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Tuberculosis Control Program
By Rajasthan Vanvasi Kalyan Parishad
UDAIPUR, RAJASTAN, INDIA
The Need:
TB is a major killer disease in that region and nearly 4 % of the population is affected by radiologically active TB of the lungs. TB needs a long term treatment (8 to 12 months) with expensive medication and nutrition. Most of the poor tribal people cannot afford such high expenses (cost of medicine for each patient is about Rs. 2500). One-third of all active TB cases are sputum positive and contagious. If left untreated, one such patient can infect 10 to 15 other people coming in his or her contact. There is high probability that other family and community members would also catch it. TB has destroyed many families and their economy in the region.
A Modest Beginning
April 13 1992 was an eventful day for the Makadadev village of Jhadol Tehsil in Rajasthan. Braving the Scorching heat and traveling long distances nearly 400 tribal people assembled in the village ground. This was in response to a call from Rajasthan Vanvasi Kalyan Parishad to fight the menace of tuberculosis (TB). A medical team arrived from Udaipur to set up a TB detection camp. TB still being a social stigma, in the large crowd there were mostly curious spectators and supporters than the actual patients.
The medical team examined the suspected cases and based on preliminary investigations called some of them For further check up at the TB clinic in Udaipur. Sputum smear test anti X-ray confirmed the initial diagnosis of contagious TB in the cases of 18 patients. These patients were enrolled for 9-10 months long multidrug treatment for which the Parishad had already drawn a detailed plan. Among the patients enrolled was Ganeshi. Her family being convinced that she will not live through that summer had started collecting firewood from the forest for, her cremation.
This was a modest beginning of the TB Control Program of the Parishad in Jhadol and Kolra tehsils of Udaipur district (see the map). In these two tehsils 80 to 90 percent of the total population is tribal mostly Bhils Meenas and Garasias. For centuries they were the owners of the land and forests, which provided them enough to live well in a blissful isolation from the rest of the world. In last 3-4 decades, massive deforestation has occurred in the name of urban and industrial development. As a result, these tribal people lost their main source of livelihood. Not knowing any other way to live, their socioeconomic condition has deteriorated in last few decades. Ignorance and helplessness have rendered alcoholism, malnutrition, disease as part of their daily existence.
Jhadol and Kotra now come under the most backward regions of Rajasthan. The area has drought like conditions every third-fourth year. IN this hilly terrain water is a scarce commodity and only 14% of the land is cultivable. The literacy rate was only 8.66 % (among women 2.1 %) in comparison to 38.5 % in whole Rajasthan according to 1991 Census. The area has rich deposits of limestone, granite and marble which are yet to be fully exploited.
TB is a major killer disease in that region and nearly 4 % of the population is affected by radiologically active TB of the lungs. TB needs a long term treatment (8 to 12 months) with expensive medication and nutrition. Most of the poor tribal people cannot afford such high expenses (cost of medicine for each patient is about Rs. 2500). One-third of all active TB cases are sputum positive and contagious. If left untreated, one such patient can infect 10 to 15 other people coming in his or her contact. There is high probability that other family and community members would also catch it. TB has destroyed many families and their economy in the region.
As a part of their National TB Control Program, the Government of India has established District TB Centres (DTC) to detect and treat TB. Their efforts, However, have not succeeded in controlling the menace. Government reports candidly admit this fact The rigid bureaucratic set up of the government programmes could rarely sustain the long drawn treatment regimen. Often the supply of the medicine would not arrive, or no periodic medical check up would follow. Such programmes have failed to inspire hope and confidence among the patients and the prevailing ethos was that of helplessness and resignation. They become the easy prey for private practitioners who provide symptomatic treatment at high cost. The whole scenario was discouraging for any voluntary agency to step in.
It was in this backdrop that the Rajasthan Vanvasi Kalyan Parishad accepted the challenge of mobilizing masses for controlling TB. The Parishad was active in the region for two decades and already had several other projects . It was familiar with the area and its problems, and had the necessary infrastructure. The field workers, mainly from the local villages had already build up a mass base and were prepared to take up the responsibility of TB control.
