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By Sandhya Srinivasan Tuberculosis in developing countries is not just a disease requiring effective medical treatment. It is a disease complicated by complex socio-economic problems such as unemployment, poverty and malnourishment. The story of tuberculosis in India is the story of people with no right to food, employment, shelter or healthcare. No wonder the figures for TB haven't changed all that much in the last few years
Seventeen-year-old Nina (not her real name) was diagnosed as suffering from tuberculosis, but did not respond to the standard drug regimen prescribed by the medical officer at the Urban Health Centre in Navi Mumbai, a satellite township of Mumbai. "I sent her to a municipal hospital in Mumbai, for a culture test for multi-drug resistant TB," says the medical officer who saw her. "I was told that the doctors there asked her if she would be able to raise Rs 4,000 a month for the drugs. She didn't go back." On World TB Day this March we heard that India has an estimated 3.5 million sputum-positive TB patients, with 2.2 million new cases added every year, of which 1.1 million are sputum-positive. More than 500,000 Indians die each year from this treatable infection. More women in their childbearing years die of TB than of any other cause. The figures haven't changed all that much in the last few years. The story of tuberculosis is the story of people losing their jobs, of the poor descending further into poverty, of families being torn apart. In-patients at government TB hospitals come to be treated for complications from repeatedly defaulting on the drugs. Once there, they often find they cannot go back home. Poor TB patients are a burden to their families - unable to contribute to households struggling to survive in a hostile society. They accept their illness as part of life. Some go into debt to pay for healthcare. Others give up. Though India's original National Tuberculosis Control Programme (NTP) dates back to 1962, in the absence of a strong primary healthcare network and frequent drug shortages, less than 35 per cent of patients diagnosed with TB completed treatment. Started in India in 1993, the Revised National Tuberculosis Programme (RNTCP) based on Directly Observed Treatment Short course (DOTS), now covers approximately one-third of the population, and reportedly has a success rate of between 81 and 86 per cent. DOTS has certainly made it easier for patients who had to travel long distances to collect their fortnightly supply of medicines. DOTS has also certainly reduced the influence of irrational drug combinations by private doctors, and simplified treatment for a large number of TB patients. But how well can it work as liberalisation renders more people jobless in a society where people live in crowded slums without proper water supply or sewerage, where an ineffective public distribution system has further reduced food availability, where people have no right to food, employment, shelter or healthcare?
DOTS criteria
Under DOTS, once diagnosed, patients are registered with a 'DOTS provider' close to their home. This could be a government health service, a private doctor or even the local panwalla. For the first, 'intensive' phase of treatment, they consume the medicines in the presence of the DOTS provider who maintains an attendance register.
In order to qualify for DOTS, patients should be able to prove that they are permanent residents of the area, or at least that they will not leave for the period of treatment. However, a large proportion of TB cases are found among migrant workers who live in temporary housing and subsist on contract labour. Falling ill may cost them their job, and without a supportive environment, they may be pushed back to their villages. Such patients are a bad gamble for DOTS - which has a high target success rate - and because of this they cannot easily get treatment.
If they are persistent, migrant TB patients may be one of the few chosen to receive the old programme - but the hurdles to treatment in the old programme was one of the reasons why DOTS was conceived. It is the migrant population which is most in need of extra support to complete treatment. So they are more likely to remain untreated, or partially treated, encouraging MDR TB. Why people default
"Nearly 30 per cent of the population affected by tuberculosis consisted of men living without stabilised family environments, and with no stable income. This population is mobile, moving frequently from city to rural native place, moving within the city in search of jobs, leading to the interruption of the treatment." This is from an analysis of defaulters in a TB programme in NMMC, where 15 to 20 per cent of TB patients are in construction or quarry work. The most important reason for defaulting, according to the report reviewing this programme, was "economic conditions of the TB patients - unstable, irregular employment, lack of family support when (the) TB patient stops earning due to his illness." Multi-drug resistant tuberculosis
Over a period of seven years, Shashikala spent all her savings on TB treatment by various private doctors before she finally ended up, broke, in a government hospital where she was told she had MDR TB. She lost her job overnight. Having sold all her belongings of any value, she now raises the money for her monthly drug supply by applying to various charitable trusts with the help of the hospital social worker. She doesn't know where the next month's money will come from. Treatment for MDR TB can cost between Rs 1 lakh and Rs 1.5 lakh per person. The government's Revised National Tuberculosis Control Programme does not provide for treatment of MDR TB. An estimated 4 per cent of TB patients in India have MDR TB. Various government policies - the lack of regulation of private sector services, the cutback in health services depriving people of free care, the cutback in food subsidies, labour laws encouraging contract labour -- have contributed to the reasons why people develop MDR TB. However, people have no right to expect treatment for this virulent form of TB. The government argues that it cannot afford cures for MDR TB because the drugs cost too much. If AIDS drugs costs could be brought down sharply, why should the same not be done for MDR TB drugs? Poverty
Dr Mohan Rao of the Centre for Social Medicine and Community Health at Delhi's Jawaharlal Nehru University notes that the death rate from TB in England and Wales started falling much before the identification of the tuberculosis bacillus, let alone the development of effective chemotherapy, and suggests this is due to increasing employment and food availability. According to government officials, the 'problem' TB patients are the 30 per cent below the poverty line. DOTS dosages are meant for the better-nourished. The malnourished are more vulnerable to TB, less able to tolerate the drugs, less able to work. Joblessness
The current recessionary trends in the economy are stumbling blocks in an already difficult road. Migrant workers 55-year-old Senapati Naik and his brother-in-law convinced the health authorities that they would not shift from the area, and were added to the DOTS register. And then all construction activity at the site in Mumbai halted and the two men survive on whatever daily work they can find. "Where do we go? We can't even go back to Orissa. What would we eat there?"
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