By Shelly Batra (Co-Founder and President, Operation ASHA)
TB – a disease that continues to plague the poorest
When I was a student in King George’s Medical College, India, a group of doctors came from the UK to visit our hospital. They said to my Professor,
May we see a tuberculosis (TB) patient.”
They wanted to see just one patient as a learning experience, because at that time, TB had largely been eradicated from high income countries. I recall my Professor’s reply:
We have wards and wards full.”
This was in the 70s. Today, there are 10.9 million new TB cases in the world every year. A disease which is as old as the hills has become a global pandemic, leading to huge suffering, economic loss and deaths. In fact, TB has been responsible for the death of more people than any other infectious disease in history. In 2006, I established Operation ASHA with a focus on TB, the biggest health crisis in the world and , which the World Health Organization declared a ‘global emergency’ in 1993.
Health systems challenges in India
We conducted extensive research to find out what the reason was for this sorry state of affairs with respect to tackling TB, focusing first on India. What we found was an eye-opener. India has a huge government program where there are well equipped TB centers all over the country. These have the best equipment, specialists, medicines & diagnostics, all available for free – everything was available- but not accessible. The challenge was of last-mile delivery (close to patients’ homes), which is essential both for early diagnosis and for ensuring completion of the six-month TB treatment course .
All over the country there are posters that say, if you are coughing, go to the nearest government laboratory for a sputum test. The message is loud and clear but unfortunately, it does not reach the people. No one seems to know where the nearest laboratory is located. Very often the disadvantaged are intimidated by government infrastructure and absenteeism in government programs is as high as 40%. How many times would a daily wager or laborer go for a simple sputum test to the lab? Each day means a loss of work, and when there is no work there is no food for the family. This is one of the reasons why, in some cases, patients go undetected for decades.
Those who do get diagnosed, find it impossible to travel every day to the government center in order to take their 6 month medication. In the DOTS program, medicines have to be swallowed at a designated center in the presence of a trained provider. Existing centers are few and far between and are open during working hours. It is unfeasible for patients to travel, say 10 miles daily, invest in bus fares, and suffer a loss of wages for the day. Patients who do initiate treatment often leave midway when they start feeling better, and this is how drug-resistance sets in.
Stigma and TB
Another issue is the stigma related to TB. Patients suffering with TB remain hidden in the shadows and live with fear, shame and guilt. Every day they struggle with negative thoughts:
TB is a curse from the gods. It’s because of my past karma. It’s a curse from the gods. I am doomed to die. My children will die.”
Every year, a 100,000 women are abandoned by their families if they have TB and 300,000 children forced to leave school. People are thrown out of jobs, and the loss of wages is 260 million GBP every year.
We concluded that the only solution was to fill the gaps within the government program, and we tackled this in several ways.
- We collaborated with the Indian government’s TB control program to get free services, including medicines from the government
- In urban slums, we opened treatment centers in the premises of community partners. This could be for instance, a religious place like a temple, mosque or gurdwara a local doctor’s clinic, or even a small shop. These would be conveniently located and open early morning and late at night
- Following success in India we applied this model in Cambodia
This was all about providing doorstep delivery, convenience and privacy.
- We hired a cadre of workers called TB Providers. They belonged to the same community they would serve. They would eat the same food and worship in a similar manner as the rest of the community. We train our Providers in nutrition and hygiene and other health issues, so that they project themselves as health workers, not TB workers. This helped them overcome stigma. Our Providers carry out the full spectrum of TB activities which includes awareness, detection and counselling of families. They facilitate testing of patients in the government centers, either by finding out what time the lab technician will be available, or by carrying sputum samples themselves to the lab. They also provide every medicine with their own hands, so every dose is supervised. They use eCompliance (a Microsoft Research collaboration) where we use fingerprints to track every dose taken. We are now using eyeAdherence, where iris scans are used for the same purpose. Providers help dispel myths, ensure unstigmatised provision of care, and also offer free over-the-counter medicines to take care of treatment side effects. Where patients are scattered, providers go on bicycles, motorcycles and even on boats, right up to the doorsteps of patients to do their work.
Outcomes of treatment
We have successfully overcome many challenges, and our results are there for all to see. A research paper by Soumya Swaminathan (Deputy Director General, WHO) says that
Our default rate is less than 3%, and we have a system where data fudging is not possible. A fingerprint/iris print cannot be fudged. According to Soumya, the treatment success rate in India is only 74%, while ours is 89%.
Our cost is also 32 times less than others. A post published by Deen Garba in CSIS (Center for Strategic and International Studies), says:
Globally, NGOs spend an average of $852 detecting each patient. By contrast, Operation ASHA spends $80 on both detection and treatment.”
While the fruits of labour give great happiness and success is sweet, I must truthfully say that it has been an uphill task. Over the years, I have faced ridicule, opposition, resistance and even threats. Even today there are some government officers who claim that their results are superlative and they don’t require NGOs, neither do they require technology for accuracy and transparency. No doubt it has been difficult, but I am not daunted. There’s miles to go, and I know there are many people like me, who work with courage and joy in their hearts, and together one day we hope to eradicate TB for good.