Educating Tuberculosis patients for excellent results

Competition Finalist

This entry has been selected as a finalist in the
Patients | Choices | Empowerment competition.

Knowledge is power. Tuberculosis patients must visit a treatment centre 60 times in 6 months to get medication.They find it difficult to continue treatment and adhere to the regimen. Intensive education of patients, families and communities saves lives by ensuring compliance , prevents missed doses and subsequent Multi-Drug-Resistant Tuberculosis, and minimizes the spread of Tuberculosis.

About You

Organization: Operation ASHA Visit websitemore ↓↑ hide↑ hide

Section 1: You

First Name

shelly

Last Name

batra

Website URL

Organization

Operation ASHA

Country

India, DL

Section 2: Your Organization

Organization Name

Operation ASHA

Organization Website

Organization Phone

9310298004

Organization Address

C 638 sarita vihar New Delhi

Is your organization a

Non‐profit/NGO/citizen sector organization

Organization Country

India

Your idea

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Name Your Project

Educating Tuberculosis patients for excellent results

Country and state your work focuses on

India, DL

Describe Your Idea

Knowledge is power. Tuberculosis patients must visit a treatment centre 60 times in 6 months to get medication.They find it difficult to continue treatment and adhere to the regimen. Intensive education of patients, families and communities saves lives by ensuring compliance , prevents missed doses and subsequent Multi-Drug-Resistant Tuberculosis, and minimizes the spread of Tuberculosis.

Website URL

Innovation

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What makes your idea unique?

Tuberculosis patients are so frightened of the disease that they go into denial. Suspected cases refuse to get tested. Confirmed patients avoid treatment, because it is time-consuming and costly to actually go to a treatment centre thrice a week. There is so much stigma that patients hide their disease from families or employers. Our Counselors carry our thorough education of patients and their families. They explain that Tuberculosis is a bacterial infection, fully curable, provided one gets the complete treatment. Once patients realise that missing doses can lead to Multi-Drug-Resistant Tuberculosis, which is difficult and expensive to treat, they are much more motivated to adhere to the treatment. Counselors direct patients to nearby treatment centres accessible on foot, opened at convenient hours. Counseling of family members ensures that patients get loving care and proper nutrition. Patients are taught how to prevent infection to others by simple precautions. This ensures that there is no discrimination. If a patient misses a single dose, immediate action is taken. The counselor visits the patient’s house to repeat the education. Patients are also told about the side- effects of the medicines, and how they can be minimized. Trusted community leaders are supporting this endeavour. Our incentive-based salaries ensure default tracking and active case finding. Together with Microsoft Research and IIH ( Innovators In Health), we have successfully developed handheld biometric devices to identify each dose taken by each patient, which prevents 'gaming' of the system. These are installed at 13 centres, and nearly 800 patients are on the biometric device.Using Technology for minimising default is another unique idea, which has proved its worth.

Do you have a patent for this idea?

Impact

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What impact have you had?

Multi-pronged approach, of involving patients, families and community in tuberculosis treatment has had had a great impact on the outcome of disease. We have treated 6700 patients in the past 4 years, prevented spread of disease to 80,400 others. Intensive support by counselors ensures compliance, therefore our default rate is as low as 2%. Nearly 95% of our patients complete the full treatment, thus regaining health and vitally. We have achieved substantial results in preventing discrimination against Tuberculosis patients. In the past 4 years, not a single patient enrolled in Operation ASHA’s program has lost a job or was thrown out of the family because of TB, and not a single child was thrown out of school. Counselors, who get an incentive based salary, carry our education camps in slums, where they tell people all about Tuberculosis, especially the symptoms, and encourage suspects to come forward for testing. Therefore, in South Delhi, where Operation ASHA started work, detection rate has gone up by 95%. Our Counselors address the fears of the people, who often regard TB as a dreaded and fatal disease. Once these fears are dispelled and myths busted, patients have the courage to accept that they have the disease and the will-power and commitment to get the full treatment . We are employing slumdwellers as our counselors, because we believe in comprehensive community involvement. Our patients have also benefited by getting protein, OTC drugs, food rations , and other means to improve living conditions.