The TB Control Program
In most of the cases TB patients are treated in their own homes. The standard treatment of TB, known as a short-term chemotherapy, is a combination of four different medicines. Usually these medicines are tablets or capsules of isoniazid, rifampicin, pyrazinamide and ethambutol. The patients are required to take these drugs every day. Severely sick patients are also given the daily injections of streptomycin for the first two months. After two months of treatment, if the TB bacilli are not found in the sputum then the patients are given fewer medicines uptil they are completely cured. Medical examination of the lung condition is done every third month.
If the patients regularly lake all the prescribed medicines along with nutritional food, the rate of cure is 95 %. Once recovered, patients' general health condition is under observation for another six months for any residual effect. During, the whole treatment period the patient is required to completely give up smoking alcohol or any other kind of addiction.
The most important aspect of the treatment is the regularity of taking all tire medicines As it happens quite frequently once the coughing ends and the patients have symptomatic relief they stop taking medicines 'This could be fatal for the patients. 'The surviving strains of' the 'TB bacilli arc those that are stronger and more dangerous. They quickly multiply and become resistant to the same medicines The patients thus develop a chronic and resistant form of TB which is difficult to cure in future.
'The Parishad workers knew about these intricacies In their eagerness to ensure proper medication initially the patients were asked to come daily at the centre to medicine and nutritional diet (Posha Ahar). 'The Parishad volunteers supervised the patients taking the first medicine, then gave them nutritional diet. After half an hour the other medicines were given. These medicines were purchased by the Parishad through its own resources. The patients also got the Posha Ahar prepared at Parishad's own centre.
Soon it was realized that this arrangement will not work. Patients and their family members had to travel long distances anti for various reasons could not make it every time. A weekly distribution centre was then set up in village Makadadev itself. The patients were given weekly quota of medicine and Posha Ahar along with the detailed instructions about medication, and dietary and other precautions.
To ensure that the patients followed the treatment regimen properly, field workers of the Parishad visited their homes periodically During such visits they would also educate the patients and their families about health hygiene, suggesting ways to keep utensils, clothes and bed of the patient
separate. The field staff would also ensure that the patients were not consuming tobacco and alcohol.
The hallmark of the TB control programme was the regularity with which the weekly distribution of medicine anti nutrition was maintained Regular drug supply was not only essential for the proper treatment but also for building patient’s confidence in the programme. At times the Government supply would not arrive or the medicines may not be available in the local market. These were no deterrents to Shri Purohitji Shri Shantilalji anti Mrs. Pushpaji who volunteered to run the distribution centre. Contribution of TB clinic staff anti Dr. Asawa was immense in this TB control programme. On the week-day the
Patients assembled at the distribution centres were assured of their weekly supply of medicine. This distribution system was so religiously regulated by the in-charge that even death in his family on the previous night did not interrupt the schedule. Taking time off from lids social obligations he was present at the centre the next morning to distribute the medicines.
These efforts borne fruits. Ganeshi's family was jubilant to see him recovering To celebrate his new life, they made a bonfire of the firewood which they had collected for his cremation. All 18 patients showed remarkable recovery and were well on the course of complete recovery. This was the first time that a TB control programme in that region had 100 % success.
Expansion of the programme
The success of this initial experiment brought dramatic change in the thinking of the tribal people. TB for decades remained synonymous to death. There were rare instances in the past of any TB patient recovering anti living a normal life. A very noticeable recovery of those 18 patients gave new hope to others in the region. The patients started approaching on their own for the diagnosis and treatment. It became much easier to ensure compliance to the treatment regimen for these motivated patients.
The TB control programme got a real boost when an industrialist from Bombay Sri Khemchandji Kothari of offered to meet the cost of the medicine for three years. He also donated a vehicle to the program which made it easier to transport medicine and worker in the interior areas. Another industrialist Rajmalji Jain provided funds for other expenses. The infrastructural and volunteer support came from the Parishad.
