The Nobel Laureate Rabindranath Tagore wrote in his collection of song offerings to the almighty, Geetanjali “As we go into the depths of truth we realize the magnitude of injustice in this world“. A fine example of this injustice is the disease Tuberculosis, which though a fully treatable disease has attained the status of an epidemic in India and other developing countries.
Tuberculosis is an airborne infectious disease caused by the bacteria Mycobacterium tuberculosis. Droplets and droplet nuclei containing bacteria spread into the air when a person with active TB disease of the lungs breathes, coughs, sneezes, speaks or sings. Every person with TB bacteria in the lungs (sputum-positive case) has the potential to infect others. Tuberculosis can also affect other body parts such as pelvic organs, intestines, meninges and lymph nodes.
Mycobacterium tuberculosis can survive within the human body for many years. Incubation period of the disease therefore varies from few weeks to several years. The disease occurs when the body’s resistance is sufficiently lowered. Malnutrition is one of the major causes leading to low body resistance. Unsanitary, overcrowded conditions, lack of education, poor quality of life, population explosion, global travel, all these also predispose to infection. Infection with HIV/AIDS is another reason for TB infection setting in.
Symptoms of TB include chronic cough, presence of blood in sputum, unexplained fever and unexpected weight-loss. If any of the above mentioned are seen then the patient should undertake the sputum test. The sputum smear is a cost effective and simple test. It can be easily done free of cost in all Government Designated Microscopy centres. A sputum positive patient is one who is coughing up the bacteria in his sputum. This is responsible for the rapid spread of the disease in the community. An average TB patient, if untreated can infect 12 others (1). Thus, to prevent the rise in the number of patients, all contacts of an identified patient should be screened and tested for the disease. TB is one of the major causes of loss of human life, infertility, loss of productivity and social stigma, especially against women and children.
Overall, one-third of the world’s population is currently infected with the TB bacillus. 5-10% of people who are infected with TB bacilli become sick or infectious at some time during their lifetime and historically, tuberculosis has been one of the world’s biggest killers.
Globally, there were an estimated 9.27 million incident cases of TB in 1997 (2). Most of the estimated cases in 2007 were in Asia (55%) and Africa (31%) (2). Tuberculosis has been nearly eliminated from the developed world, and the prevalence rates have dropped drastically (3). At the same time, Asia and Africa share 86% of the case burden from the disease. It is estimated that within the next 10 years, 300 million people will become infected by TB. Nearly one third of over 11,000 business leaders from all over the world expect tuberculosis to affect their business in the next 5 years, and one out of ten expect the effect to be serious (4). Keeping all these facts in mind, we can no longer afford to have tubular vision, only when we have accepted the enormity of the problem that we can we work towards a reasonable solution
TB in India
One fourth of all TB patients are in India, making it the country with the highest TB burden in the world. More than 1,000 people die every day, almost 400,000 each year (5). TB is also the biggest killer of people in the productive age group i.e. 15-49 years. Recovery takes 3 to 4 months, but very often, the poor lose their jobs because of the social stigma against the disease, and the loss of wages has disastrous consequences to entire families. The loss to Indian economy is US$ 300 million in direct costs, and US$ 3 billion in indirect costs (1). The prevalence of infection in India (as judged by the standard tuberculin test) is about 30% (6). The prevalence of bacteriological confirmed disease was 4 per 1000, and the incidence of new cases was about 1.5 per 1000 (7).
There is horrifying discrimination against TB patients. Every year 100,000 women suffering from TB are expelled from their families to die of disease and starvation, and 300,000 children are thrown out of school (8) because of TB or forced to leave school because a wage earning parent has TB. One important reason for the failure of TB eradication is the social problems associated with the disease, which has existed since times immemorial. Centuries ago, TB was considered as a curse of the gods and any patient was treated like an outcast. But even in today’s era of science and technology the situation has not improved; we still seem to be living in the dark ages. Discrimination against women of all ages continues. In many families an infected girl child is not treated at all, instead is left to die. People are forced to leave their jobs if their employers get knowledge of their condition. All these myths and taboos need to be dispelled and TB shown to be a common bacterial infection like many others so the patient can be treated with magnanimity, compassion and love by friends, family and society.
