Despite the fact that TB is a treatable disease, it has assumed epidemic proportions in India, claiming the lives of 400,000 and newly infecting 2.2 million every year. India has the highest proportion of its population, 3.3 per capita, infected with TB and accounts for one-fifth of the world's TB burden.
There are more than 1 million TB patients who have no access to treatment throughout India, a quarter of whom live in North India. In the state of Delhi, where Operation ASHA's 34 DOTS centers currently serve 1,200 patients, there are nearly 20,000 more patients who still do not receive care. Delhi alone would need 200 more centers, and North India, thousands more, to properly serve its population
There are special groups of people who are highly vulnerable to infection by the TB bacterium, and there are whole communities where disease spreads like wildfire. In urban slums, where people live in unhygienic, illventilated shanties, with whole families packed into a hut say, 2o square feet area, if one patient is sputum positive, the disease spreads quickly to the rest of the family. Severe malnutrition , and recurrent infections, which further cause malnutrition, in these communities, are another predisposing factor for TB, and another is infection by HIV.
The number of TB patients is increasing at a horrifying speed, for several reasons. One is the lack of awareness of the disease, which makes patients neglect their symptoms till it is too late, another is the fear of death, for many feel that they will surely die if they have TB, and are therefore unable to accept the fact, they go into a state of denial. A very important reason for hiding the truth is the social stigma attached to TB. Women are thrown out of families, people lose their jobs, children thrown out of school because of the irrational belief that TB is fatal and will kill all those who live in proximity to a TB patient. On an average ,100,000 married family members are expelled from the family unit once they begin to show symptoms of the disease. Once removed from the family, these people have a seriously diminished quality of life and die on the streets of India due to complications of the disease and starvation.
The current scenario of TB treatment is dismal indeed. In spite of a government run control program that has lasted for decades, the number of patients is increasing every year. A very big problem is the lack of accessibility of DOTS therapy. Most of the DOTS centers are run by the government. These distribute medicines mostly from 10 am to 1pm. Not only that, the centers are over-crowded because each center caters to a large number of patients. Furthermore, the centers are few and far between. Many nonprofits (excluding Operation ASHA) also follow this methodology. As a result, the patients have to spend considerable time, effort and money to approach these centers. This system does not suit patients, who belong mostly to the disadvantaged communities, as they would essentially need to take the morning off and miss their earnings. Thus, the choice for many patients is to either feed the family or take their own medicine. Instead, many patients do not take the medicine at all or choose to take it intermittently. Missing a dose leads progressively to the development of drug-resistant TB, which is impossible to treat, almost fatal, and each such patient infects 12 more with a similar disease, leading to an ever increasing number of untreatable and fatal cases. Though no data is available, many experts feel that the number of drug-resistant patients is between 5-10% in cities, and possibly higher in rural areas, and is increasing.
TB has not got the requisite attention because it is a disease of the poor and the downtrodden, who do not have adequate influence with policy makers.
Current detection and cure rates:
- The detection in rate in the state of delhi, where we work is 296 per 100,000population. ( ref- Annual report. RNTCP program,. Govt of India).
- Operation ASHA’s detection rate is 360 per100,000. We are treating 50% of all the TB patients in South delhi, and the governement and remaining NGOs are treating the rest.
- Our recent cure rates have been 99%, mainly because of our ACSM activities, robust counseling system and default tracking.
- The biggest problem we are facing in our fight against TB is lack of education about Tuberculosis as a disease. This is the one reason that is responsible for delay in diagnosis, default, MDR, loss of lives, social stigma, loss of jobs and economic instability.
- Another problem is malnutrition, which makes matters worse. We are doing our utmost to overcome these challenges, and we have made TB Education the mission of our lives.
- We have seen that treatment and adherence is not possible without proper and repeated counseling of not just patients, but their families and whole communities.
- Another problem that we face is fundraising. We have the internal resources and business capabilities to scale up to many more centers which is the need of the hour. With a model where every center becomes self-sufficient after 2years because of the government grant, we need support to open new DOTS centers and to sustain them for 2 years. Fundraising remains our biggest challenge.
Our ACSM activities:
Right from the beginning of our work in TB, which started 2 years ago, we have focussed on ACSM activities. We are addressing the problem of ignorance and superstition in various communities. We are using the persons belonging to the community the serve, who speak the same language and belong to the same socio-religious group so that our message is accepted. One of the biggest problems that patients face is that DOTS centres are few and far between so they do not want to miss a days wages in order to get the treatment. We have tackled this problem by involving the community in delivery of DOTS, so that no patient has to spend time and money to get the medicine.
Another problem is of default. Many TB patients stop taking their medicine as soon as they start feeling better, this leads to default and drug resistance. We have brought down our default rate to less than 1% by adequate counseling before starting treatment, and again at 6 weeks, when the patient starts feeling better and is likely to default. Our fulltime counselors visit every patient who has missed a dose, and repeat the counseling to the whole family, and bring the patient back into the system.
Our objectives are as follows.
1. To increase the detection rate of TB
2. To decrease the social stigma attached to TB by proper education and communication
3. To ensure adherence or compliance for the full course of treatment which lasts 6- 7 months
4. To involve the community and enrol people from the community as DOTS providers and counselors, for better delivery of DOTS
5. To increase successful outcome of treatment.
1. The first and foremost is the involvement of councilors of the local municipality and members of state legislatures. They wield tremendous power over the local bureaucracy. They can ensure that the benefits of National Tuberculosis Programme are delivered to the people in their constituencies. This helps them capture votes at the time of elections. With one election or the other, for various bodies like the municipality, state legislature and the parliament, taking place practically every year, the councilors and legislators are more than willing to lend their help. Their education and sensitization to the utter lack of accessible DOTS centers in the slums goes a long way in convincing them of the need and ultimate establishment of DOTS centers that deliver therapy at a time and place that is convenient to patients in disadvantaged areas.
