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A Trail Of TB Trauma: A look at those battling the disease at the grassroots

As India struggles to provide care to 28 lakh TB patients, here’s a look at those battling the disease at the grassroots

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Lalita Nadhal Dhande, 25, walks out of her home in Ukupatty village in Melghat’s Dharni area only after covering her face with a handkerchief. The ASHA worker knows all too well how tuberculosis (TB) spreads; after all, she has administered medicines to 10 TB patients in her village so far, who have now fully recovered. Unfortunately, Lalita hasn’t. She is undergoing treatment for multi-drug resistant TB (MDR-TB).

“I don’t know how I got TB,” says Lalita, who is the DOTS provider for her village, without a trace of irony. When asked if it could be due to regular contact with other TB patients, she shrugs.  

 “I keep vomiting all the time and I am not able to eat the medicines,” says Lalita. Her treatment for MDR-TB started in February this year and will continue for over a year-and-a-half.

Mother of a six-year-old daughter and a three-year-old son, the disease has been particularly difficult for her as she had to be cautious around her children in the early stages. While her treatment is on track, her case raises concerns about the safety of those working at the grassroots to contain the TB bacteria.


Anyone can be a DOTS provider, since the primary responsibility is merely to ensure that the patients eat their medicines every alternate day. They watch over, cajole, and encourage patients to stick to the treatment regimen.

In rural areas, many ASHA workers like Lalita are DOTS providers. When their patient is cured, they get an incentive, but they get no protective gear. Masks, gloves or nutritious food are not part of the deal and so they often fall prey to the bacteria.  

It takes a village...

After healthcare workers, it is family members who tend to be the primary caregivers and who suffer the most. They offer support when possible, provide emotional support when needed, and bear the brunt of the illness. 
Shivkanya Male, a resident of Latur’s Mataji Nagar, can vouch for that, having witnessed her only child struggle with TB treatment for years now.

Her son Kiran, 26, was a law student until he tested positive for MDR-TB in December 2014. The past two years have been an endless cycle of gulping down strong medicines and side-effects. Sick of the vomiting, dizziness and acidity that often followed after every dose, he even gave up a few times. 

Now, something worse is happening. “He keeps touching his skin and pointing out that it is becoming black. He talks to himself all the time,” his mother Shivkanya says.

 Many MDR-TB patients grow irritable, hallucinate, and, in rare cases, lose complete touch with reality. It’s too much of a strain for Shivkanya to bear. She has an ageing mother at home and a son who is yet to complete his studies with no other option but to be strong.  

“We had visited several local doctors first. He has been ill for around three years now,” says the mother who worries that while the TB bacteria shrivels inside her son’s lungs, the young man with a blank stare is nowhere close to the child she raised.  

The bacteria might be losing the battle with drugs but the son she knows is already lost.

Falling through the gaps

The Revised National Tuberculosis Control Programme (RNTCP) reaches 632 districts in the country and over a billion Indians. And yet the country has reported 28 lakh TB patients—the real number is estimated to be much higher.

The patients could be in rural or tribal areas, slums or high rises—these employees have to find them, educate them about the treatment regime and ensure they stick to it for as long as required.

However, these foot soldiers are often not paid for months. An RNTCP staff working in Latur, on condition of anonymity, says “Our salaries don’t come for two to three months at times. We have families to take care of and it becomes very taxing.” 

With villages spread out, travel is not as simple as hopping on to a local bus or train. “We normally take our bikes which need petrol. We are not reimbursed for long. At times, we have to do it at our personal expense,” he explains. 

In most rural areas, where the staff works diligently to help patients, they have little to fall back on even though they play the most crucial role in the delivery of the healthcare system.  

A blighted future

Sixteen-year-old Pankhudi (name changed on request) is too sick to attend school but all she wants to do is study. “I will get better, won’t I?” asks the teenager who was born HIV positive. Her father died of AIDS and her mother is also infected with the virus. 

HIV and TB tend to be co-infections. As immunity levels of the patient drops, they become susceptible to infections‑—TB being one of the most common.

Pankhudi is being treated for TB for the past few months and religiously gulps down the pills. Medicines are no strangers to her. 

“I have not told anyone that she has TB. She coughs a lot and her periods too have stopped,” her worried mother Anjali says. “She wants to study a lot. Will she be able to?”  

Giving exams, pouring over textbooks and meeting her classmates every day are the simple joys of life that TB patients like her crave.

The immune  

Then there are those on who the drugs are clearly not working. Sapna Sahoo, 35, is a housewife living in Amravati. She took her medicines for her TB on time, gulped down more medicines after she vomited it out, but has now tested positive for MDR-TB.

Her husband Rupesh says, “She gets irritated easily and sometimes repeats things over and over again.”

Sapna’s case is curious. She initially began responding to her treatment well and even gained weight. Once over 60 kg, her dosage had to be adjusted according to the programme’s rules and that is when things started going downhill as the side-effects piled up. Vijay Tale, who works with Project Axshya as a TB counsellor, says, “She has been one of my most obedient patients and yet her tests for TB continues to return positive.” Tale worries that she might drop out of the programme as the family is losing faith in it. 

A programme that struggles to ensure that patients stick to the regime cannot afford to lose the patient’s confidence; by that yardstick, unfortunately, India may be losing the fight to TB.

(The writer is a recipient of the 2016 REACH Lilly MDR-TB Partnership National Media Fellowship for Reporting on TB).

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