HIV and TB
HIV and TB form a lethal combination, each speeding the other’s progress. HIV weakens the immune system. Someone who is HIV-positive and infected with TB bacilli is many times more likely to become sick with TB than someone infected with TB bacilli who is HIV-negative. TB is a leading cause of death amongst people who are HIV-positive. In Africa, HIV is the single most important factor contributing to the increase in incidence of TB since 1990.
The DOTS Programme
Control means reduction in the prevalence and incidence of disease in the community. The WHO definition of control is when the prevalence of infection is less than 1% in the age 0-14 years. In the absence of a reliable vaccine, the most powerful weapon to achieve this is active case finding and treatment (10).
Treatment of tuberculosis has been standardised by the WHO promoted programme called DOTS (Directly Observed Therapy Short-course), launched in 2006. DOTS has been proved to be the most successful and cost-effective method of TB treatment and has succeeded in markedly decreasing the prevalence of the disease from the world. DOTS is a 6 month therapy in which a patient needs to take the medication 60 times in a appointed DOTS centre in the presence of a volunteer or a semi-trained professional. The medicines are not given for home consumption. This is because people are either careless, or fear the disclosure of their condition and hence stop taking the medicines on a regular basis. Default can lead to MDR (Multi Drug Resistant) TB, the treatment of which is expensive and not easily accessible. DOTS-plus for MDR is not universally available, actually the first step in controlling MDR-TB is prevention by full implementation of DOTS, in order to combat an emerging epidemic. Effective DOTS program is the prerequisite for implementation of DOTS-plus (11). Each patient of MDR infects 12 others with MDR, this has led to the very real fear of an MDR epidemic.
DOTS has been shown to be effective in many situations across the world but the main reason for its success was effective planning and implementation. India launched its DOTS program in 1997 and to date more than 97% of the country has DOTS coverage.
We recently started getting involved with Operation ASHA which is one of the largest Non-Governmental Organizations working for TB control and treatment. It is currently serving a population of 2,000,000 slum dwellers in urban India, operating in 10 cities in 5 states: Delhi, Punjab, UP, Rajasthan and Haryana. Operation ASHA has perfected a low cost, patient-friendly, replicable model, which can be effectively utilized in other parts of the world (http://s01.opasha.org/).
“Tuberculosis is a scar on the face of Earth,” says Dr. Shelly Batra, MD, the Founder-President of Operation ASHA. She is a renowned gynaecological surgeon working with a major hospital in Delhi. For two decades she has operated on needy patients free of cost and worked pro-bono for patient education.
“Three years back we decided to focus on one public health problem where the need is immense,’ says Dr. Batra, “and we decided on TB as our focus. TB elimination is one of the millennium development goals of the United Nations (12), thus WHO and major international agencies are providing tremendous support by way of free diagnostics and medicines, which constitute eighty percent of our costs. Our cost leverage is 25 times. We spend only 15 dollars to treat a patient, because medicines, which constitute $310, and public facilities worth another $50 are provided free by the government. This makes sure that the donor’s money produces maximum results because of our highly cost effective and result oriented programme.”
Operation ASHA’s aim is to provide TB treatment at a time and place convenient to patients, at centers located deep in the urban slums. In the WHO’s DOTS program, patients need to visit a treatment center about 70 times over a seven month period. Therefore accessibility of DOTS centers is a key issue. The government of India’s Revised National TB Control Programme (RNTCP) provides adequate facilities by way of public hospitals, physicians, diagnostics like sputum testing centres, and there are more than adequate amounts of ATT medicines available in the warehouses of public hospitals. What are lacking are adequate DOTs centres, for which the government is inviting and encouraging public-private partnerships. Right now, there is a high rate of default or missing doses, partly because the DOTS centers (from which medication has to be taken) are few and far between, and open at inconvenient times. It has been found in one study that the distance and travel costs to a TB service center were the factors associated with delay in seeking diagnosis of tuberculosis (13). A large number of TB patients belong to the marginalized section of society, who cannot afford to let their family starve for the sake of medication.