In 1995, Government of Rajasthan provided financial assistance that helped in expanding the program in other villages. At present there are 17 distribution centers in Jhadol anti Kotra covering 256 villages. An ambulance was also procured to strengthen tile medicine distribution and early detection of TB. The program that was started in a modest way five years ago has at present 601 TB patients on its roll. The goal of freeing the area from TB now does not seem too far-fetched.
Major Achievements
In last five years in all 6464 patients were suspected to have TB on the basis of preliminary check up. These patients were sent to the TB Clinic, Udaipur for further tests. Out of these, 1872 patients were confirmed cases of TB, 87 % of them had TB of chest. All TB patients were enrolled in the program for
short - term chemotherapy
The Parishad also helped the other patients in their treatment and provided them medicines. The success of the TB Control Program can be judged from the fact that from Jhadol and Kotra by 1997, of the 1872 patients enrolled for the treatment, by 1188 were cured 601 are under treatment. The build up of the patient enrollment in the last 5 years is shown in figure2.
The recovery rate in this program was 88% of the total enrolled patients. Other 7.5 % of the patients dropped out of the treatment while 4.5% died while getting treatment. One major reason for the drop out was their going away to other places for work. Of' the total number of patients enrolled, 38 % were female patients. The yearwise pattern of' the recovery rule is shown in Figure-3.
Out of all 1872 enrolled TB patients, 609 were found sputum positive. Figure 4 shows the recovery of these patients which was more than 89 %. All present 158 sputum positive patients are under treatment Fortunately there were only 10 cases of drug resistant (TB).
A total number of 87 patients who were completely cured through the efforts of the Parishad were given financial assistance of Rs.2.000 each by the State Government for their rehabilitation. The purpose was to fully rehabilitate the cured patients in the community. Other important achievements of the program are hard to account in terms of statistics. The effective cure of TB improved the quality of life of the patients and their families in many ways. They could resume their daily work, increasing families income. The TB control program also proved to be an effective mechanism to curb rampant alcoholism in the tribal areas. Most of the patients resolved during the long treatment not to indulge in smoking and alcohol abuse in the future. A close contact with the workers who frequently visited their homes ensured that the tribals become aware of the dangerous consequences of taking alcohol. A change in the quality of life of the patients was noticeable even during the treatment. They were better dressed, better fed; their houses were cleaner.
So strong was the resolve that in their follow up visits field workers rarely came across the cases in which cured patients and their families resumed drinking. These cured patients in fact, became partners in the implementation of the TB control program. They would help in identifying new patients, in motivating them to seek treatment and in educating them about the preventive measures.
Three factors may be responsible for high success rate of this program. (i) is field workers attitude of caring for the overall well-being of the patients and their families. During their frequent home visits these workers were consulted for other personal problems also and they were always willing to do what ever was possible. This close bond of the tribal people with the field workers was for everyone to notice. (ii) though the program was initiated by the Parishad, eventually it became the program of everyone in the region. This community ownership of the program resulted in much needed local cooperation. (iii) the TB control program got integrated with other welfare activities of the Parishad, sports, literacy, vocational training, etc.
Future Plans and Possibilities
The very success of the program has resulted in increasingly large number of patients approaching the Parishad for the treatment. With its limited resources it is becoming difficult for the Parishad to cope with the number. More resources are required to be taped to run the program effectively. The Parishad plans to expand the program in adjoining Kherwara, Girva and Gogunda tehsils also. The present target is to about 1000 patients year.
Looking at the kind of health services the Parishad aspires to provide, it is now necessary to establish a health center on its own premises. The urgent need is to hire doctors and other support staff to provide diagnostic and treatment facilities locally. A mobile unit can at times render services at the doorsteps to those patients who cannot travel. The mobile unit can also be used for BCG vaccination. If BCG vaccine is given to healthy infants, in 80% of the cases it protects them against TB uptill the age of 15 years.
It is essential to take other preventive measure to eradicate TB from the region. There is a need to start a massive awareness campaign to educate people of the symptoms and early detection of TB, as well as about the hygiene.
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