Problem

The primary problem is of high default rate, which leads to the manmade epidemic of Multi-Drug-Resistant Tuberculosis. One reason for this is ignorance.People believe that tuberculosis leads to certain death, and all those who come in contact with a TB patient will also die. Also, there is fear of losing jobs. In India, each year 100,000 women are thrown out of families to die of disease and starvation if they have TB, and 300,000 children thrown out of school. There is of lack of information regarding free and excellent TB treatment provided by the government’s TB control program. Another reason for default is that TB treatment centres are located at long distance, open and inconvenient hours. Once patients find that TB diagnosis and treatment are available for free, and all medicines are available at their doorsteps, again for free, they are happy to enrol in the system.

Actions

We are involving the community comprehensively. We have taken TB treatment and education to the doorsteps of slum-dwellers. Our centres are situated in small shops, temples, etc, for easy accessibility, and open early morning and late night, so no patient needs to miss work and wages to get the medicine. Our counselors are themselves slum-dwellers chosen from the community they serve. We are leveraging socio-religious leaders to re-inforce our message. We are giving an incentive based salary to our staff, where they get a bonus for each new patient detected, and a bonus for zero default. We are collaborating with international organizations, families and foundations in order to scale up. For example, in Moradabd, our work is being supported by the Prajnopaya Foundation, that supports the visions of His Holiness the Dalai Lama.

Results

We have empowered community workers with extensive knowledge about tuberculosis, which they impart to others. This include symptoms of TB, what needs to be done, how the treatment should be taken, what diet is needed, how to prevent infecting others, and what is the risk of missing doses. Our counselors carry out education camps in the slums, and also visit families door-to door, to give this message. Patients who have been having symptoms of TB tend to go into denial , but with proper counseling, they gather courage to face the truth, and are coming forward for testing, because they have faith that they will be cured. Family members are encouraged to give support to patients, which minimises discrimination. Our partnerships ensure that we scale operations rapidly, and also that the international community is made aware of the plight of the patients and the need to work in tuberculosis.

What will it take for your project to be successful over the next three years? Please address each year separately, if possible.

Four key parameters will determine the success of this project over the next three years.
First is meeting the fundraising target, which has been the biggest challenge. But as Operation ASHA grows and develops more relationships, the difficulty is going down. This is proved by growth in operating budget: nearly 15 times in four years. I am confident this challenge will be met.

The second challenge is to built internal capacity by appointing a full time CFO and expanding training capacity. This will ensure that our growth targets are met. We have recently employed a Chief Technical Officer for added value. Simultaneously, the Management Information System needs to expand. For example, the Electronic Medical Record System (developed in collaboration with a Boston based nonprofit headed by a PhD from MIT) is being expanded to handle different levels simultaneously: national, state and city. It was originally build for operations in a few cities in one state.
The third point is regarding the Board. With all this, board is being developed further by bringing in management experts.
The fourth point is regarding communication. With rapid growth in all areas: fundraising, area of operation, staff, volunteers, members of the board and associate board, relations with public health officials in every new city, state and country, an important challenge is to develop the right communication strategy to keep all sections well-informed and fully involved. So OpASHA has hired a communications expert with thirty years of experience, not only to give her time and talent but also to train key persons in the senior management level.
I have no doubt that OpASHA will be able to meet all the challenges and remain as successful as ever.

What would prevent your project from being a success?

I am leaving no stone unturned to ensure success. Tuberculosis is curable, the treatment is there for free, through the WHO and government channels, so why should any patient suffer and remain without treatment? Treatment modality is DOTS ( Directly Observed therapy, short course), in which patients need to swallow medicine at a designated DOTS centre, under direct supervision. This ensures that there is no default. The need of the hour is several more DOTs centres, conveniently located, which means a much larger network of dedicated persons. I am trying to mobilize support from individuals from different countries and professions, from families, foundations and governments, and carrying our fundraising in India, US and Europe. With so much support, I see no scope for failure. We have the internal resources in place for rapid scaling, and the more the funds, the more service we can provide to needy patients.

