resistant (XDR) TB about a year ago at LRS Institute, New Delhi. 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 60 USD. The family was told that since they were not residents of Delhi, they had to purchase the medicines themselves. This hospital catered to Delhi patients only.
The family had to go back to their native 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 hapless mother wondered tearfully if they would ever get suitable husbands for their two daughters, what with the stigma associated with the disease, the loss of their home and the ensuing forced extreme poverty.
TB treatment is free in India. That is what the government claims, and holds out its Revised National Tuberculosis Control Programme (RNTCP) as one to be emulated. Then why were these children refused free drugs? Is it because those suffering from MDR and XDR TB are not the state's responsibility because it costs at least 200 times more for treatment of MDR and XDR TB compared to a 6 months 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 questions regarding such incidents where patients were being sent away with prescriptions from many hospitals, agreed to look into the matter and as head of the RNTCP, took the blame upon himself for this serious mistake.
I think we have all failed these (and many other) children and are guilty. The National TB programme coordinators, the pediatricians, civil society members and activists-- none of us can turn a blind eye as children die of TB-- one every 5minutes-- whether it be due to poor/mis diagnosis, unavailability of cheap but quality treatment, and/or misconceptions prevalent in the society about the disease.
(The author is a senior TB activist and serves as a Vice Chair of the Stop TB Partnership)