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Eradicating tuberculosis: The unfinished agenda

By Sandhya Srinivasan

TB is a disease of poverty. But the poor and unemployed, the ones most in need of treatment, are more likely to default on treatment. 'Defaulting' on treatment can lead to multi-drug resistant TB, which the National TB Control Programme cannot, or will not, afford. This is an account of the human side of tuberculosis in India, which has the highest number of TB cases in the world and a third of the global burden

She is 38 years old but looks a decade older. She props herself up on the bed with some difficulty, dismissing the suggestion that she is too weak to speak. "Can you help me?" she asks, her desperation almost palpable. No one in the hospital ward has the time to listen to her story.

Shashikala entered the job market as a newly orphaned child when she joined her grandmother washing utensils in middle-class households to keep her siblings fed, clothed and in school. She got married in 1981. Two years later her husband's company closed down. "Even when he was employed he never gave me money for the house. After he lost his job, he just stayed home drinking," she says. So she washed utensils and clothes in other people's houses till one of her employers offered her a job in a factory he was setting up in New Bombay (now Navi Mumbai), a satellite town across the Bombay harbour. She started at the Atash Foods factory in 1985, earning Rs 900 (USD 20) a month, but was eventually promoted to supervisor of the entire unit, with a monthly pay packet of Rs 3,750.

In 1994, Shashikala received a severe electric shock while handling the factory machinery. "My employer paid for my treatment but I was not to tell the doctor that this happened at work," she said. She came back to work a month later. Shortly after the accident she started coming down with fever and chills every afternoon. "But I had to keep working," she says. Eventually she went to the neighbourhood doctor who advised her to get admitted to a hospital. After undergoing X-ray, blood and sputum tests, she was diagnosed as having tuberculosis. While there is no connection between the accident and her later diagnosis of TB, they are connected in her mind, presumably because of her employer's reaction in the two instances.

In the seven years since then, Shashikala has been in and out of various private hospitals, and has undergone two rounds of treatment for TB. Her employer spent some money for treatment, but deducted this from her salary. Over these seven years, she has spent thousands of rupees on various tests and on TB drugs which are supposed to be provided free of charge by the government. After she started coughing up blood, she was told at one private hospital that she needed surgery costing at least Rs 20,000. Obviously she could not afford this. In 1999, she went to a municipal hospital where she underwent tests and was told she had multi-drug resistant tuberculosis (MDR-TB). The drugs cost Rs 4,000 a month and the government's TB programme - which Shashikala had been unable to access all these years -- does not pay for MDR-TB treatment.

MDR-TB occurs when a person defaults on the treatment a number of times and the bacteria mutate to become resistant to one, two or all the medicines in the treatment pack. This is the most virulent form of TB and almost impossible to treat because of the expense. It is a 100 times more expensive to treat and treatment is not covered under most government health systems. An MDR-TB patient also spreads this deadly variant and not the ordinary TB, which make this strain the worst news to hit the TB world. Experts are saying that Asia is the new MDR-TB hot spot. In India 4% of all TB cases have the MDR variant, while in New Delhi the prevalence rate is a high 13%.

Shortly after she was diagnosed, Shashikala's employer told her daughter to come and pick up her mother's final settlement dues. "I protested. I needed extra money for treatment but I could not afford to lose my job," she said. In April 1999, Shashikala accepted - under protest -- a cheque for Rs 25,000 "in full and final payment of dues". When she deposited the cheque, it was returned with the stamp: "Stop Payment".

Finally in January 2001 Shashikala was directed to the government TB hospital at Sewri, Mumbai, where she is today. Since then, she has raised the monthly Rs 4,000 needed by a variety of means. A charitable trust helped out for a couple of months. She sold her TV, then her jewellery. A social worker at the Sewri Hospital is also trying for funds. Every month is a new challenge. Her children do home-based work for another food-processing unit. She pulls out photographs of her twin teenaged daughters and two younger boys. "They're earning some money somehow, and even going to school," she says, her pride mixed with desperation for the future. She clings on to their prospects. If she ever gets out of the hospital, they're all the future she has.

The TB Hospital at Sewri

Both Shashikala and the TB hospital represent the human side of tuberculosis in India. The majority of the 800-odd in-patients at this 1,000-bedded institution in central Mumbai are 'repeat defaulters'; people with TB who more than once have been unable to complete the standard course of drugs. Many of the complications they suffer are a consequence of this failure. A few of them develop the multi-drug resistant form of this disease. Many just slowly wither away. Unfortunately, the Sewri hospital's image is of a place where TB patients go to die. "Patients are dumped here by their relatives," says Sister Vadgaokar, matron in charge of the hospital. Poor TB patients are a burden to their families - often infectious, unable to contribute to a household already struggling to keep head above water in a city which has no place for losers.

And Shashikala -- a non-unionised worker in a small-scale industry, working long hours with no formal health benefits, fired at will, cheated out of her dues and with little hope for justice -- represents the Indian worker, for whom serious illness without proper treatment is a part of life. As is going into debt to pay for health care.