Operation ASHA has solved the problem by establishing a critical network of centers, embedded deep in the urban slums, that increases the accessibility of the drugs and other facilities for the patients. TB treatment has been made available at the doorsteps of the slum dwellers. Moreover, these centers are open early in the morning or late at night, so patients can carry on with their day to day activities and get their treatment at a time that does not make them lose their daily wages. Operation ASHA has involved the community for delivering DOTS, and has enrolled providers and counsellors, all of whom belong to the community they serve.
DOTS centers are manned by providers, who, while carrying out their daily business, also provide TB treatment to patients. Providers provide the space for running a DOTS centres in their premises. Centres have been opened in temples, small shops, phone booths, religious centers and high traffic areas such as bus stops and entrances to slums. Anyone who wishes to serve the community, can become a DOTS provider. A DOTS provider is trained by the Operation ASHA staff. A simple 2 hours training is all that is needed. Providers are offered basic remuneration, and are the part time employees of the organization. To make sure the providers stay focused and sincere, the system has been designed in such a way that their regular business does not suffer. The providers are paid an incentive- based salary, which is approximately 25% of their monthly earnings. Their status in the society is enhanced considerably because they are treated like doctors who are curing people of a deadly disease. Moreover, there are economic benefits to those engaged in business because of increase of visits to their establishments.
All that is needed to open a DOTS center is the space of about 5 sq feet, in which to keep a rack containing the individually labelled boxes of medicines, and also a water jug, weighing machine, disposable glasses for water, patients cards given by the RNTCP and colour coded boxes containing OTC drugs to treat fever, acidity and vomiting. Most patients come to DOTS centres early morning, this includes workers, women, and school children. Factory workers doing evening shifts come in the evening after work. All a provider has to do, when a patient comes, is to identify the patients’ box of medicine, make the patient swallow it in his presence, and put a tick on the card. The OTC drugs are there not only to treat side effects of the disease, they are given to anyone in the community who needs them, thus everyone, not only TB patients, are encouraged to visit the center, which is recognised as a community health center, not a just TB treatment center. This is helps reduce the stigma against TB.
For every two centers, Operation ASHA has one full time counsellor who has many responsibilities. Suspected cases are sent by the counsellor to visit the nearest diagnostic facility, where sputum test is performed, and then to the public hospital, where the physician examine the patient, and decides on the medicine. It is the job of the counsellor to get the entire box of 6 months treatment allotted and kept in the DOTS center nearest to the patient’s house. Well before starting treatment, the counsellor has to educate the patient and entire families in order to minimize default. Patients are warned of the dangers of missing the dose and subsequently developing MDR-TB. The patients’ families are persuaded to treat the person with kindness and compassion.
The counsellor has to spend 4 hours in the DOTS center every morning, when there are the most patients, and help the provider in giving the medicine. At this time, patients’ questions are answered and doubts are cleared. The counsellors also carry out daily checks to see if any patients have missed a dose. In case of a patient skipping a dose, they trace the patient to his house and repeat the counselling in front of the patient’s entire family to bring him back into the system. The counsellors are chosen from the community they serve so that they are familiar with the patients and their families, and can trace patients to their houses in areas where there are small huts, and no house number or road number for identification. Because of this intensive counseling, Operation ASHA’s default rate is less than 2%, by far the best in the world.
