By Lipi Mehta:
When writer Dorothy Parker set out to write ‘The Great American Novel’, she actually found herself in a TB sanatorium in the Swiss mountains. Looking at the condition of the patients around her, she wrote, “TB or not TB, that is the question.” With 2.5 lakh deaths happening in India every year because of this disease, this is perhaps the question we need to answer as well – how can India assure a patient’s journey from ‘TB’ to ‘Not TB’?
Plans and schemes look great on paper and there is no dearth of those when it comes to ending TB in India. But behind every great idea are the people who bring it to fruition. So, while since 1995, the government of India has initiated a TB control programme called DOTS (Directly Observed Treatment, Short-Course), which involves patients taking medicine under direct supervision, the treatment which can last anywhere between 6 months to 2 years is more like an arduous journey where, without support, the patient could be easily demotivated and could give up.
And that, in turn, means that TB will never leave our country.
But how is it that since 1995, 41 million have been treated because of this programme? That’s largely because some people are dedicating their lives to fighting the TB menace in our country where, if the problem is bad in urban areas, it’s even harder to tackle in rural India.
Katie Jordan, who worked with TB control NGO Operation ASHA shares her experience:
“Our team travelled over rivers, through woods, and down small dirt roads in order to reach the villages that Operation ASHA community health workers visit three times each week to identify and treat TB patients. Compounding the sheer distance and rough terrain that needs to be travelled, there are also unique and complex cultures in the rural tribal areas. Thus, instead of sending in workers from outside of the community, Operation ASHA trains and hires villagers to act as community health workers. Community health workers know the terrain, the language, the religion, and the customs. Most importantly, the patients trust them. By hiring local people, Operation ASHA provides respectable, safe jobs, a win-win situation for all involved.”
But things are tricky in our part of the world where many might just pretend that the patients have taken their medicine. This is where ASHA’s unique e-Compliance system comes in. To make sure that the dose has been successfully administered, the device records the electronic fingerprint of both the community health worker and the patient to verify that they are in the same place.
This approach has other benefits too, as Katie herself witnessed:
“The technology gives the community health worker leverage when treating their patients. Instead of just telling patients the reasons why taking their medications will benefit their health, they can point to the machine and say, “if you don’t take your medication, my boss will find out and I won’t be paid.” This tactic can be surprisingly effective for ensuring treatment adherence when the community health worker is the patient’s neighbour.”
From Chandigarh to Chennai, the stories of individuals who go out of their way to provide relief to TB patients are the stuff humanity is made of.
Take Paramjeet Kaur from Chandigarh for instance, who says that she looks after her patients the way she would care for her own children. When she hears of a patient not willing to take their medicine, she personally visits them again and explains why it is a must. She also counsels the family members of her patients and reminds them of how important it is to make someone with TB feel accepted and loved. This counselling of patients and their families is crucial when it comes to TB treatment.
DOTS provider Meenakshi Sundaram from Chennai travels around 6-7 km every day to give his patients their medicines and educates them about the side effects as well. He does this despite having lost a hand and injuring his foot permanently in a train accident, because as he says, “I can continue this work till my last breath.”
And what about stigma? It is no secret that TB patients are isolated and often ignored when they are suffering, a large reason for thousands in India to not seek treatment. DOTS provider Bani Kundu from Bankura in West Bengal ensures that patient anonymity is maintained. She goes out of her way to meet her patients at a place of their comfort, be it a bus stop or a restaurant, and even carries homemade food for some of her some patients in need. While she wishes that she can fight against the stigma in a stronger way, she says, “I am helping someone regain their health. That’s the biggest source of happiness for me.”
The fight towards #NoMoreTB is a difficult one, with 2 million Indians being affected each year. In this situation, even a single patient’s recovery is nothing less than a brick of hope. With the spirit and strength that hundreds of DOTS providers work, the possibility of us winning this fight seems a bit stronger each day. And it is to each and every one of them that the country owes a huge debt.