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Reaching out
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Prolonged medication and the expenses involved are the reasons why TB patients discontinue treatment. This is where REACH makes a difference.
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A DOTs provider and her patient.
EVEN as the HIV epidemic hogs the limelight, another silent killer is on the rampage. Anyone can fall victim and it kills more people in India than AIDS. The biggest irony is that, unlike AIDS, this one is fully curable. Yes, it is tuberculosis (TB).
In an attempt at damage control, the Government has launched the Revised National Tuberculosis Control Programme (RNTCP) to provide free treatment at all government hospitals. A unique feature of this programme is the Directly Observed Treatment Short course (DOTs) that ensures a cure by giving the drugs under direct supervision. The stumbling blocks have been little or no publicity, the expenses involved and the aversion that most people have about government hospitals. This is where the Resource group for Education and Advocacy of Community Health (REACH) makes a difference.
In 1998, REACH launched the Advocacy for Control of Tuberculosis (ACT) in Chennai to form a link between the government and the private health sector. The ACT has linked up with private hospitals , non-governmental organisations and corporate companies to identify patients. "We are trying to rope in as many hospitals as we can because that makes our reach wider," explains Jovitta Joseph, a social worker with ACT. The Tuberculosis Research Centre (TRC), Chennai, has been a guiding force in initiating concepts, planning programmes and giving technical support to REACH, the private practitioners and the labs. The ACT receives the drug boxes from the Chennai Corporation and releases them as the patients are identified and arranges to train lab technicians in sputum microscopy at TRC. They are also actively propagating the DOTs concept. T. is a 21-year-old girl who works in a leather factory. Her family members maintain that they do not worry about any stigma but they do not want anyone to know. This is a constant refrain. R. is 71 years old but is very worried that her neighbours will get to know that she had TB. She insists that her DP did not know what her problem was — something that R.K. in his late thirties also said. But, say the social workers, they would have known because it is written on the medicine box. The point here is — and this is a major step forward — that, sensitive to the patient's feelings, the DPs have not made an issue of the fact that they know they are dealing with TB.
Doctors agree that there is much social stigma attached to the disease. Dr. T.M. Perumal tells of an elderly patient being disowned by his children once they discovered he had TB. Dr. Venkatesan too admits that people are afraid especially if the patient is young, unmarried and a girl.
One factor that has made a big difference is the motivation provided by the social workers. Says Dr. Jemima Bhaskar of CSI Rainy hopital, "Many patients would have been regular defaulters but for the constant monitoring by the social workers." Manikandan of the T.T. Ranganathan Clinical Research Foundation, Trustpuram in Chennai, points out that his patients are mainly addicts and it helps them to know that someone is taking an interest in them." The social workers have a different take on the whole thing. "We've reached a stage where we cannot trust anyone anymore. Just as you think someone is regular and relax, they'll default. One has to literally drag them back to complete the treatment," says Jovitta. "The course is for six to eight months and many feel better after a couple of months. So they stop. Then they have another attack and this time the bacteria would be drug resistant," says Sheela Augustine, also with ACT.
Karpagam is the best example of this. She is a diabetic and her first bout of TB was a year ago. She stopped medication after a couple of months. This time round, her neighbour took charge of her healthcare. Bhavani is in her early twenties and works as a lab technician at a doctor's clinic. "I took her for the tests and, after she was diagnosed with TB, I became her DP. I get samples from the sales representatives at the clinics for her, give her insulin injections, ensure that she takes her medicines both for TB and diabetes. She just won't care for herself." Karpagam smiles vacantly at this outburst.
A morning spent at the Otteri hospital, Chennai, where ACT has a DOTS cell, confirms this need for supervision. Thrice a week, field workers from ACT hand out the medicine and ensure that it is taken before them. On the other days, they track down the defaulters. V.K. is in his fifties but looks at least 10 years older. An alcoholic and a chronic defaulter, he is still under treatment because he's been dragged back every time he tries to default. He was staring at his tablets when another patient was shown an x-ray of his lungs. That got V.K's attention. "Do you mean to say that my lungs are also like this?" he barks. "And what do you think we've been telling you for so long," comes the retort. After some bantering, out comes the real reason for his current regularity. He has to work to repay his loans and to do that he has to get well. "I've even stopped drinking," he says wistfully. "We'll keep our fingers crossed and hope that he completes the course this time," says Jovitta.
Sometimes side effects are the cause for withdrawing from the treatment. Most patients ask the doctor for an antidote but others just decide they've had enough. S, a cart-puller, is one. He is an alcoholic and feels breathless and bloated after taking the medicines. The ACT social worker, Vijayalakshmi, chased him up and down a busy market for 40 minutes before he agreed, though reluctantly, to complete the course. "He should not be pulling carts, but then he can't do anything else. His employers do not know he has TB and he drinks heavily," she says. "I don't drink much," he protests. "Only a teaspoonful." And he laughs.
Doctors point out that most of the new patients are young, between 18 and 25 years. The main causes for the growing incidence of TB are overcrowding, unhygienic conditions and smoking. Many youngsters are also HIV positive. Dr. C.P. Ramanna suggests that once is a patient is identified as sputum positive for TB; a HIV check should also be conducted.
The main reason for the failure of the government hospitals to implement the RNTCP is the attitude of the staff. Many patients go there initially but stop midway. "They don't give us the correct medicine, ask us to come time and again just to collect the medicine, they are rude ... " the list of complaints is endless. Seventy-year-old R. ran away from the Tambaram Sanatorium, Chennai, the first time he was ill. "Who'd stay there," he snorts in disgust. The experience left him distrustful of the treatment. Now the social worker and his family laugh as they recall the difficult time they underwent before he was cured.
The crux of the whole issue is that TB is fully curable. The treatment is available free of cost. But not many are aware of it. That is, perhaps, the biggest tragedy.
REACH can be contacted at 9/5, State Bank Street, II Floor, Mount Road, Chennai 600 002. Ph: 8418179, 8525074. E-mail: reach_us@vsnl.net
R. KRITHIKA
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