Outside their one-room shack in a slum of a small town in Northern Karnataka, Ahmed (70) and his wife are bent over a small mound of grains. It is a mix of rice, wheat, stones, dirt and rat droppings which they have obtained free from the sweepings at a nearby public distribution system (PDS) outlet. They are sorting the sweepings to make them edible for the evening meal. While Ahmed doesn’t know how much he weighs, his clothes which hang loosely on his frame tell a story.
Ahmed is taking DOTS (Directly Observed Treatment, Short-course) medication for tuberculosis (TB). After dropping out of the first level of treatment, he is now on the second, more intensive level, which lasts for nine months. The treatment is associated with severe side effects that include nausea, loss of appetite, and body pain which he finds difficult to withstand.
He often skips doses of his medication and only persuasion from his wife and a well-meaning neighbour helps him to be regular. “Doctors tell me if I eat well, the side-effects will be reduced and that if I gain weight, I will feel better. But I don’t even have a job. We are lucky if we get two meals a day.”
He worked as an agriculture labourer in his younger days but is unable to work now and his wife works as a domestic help earning about Rs 2000 per month. There is a strong likelihood of Ahmed dropping out of treatment again and becoming vulnerable to multi drug-resistant TB (MDR TB), which will take two years of treatment, is far more toxic and has greater chances of failing. He will also then spread MDR TB. Ahmed’s case is a study in the complexities associated with TB control in India, which carries the highest TB burden in the world.
In India today, two deaths occur every three minutes from TB (TBC India). One fourth of the global incidence annually of TB cases occur in India. In 2012, out of the estimated global annual incidence of 8.6 million TB cases, 2.3 million were estimated to have occurred in India (TB India 2014, Annual Status Report). India is estimated to have the highest number of MDR-TB.
According to WHO, the estimated number among all TB cases notified in India in 2011 was 66,000. The number of notified cases enrolled in MDR-TB treatment in the same year was 4,237 (6.4 per cent).
Inefficient control of TB
Data points to inadequate or inefficient control of TB. The blame for the mismanagement of TB has often been laid at the doorstep of the private healthcare sector, which is accused of over-diagnosing, misdiagnosing or underdiagnosing patients and of not following recommended regimens of treatment.
While this might hold more than a grain of truth, the failure to recognise that TB is not just about the bacteria is far more serious. Inefficient TB controlling goes far beyond the generalised reasons put out with monotonous regularity. Ahmed’s case is a stark pointer to the lack of patient-centric care and its unaddressed, insidious and vicious impact.
M, a TB Health Visitor attached to RNTCP says with anguish, “I do my best to follow-up with patients assigned to me. When a patient tells me s/he could not go to the DOTS Centre for fear of losing wages, or that s/he cannot or will not take medication because the side effects are too severe to bear, there is not much I can do. I have no solutions and don’t like to be held responsible for a patient’s default.”
The findings of a study entitled “Nutritional status of adult patients with pulmonary TB in rural central India and its association with mortality” conducted at Jan Swasthya Sahyog (JSS), a voluntary organisation, point out that under-nutrition is a known risk factor for TB and can adversely affect treatment outcomes.
There are other, acknowledged but unaddressed linkages that impede TB control in India. Out of a long list of gaps, inadequate knowledge of patient-centric problems and lack of robust follow-ups of patients – whether in the private or public healthcare sector – are just some glaring ones.
HIV also began as a medical problem, but the sector was quick to take it beyond the virus and address the linkages leading to patient-centric care. How long before TB gets the same patient-centric status? How long before TB goes beyond the bacteria to looks at ground realities and keep the patient at the centre? How long before people like Ahmed get solutions that are relevant for them?