These are the stories TB patients have to tell.

There is 28-year-old Deepak who went from one private doctor to the other before ending up in Sewri. He is to be discharged today, but TB lost him his job at a ballpoint pen factory. He stares at the hospital's prescription for protein supplements and vitamins and wonders where he will get the money to pay for these expensive items. There is the skeletal figure of the municipal sweeper huddled on a bed, coughing blood.

"He hasn't eaten in two days," says his wife. "We have seven girls, none married, and he is in debt. We get hardly any money from his salary."

There is Waman Awade, who used to work as a stonebreaker at the Turbhe quarry, but had to stop when he fell ill. "One doctor took Rs 2,000 for saline and drugs," says his daughter-in-law. "They wanted to admit him in the hospital but we couldn't afford it." Finally he was referred to the Employees' State Insurance Scheme (ESIS) hospital, and from there directed to the urban health post where his treatment began. But the drugs irritate his stomach and he doesn't seem to see the health system as sympathetic to his needs. "He started throwing up the medicines, and stopped taking them. Now he treats himself with drugs bought from the drug store whenever he feels particularly sick. He has given up on the government."

The National TB Control Programme

With an estimated 3.5 million sputum positive TB patients, India has the highest number of TB cases of all countries in the world and accounts for two-thirds of TB cases in South East Asia, and one-third of the global burden of TB. About 2.2 million (1.1 million sputum positive) are new cases every year. Eighty per cent of TB patients are in the economically most productive years of their lives. About half a million Indians die of TB every year - more women in their childbearing years die of TB than of any other cause.

TB was recognised as a serious public health problem in the 1946 Bhore Committee report. In the absence of effective drugs, the only treatment was 'good food, open air and a dry climate' - hence the sanatoria for patients to regain their strength and immunity. The development of effective drugs in the 1950s enabled domiciliary treatment, with the use of a standard drug regimen for 12 to18 months. The discovery of Rifampicin and Pyrazinamide made it possible to shorten the duration of treatment to six to nine months.

India's original National Tuberculosis Control Programme (NTP) dates back to 1962, and public health experts emphasise that the NTCP is one of the few based on quality epidemiological research. However, the absence of a strong primary health care network, and frequent drug shortages, rendered the programme ineffective. "When people went to the health centre with coughs they were sent back with cough syrups!" says Debabar Banerji, veteran analyst of the TB programme.

Just 30 to 35% of the patients diagnosed with TB completed treatment - as measured by collection of drugs for the prescribed duration. Just 27% of TB cases in the NTCP were diagnosed on the basis of positive sputum smears. As many as 67% were smear-negative and diagnosed on the basis of X-rays and clinical signs.

A 1992 review of the NTCP concluded that it suffered from managerial weakness, inadequate funding, over-reliance on X-ray, non-standard treatment regimens, low treatment completion rates and lack of systematic information on treatment outcomes.

The Revised National Tuberculosis Programme (RNTCP) was piloted-tested in India in 1993. Directly Observed Treatment Short course (DOTS), the basis of the RNTCP, is seen as the wonder programme to tackle the TB epidemic. Both patients and health workers acknowledge that DOTS makes TB treatment easier for some people. The question: will this work? Will it resolve the massive problems behind the TB epidemic?

Approximately 30% of India (32% of Maharashtra) was covered by DOTS at the end of 2000. As of early-2001, more than one-third of the population (340 million) were covered by DOTS. The success rate under DOTS - measured by sero-conversion of newly detected sputum positive cases - was reported as 86% for Maharashtra for the first three quarters of 2000, up from 81% in 1999. The overall cure/completion rate under the RNTCP is 81%. The global target is 85% treatment success, as measured by documented cured (smear negative) or successfully completed treatment.

Other indicators for DOTS, which focuses on treating newly diagnosed smear-positive patients, include improving the detection rate of new sputum positive patients (estimated to be 55% of actual cases, in 2000, against a target of at least 70%), and a low ratio of sputum negative to sputum positive patients.

Estimates of TB-related deaths still range from 437,000 to 500,000 a year, a figure which goes back to the 1946 Bhore Committee report.

Systemic flaws

When Srinath Naik goes to the nearest urban health post to take his drugs, he is told he has come too late to receive the Streptomycin injection - the syringes have all gone for autoclaving. "Either bring a disposable syringe or come back tomorrow," snaps the health worker. "He's always late," she explains to her colleague. Such attitudes can't do much to encourage patients to come for their medicine. Srinath doesn't dare tell her that he's spending the day looking for work to keep his family alive.

Despite the best efforts, even the DOTS programme suffers from drug shortages. "Sometimes we don't receive drugs for 15 days, or we get drugs for which the expiry date is next week," says the medical officer. "Even though there is supposed to be a prepared package of the entire course of drugs for each patient, it doesn't always work that way," says Gita Balasubramanian, Project Coordinator of Alert's TB programme in Navi Mumbai (the Navi Mumbai Municipal Corporation and voluntary organisation ALERT India have been working together to establish a functional TB treatment service, and to implement the DOTS programme. It has not been easy). "For example, there are paediatric patients for whom the packages have not been made up."