How many people will your project serve annually?

More than 10,000

What is the average monthly household income in your target community, in US Dollars?

Less than $50

Does your project seek to have an impact on public policy?

Yes

Sustainability

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What stage is your project in?

Operating for 1‐5 years

In what country?

India, MP

Is your initiative connected to an established organization?

Yes

If yes, provide organization name.

Operation ASHA

How long has this organization been operating?

1‐5 years

Does your organization have a Board of Directors or an Advisory Board?

Yes

Does your organization have any non-monetary partnerships with NGOs?

Yes

Does your organization have any non-monetary partnerships with businesses?

Yes

Does your organization have any non-monetary partnerships with government?

Yes

Please tell us more about how these partnerships are critical to the success of your innovation.

The government has an excellent National TB Control Program which is critical to our success. Diagnostic facilities, physicians’ consultations and medicines, all are for free. We also get OTC drugs, food rations, protein powders, medicines to treat symptoms and side effects , and all stationary from the government. This ensures that we can leverage our investment several times over and our costs are low. 80% of our costs go into the core program, with 60% being spent on salaries of counselors, who are trained to impart TB education and motivate suspects for testing, and persuade families and employers to treat patients with compassion. Another NGO, TB Association of India gives us blankets and food rations for distribution. MIT-JPAL is carrying our randomized controlled trials of our work, which will help us learn and improve. Microsoft has developed handheld devices for default tracking, which will help eliminate human error and ‘gaming’.

What are the three most important actions needed to grow your initiative or organization?

We need to do fundraising in a very big way. Tuberculosis is rampant in the world.Though our costs are very low, we need funds to scale operations. Right now my organization is serving 3.5 million slum dwellers in 14 cities, in 6 states of India. We need 240,000 dollars next year for our program in India.

We also need to make the world aware of the need to work in TB. TB is fully curable, but there are 8 million cases the world going without treatment. One fourth of these are in India. Each patient infects 12 others, so the disease is spreading. Incomplete treatment leads to the worst scenario, that of MDR-TB, that requires huge amounts of money and is difficult to diagnose and treat, for the treatment cannot be given by trained community providers. Each patient that develops MDR-TB has the potential to spread it to 12 others in the community. This chain has to be broken by timely detection and full and final treatment of existing patients, which is only possible if TB education and counseling become an integral part of the program

The Story

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What was the defining moment that led you to this innovation?