Sensitizing the law makers is the first step to harnessing their goodwill and power. This eliminates the usual apathy the bureaucracy has for disadvantaged areas. Education of the community leads to reduction in social stigma against TB. Millions of illiterate urban slum dwellers and village folk still think that TB in incurable: that anyone who contracts TB is likely to die just as their grandfather died or their mother died. Death due to TB is still not an uncommon occurrence with 400,000 persons dying of the disease in India every year. With an educational campaign that is scientifically designed, it is possible to convince the community that TB is not only treatable, many patients (like those suffering from extra-pulmonary TB and sputum smear negative patients) do not infect others. Furthermore, simple precautions can eliminate the chances of infection even from an ‘active’ (infective) patient. Introducing a (willing) person who has been fully treated and has since been living a productive life is of immense help, more so if the person belongs to that or a neighbouring community. Once the stigma is reduced, it is possible to find a treated patient or a socially-inclined person to support a DOTS center from her shop or home. Such involvement garners long term community support for the DOTS programme and leads to success of NTP. We have already experienced the power of this approach and have a municipal councilor in Chandralok in East Delhi running a DOTS center from her house. Similarly, a treated patient in Mazdoor Kalyan Kendra runs a center from the small shop he runs.
Another important constituency is the children. Their minds are impressionable. Educated scientifically, they ‘often become the most educated in the family and begin educating their parents. They become the activists and advocates. Unilever in India used this strategy to great advantage. They educated children on the cause of disease and how to prevent it, creating in the process a new market for their products and reaping new profits.’ (Ref from The Fortune at the Bottom of the Pyramid, by CK Prahalad, Wharton School Publishing, 2005). There are many municipal schools in the vicinity or within disadvantaged localities. Our project will focus on educating the children of these schools to the cause, symptoms, prevention and treatment of TB and the availability of comprehensive services under the NTP in which the patients does not have to pay a fee for any service. Not only that, ill effects of not completing the DOTS therapy and the chances of drug-resistance and consequent ill-effects will be discussed, so that children understand and become advocates of utilization and completion of DOTS therapy, striking at the root of drug-resistance.
2. Sensitization of policy makers/ municipal councillors and state legislators spurs them to take up the matter of proper implementation of NTP and expansion of DOTS and DOTS PLUS with public health officials. Education of patients and communities about their entitlement under NTP helps the community raise these issues with the local politicians and other leaders, especially when the leaders approach the community for support at the time of elections. The education of community, patients and children have substantial impact in accepting that TB is treatable like any other disease and reduction in social stigma. Giving a voice to the community and educating the policy makers goes a long way in implementing NTP intensively and combating the scourge of TB at both local and national levels.
3. Many communities have been educated about TB in general and about NTP, the benefits like free physicians’ services, diagnostics, medicines and cash incentive under this programme. Over 1,000 poor patients who were going untreated now have access to medicines at their doorstep at a time of their convenience. Operation ASHA has been conducting three meetings every month in the neglected communities and schools, many times with the involvement of municipal councilors and other leaders. These meetings have been attended by 50-300 persons.
OTHER AWARENESS ACTIVITIES
1. We have been regularly conducting 3 TB education camps every month. These are held in urban slums, schools, temples, religious places, community weekly bazaars, community canters, factories , and we are able to meet people from different professions, religions, and social strata.
2. Our counsellors visit a total of 30 to 50 families every day, within the areas they serve, to carry out TB education. These are just families who live in the vicinity of our centres, where our counsellors are well known, and their words carry weight. These may or may not have a TB patient in the family.
3. We are sensitising other nonprofits especially those working at grassroots level eg. microfinance organisations, to spread our education about TB
4. We are meeting the elite of the society in order to bring forward the enormity of the problem . We are trying to get our word to all citizens if the world. As President of Operation ASHA, I have been interviewed 8 times on Satellite Radio, Reach MD, USA, and also by TV ASIA of Chicago, who also covered my speech at the Annual charity gala held in each year in Chicago. Both SandeepAhuja, our CEO, and I have been interviewed twice by Chicago public Radio, NPR, world view, and one of the programs has been aired twice. Sandeep was in Chicago to address a press conference about our work in Nov 2009.
We have seen a tremendous improvement in the overall scenario ever since we started our ACSM activities. The impact of our work is as follows:
1. There is widespread support by the community to our work. More and more people, are coming forward and volunteering to support the DOTS programs. Our DOTS centres are opening up in places which are inaccessible by bus or car, where one has to walk miles on foot, thus patients belonging to these communities are being greatly benefited, for DOTS is available at a time and place convenient to them.
2. Because of our TB education camps there is increased awareness of TB symptoms and more and more people are coming forward for testing. Patents are realising the importance of getting their contacts tested for TB, and thus our detection rate has gone up as compared to the rest of the community.
3. In the recent past we have achieved adherence rate of more than 99%, and only less than !% default in urban slums.
4. Our successful outcome is 97%, with only3% death or failure.
5. Impact has been measured by data collected by government agencies and reported by government TB personnel.
6. In US, we have generated a tremendous amount of interest in the problem of TB among those people who were hardly ware of its existence. Individuals, foundations and families in the West have pledged support for DOTS and TB education.