In one corner of the male medical ward at Vashi's newly-opened First Referral Unit lies Senapati Naik, with a hopeless expression on his face. "The medicines are burning my insides," he whispers. "I feel so weak I can't walk." Senapati, who is sputum positive, is lying in an open ward with at least 25 other men. "We don't have so many basic things, separating such patients is impossible in a municipal hospital," says Dr Shafaq, resident doctor.

Multi-Drug Resistant TB

Also, the system does not pay for MDR-TB treatment. The system has no place for patients like Shashikala, who have lost their jobs, who have suffered years of illness, and who must now find Rs 4,000 a month to pay for a treatment which has less than a 20 per cent chance of success.

Treatment for MDR-TB costs between Rs 100,000 and Rs 150,000, for which reason it has been kept out of the DOTS programme all over the world. However, there are human rights issues involved in this refusal of treatment. Government policies directly (through cutbacks in health services depriving people of free care, and reluctance to regulate private health services) and indirectly (through cutbacks in food subsidies, encouraging casual labour, etc) have a bearing on whether people develop MDR-TB. Voluntary organisations working with government programmes are encouraged to take on this responsibility. As a result, the occasional MDR-TB patient will be given treatment. But they have no right to expect it.

"I don't see this as a human rights issue," said a medical officer. "People are at least partly responsible for their treatment. No matter who diagnosed their condition, they will have been told they must complete treatment. They are not children. Defaulters default and sincere patients take their treatment." However, the medical officer continued, "Treatment for MDR-TB should be available on the programme. It is needed for very few people. And drug costs are, after all, determined by companies."

Indeed, if the costs for prohibitively expensive drugs for HIV/AIDS could be brought down sharply, why cannot the same be done for MDR-TB drugs? "The general public does not have a voice," said the medical officer. "So many services are being taken away, and no one complains."

TB and HIV/AIDS

Thirty-two-year-old Ram Asre Yadav is from Sultanpur, UP. He was first diagnosed as suffering from TB at the Shivaji Municipal hospital at Kalwa, but they didn't have all the drugs he needed, and he could not afford to buy them in the market. Again, he went to a series of doctors and hospitals, both private and public, till he finally ended up at the Vashi FRU. In the course of one of these visits, he was tested for HIV and the positive results entered in his records.

"There's no such thing as pre-counselling. One of these doctors just did the test and even made him pay for it," says Gita who talked to the couple when she noticed the information in his medical file. Ram Yadav earns some money delivering milk in the area. His wife runs a small shop from the house, and they somehow manage. Ram Yadav cannot even dream of anti-retroviral drugs; he's lucky if he gets drugs for opportunistic infections. His wife is anxious about their children, how will they manage? The school has just hiked tuition fees from Rs 25 to Rs 50 a month. "We don't want charity, just that they should give us a discount. We want to keep our children in school but can't afford the raised rates," she said. He is profoundly depressed, whether at the prospect of his own future, or that of his family.

TB and poverty

TB very often means joblessness, because the patient often just cannot work. Sometimes this forces them back to their villages where at least they die in their own villages. Even otherwise, the malnourished are more vulnerable to TB, less able to tolerate the drugs.

"If the patient is starving, he can't work," says Gita. "The drugs have their side-effects that can be very unpleasant. If we don't recognise such problems, the patient will drop out, either to support the family or to go home to a more supportive environment. Right now we give ad hoc support, we pay for someone's rickshaw, or we buy them food. I don't know how we could give more systematic support."

The programme constantly comes up with situations it cannot handle, but unless these are resolved, people won't get cured. Employers often fire TB patients when their illness becomes known. This forces them to survive on odd jobs. Like the young man who is discharged from the Sewri hospital but has no work to go back to.

The current recessionary trends in the economy are stumbling blocks in an already difficult road. Alert India says it had to fight the cause of 55-year-old Senapati Naik and his brother-in-law Srinath to get them added to the DOTS register. With no regular jobs following a virtual standstill in the construction industry, the two men feed their families with whatever daily work they can manage to find. "What do we do?" asks Srinath. "Where do we go? We can't even go back to Orissa. What would we eat there?"

Two weeks after starting treatment, Senapathi is complaining of body pain, and says he has no appetite. A fortnight later he was hospitalised. "My hands and feet are burning, I can't stand up on my own. How will I earn money to support my family?" he wonders. "It was simple malnourishment," said Gita. "He was starving, and it was made worse by the drugs."

Meanwhile, in addition to the physical discomfort, Senapati worries about work. "When I can't even stand up without a stick, how can I feed the mouths of my family? My mukadam won't give me work."

His real fear is not the disease but poverty.

(Excerpted from Stoppping a Killer: Combatting Tuberculosis in South and South East Asia, Editors Afsan Chowdhury, Esther Griffiths, Bhim Subba, World Health Organization and Panos Institute, South Asia, Kathmandu, Nepal, 2002.)

InfoChange News & Features, March 2003