Counsellors also visit five families in their geographical area on a daily basis. They go door to door and educate people about the symptoms of TB, thus they are carrying out active case finding. They also conduct fortnightly camps, which are attended by about 50 to 100 slum dwellers, where again patients are educated about TB and encouraged to come forward for testing. With all this, the detection rate has gone up by 78% in South Delhi region. The counsellors are chosen with great care – they need to have a high school diploma and are made to undergo 4-6 weeks of training at the NGO’s Delhi office, after which they have to pass a written test and a mock counselling session. Only then are they recruited and sent into the field. The counsellors get an incentive based salary where incentives are given both for zero default and for finding new cases in the community.
“TB is not just a disease, it is a socio-economic issue,” declares Dr. Shelly Batra. “TB treatment has great economic benefits. It can safely be said that TB treatment leads to improved productivity, economic upliftment and empowerment of women and children and societies as a whole.”
At top management level this organization has senior doctors, businessmen and bureaucrats who raise funds to support the work by collecting donations and organizing sales and auctions of Indian handicrafts in India and the US.
Having scripted one of the best treatment fights in the world, Operation ASHA enjoys patronage from some of the best academicians, institutes, and governments of the world. We were taken around on a tour of the facilities and the set-up is exemplary in its organization. It was a pleasure getting to see how a small step became a highly successful venture with path-breaking results, which have been lauded by the Government of India, and many other world bodies. This year, Operation ASHA has been elected on the board of Stop-TB partnership, a partnership housed by the WHO, to represent the NGOs of the developing world.
Thus we can conclude by saying that this burning issue needs to be tackled on a war footing and needs a “hammer and tongs” approach. We can make an impact only if we can treat a large number of patients simultaneously. DOTS expansion and providing flexi-DOTS are the need of the hour. This, in the present scenario, seems the best approach for eradication.
Before finishing, we would like to recount a patient’s narrative:
One of Operation ASHA’s patients is a 12 year old girl, Rimi. She lives in the slums of Delhi, and had been unable to go to school for more than a month because of constant chest pain and low grade fever. Her father had suffered from tuberculosis of the lungs, and had been treated successfully about a year before in a government hospital. Since he had suffered the disease himself, he was naturally concerned about his daughter’s recent symptoms. He met with the volunteers of Operation ASHA who took Rimi into their care and started her on treatment.
Rimi takes her medicines from Operation ASHA’s local DOTS provider, who lives about ten yards from her house. She visits the treatment centre early in the morning, and hence she doesn’t need to miss even a single day of school.
Rimi now feels fit and fine. The fever has left her, so has the chest pain. She is living a normal life, going to school and playing with other children. Once a fortnight her parents reward her by taking her to the cinema or buying her an ice-cream. She is happy and optimistic about the future.
“When I finish school, I want to train to be a nurse,” she declares. “Then I want to work with Operation ASHA, so that I can help others, just as you have helped me.”
If Rimi can help, so can all of us. Operation ASHA spends an unbelievably low amount to treat a TB patient and give them back their life of dignity and self respect. It made us think that for little more than a price of a meal, a life was being saved at these centers. A little introspection is all that is needed, and each one of us can contribute to this cause. While carrying on our day to day jobs and earning a living, we could simultaneously devote some of our time to community work, and that will make all the difference. After all it’s not just the fight of those suffering from the disease but of all of us. If TB is to be eradicated, it will take more than just a few guidelines. It needs all of us to take care of our brethren, to go above the red tape and the constant excuses, and replace jargon with concrete actions. Once all of us decide to do our part, just as the members of Operation ASHA have done, it will not be long before TB control becomes a reality.
Radhika Batra is a first year medical student at Santosh Medical College and Viren Kaul is a Lancet Student Regional Advisor and an intern at the Sir Ganga Ram Hospital in Delhi in India.
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11. WHO (2004) – TB/HIV- A clinical manual, 2nd edition
12. WHO(2003) World Health Report 2003, Shaping the future
13. Saly S, Onozaki I, Ishikawa N., 2006, “Decentralized DOTS shortens delay to TB treatment significantly in Cambodia ”, Kekkaku, 2006 Jul;81(7):467-74