I joined med school in 1977. I have witnessed, first hand, the devastation caused by disease, and how entire families starve and become homeless if a wage-earner falls sick. I specialized in Obstetrics and Gynecology, and honed my medical skills at AIIMS, the premier institution of India, doing Advanced Laproscopy Surgery and dealing with High-Risk Pregnancies.Over the years, I gathered many awards and accolades, but moved on each time to learn, serve, and have a greater impact.
After 15 years in public hospitals, when I left and joined a posh, private hospital, I was horrified to find that the poor were not welcome.The kind of indignity that the poor have to suffer, especially when they need medical help, was shocking. I set up a partnership with a senior Government officer Sandeep Ahuja, MPP, and together we served the slum dwellers for several years, where we would visit slums, understand the health needs of the communities and give free consultations. Also, I would do about 60 -70 surgeries per year for the needy (Caesarians, hysterectomies, ovarian cystectomies, D&C, cervical biopsies and cryo, to name a few), and Sandeep would utilise his network to provide the funds needed to buy medicines or pay for a hospital bed.
The defining moment came when at a point in my life I suffered tremendous personal loss and overwhelming grief, but overcame it all to introspect, discuss, understand the need of the hour,and forge ahead. There was a time of great sorrow,but that time passed. Healing takes time, and when it happened, I decided to take "the road less travelled by", as the poet Robert Frost has said. Sandeep and I discussed our experiences at length, and subsequent brain storming showed how we could leverage our partnership, and get maximum benefits with limited resources. We realized that there is tremendous need in Tuberculosis. India has one fourth the burden of the world, and 2 million new cases a year, even though Tuberculosis is curable. MDR Tuberculosis is the emerging man-made epidemic, which occurs because of missing doses. Patients miss doses for so many reasons, because of denial, fear of losing jobs, fear of losing their place in the homes, or simply not knowing where to go and whom to turn to if the dreaded symptoms appear. Years of experience in treating patients from disadvantaged background helped me to understand their background and psyche. Another reason for choosing Tuberculosis was that it is one of the United Nation’s Millennium Development Goals, therefore a lot of infrastructure, i.e. diagnostics, physicians consultation , medicines have been provided free from the World Health Organisation and the government. So we can leverage our investment several times over. I also found that slum-dwellers,who are a migratory population, have the highest default rate. They have no knowledge about how to access the infrastructure to fight Tuberculosis. Ignorance, poverty, and malnutrition make things worse. The first pilot taught me that we cannot force patients to take medicine. They have to do it voluntarily. We can make headway only if we target the root cause of default, which is ignorance and fear.

Tell us about the social innovator behind this idea.

Margaret Mead believed that “A small group of thoughtful, committed citizens can change the world“ In essence, this describes what a social innovator is all about.
In my organisation, my CEO, Sandeep Ahuja, MPP, can be regarded as the social innovator whose enterprenual skills, passion to serve the needy, and sharp financial and business brain have combined to make this program innovative. Sandeep served as Additional Commissioner to Government of India for several years. He has done his MPP from University of Chicago, where he was given the McCormick Tribune leadership award. He has great networking skills, and is equally at home with slum dwellers as with senior Government officials and well-heeled business leaders. He is a workaholic and a born leader, and can stimulate his team to deliver their best for the organization. He is willing to learn,and I can remember teaching him so many things, from English poetry to causes of maternal mortality in India!
I think what makes a social innovator is that one vital spark, that transforms an ordinary being to someone who has a touch of genius. All said and done, TB treatment is a dull business. With his numerous innovations such as incentive based salaries, and his personal dynamism and enthusiasm, Sandeep has made TB treatment alive and sparkling, a thing to be pursued with great gusto and all-round effort.

How did you first hear about Changemakers?

Friend or family member

If through another, please provide the name of the organization or company

50 words or fewer

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205 weeks ago Hylton Sarcinelli Luz said: Prezado Dr. Shelly Batra, Parabenizo-o pelo seu trabalho e empenho. Muito importante a construção de meios para fortalecer a ... about this Competition Entry. - read more >
206 weeks ago Educating Tuberculosis patients for excellent results has been chosen as a winner in Patients | Choices | Empowerment.
208 weeks ago said: congratulations on being a finalist.....you and sandeep both deserve to be recognized for your outstanding mission and just amazing ... about this Competition Entry. - read more >
209 weeks ago Jacquelyn Caglia said: Congratulations on being selected as a finalist! about this Competition Entry. - read more >
209 weeks ago Educating Tuberculosis patients for excellent results has been chosen as a finalist in Patients | Choices | Empowerment.
216 weeks ago Dr. Shelly Batra updated this Competition Entry.
216 weeks ago Dr. Shelly Batra updated this Competition Entry.
216 weeks ago Dr. Shelly Batra updated this Competition Entry.
217 weeks ago Dr. Shelly Batra said: Thank you Linda. I believe that TB treatment needs a holistic approach, with education and community empowerment being the foundations ... about this Competition Entry. - read more >
217 weeks ago Dr. Shelly Batra said: Thank you for your comments. Sandeep Ahuja, my CEO, will be visiting Africa and Morocco in October, and shall spend 3 days in kenya, ... about this Competition Entry. - read more >