Patiala: Every morning at around 9 am, Santosh Rani, an ASHA worker at Rajpura in Patiala, leaves on her scooty, navigating the narrow streets to check on tuberculosis (TB) patients as part of the 100-Day Campaign, a part of the National Strategic Plan for TB Elimination 2017-2025.
Paid a monthly salary of Rs 2,500, workers like her rely more on incentives for pregnancies – something that is missing for taking care of patients recovering from TB.
For months, these ASHA workers visit the homes of TB patients, help them undergo regular tests and medication. And when a patient recovers from TB, these workers get an incentive of Rs 1,000.
But that’s not always seamless, says Rani. “One of my patients tested negative for TB in April 2024, but my incentives still remain unpaid because the records have not yet been updated online,” she said.
ASHA workers deliver essential services under the National TB Elimination Programme (NTEP). Their work includes counselling, treatment adherence, and raising awareness about TB and its mental health implications. They help people with TB by visiting their homes and checking for symptoms and make sure people get tests like chest X-rays and Mantoux tests. The TB skin test, also called the Mantoux tuberculin skin test requires two visits with a healthcare provider. On the first visit, a test is placed. On the second visit, the test is read.
Beyond identifying and treating TB cases, ASHA workers provide critical emotional support to patients battling stigma, anxiety, and depression. Despite their dedication, they face significant challenges, including insufficient mental health training, delayed incentives, and lack of protective gear.
Also read: Tuberculosis Patients in Rural India Are Also Fighting Mental Illnesses
India accounts for nearly a fifth of the global TB burden, with an estimated 2.2 million new cases annually and 300,000 deaths. While TB case rates in India have declined, the progress is slower than anticipated. The decline is well below the 10% drop the World Health Organization (WHO) had targeted to be achieved by 2025, and the 17% decline projected for the following decade, to end TB by 2035.
For frontline workers like Rani, these statistics reflect the immense pressure they face daily. “We put our lives at risk to ensure TB patients get the care they need,” she says. “Pregnant women, elderly patients – we go door to door for them. And what do we get? Rs 300 for following up on a delivery case for the case for nine months, if the delivery happens in a private hospital, we won’t get any incentive. For TB patients, we receive Rs 1,000 if they complete their treatment and test negative. But if they abandon the treatment or pass away, we get nothing.”
Rani says Rs 300 is provided only when the entire pregnancy and delivery take place in a government hospital.
Rani recalls how emotionally taxing her work can be. “Patients require mental health counselling when diagnosed with TB, but we aren’t trained for this. We do it based on our experience. Our workday starts at 9 am and often extends into the night.”
Hundreds of ASHA workers protested in the summer of 2024, demanding an increase in their salaries and incentives. Photo: By arrangement.
She adds that despite protesting several times including at Delhi’s Jantar Mantar on November 29, 2024, their salaries and working conditions have not changed.
There are an estimated 20130 ASHA workers in Punjab. In Patiala alone, there are 165 ASHA workers like Santosh.
They face significant financial strain, spending out of pocket for transportation and other expenses. Santosh’s family urges her to quit due to the meagre pay, but her sense of duty keeps her going.
Anjana explains, “We earn Rs 2,500 as a base salary, and even with incentives, I make around Rs 4,500 a month. It’s nowhere near enough to cover household expenses, especially with the rising costs of essentials.”
Limited resources, low wages, and inadequate training hinder their effectiveness. Strengthening their capacity with mental health education and timely incentives is essential to achieve holistic TB care and recovery.
“The government should understand the work we do and the risks we take,” she says. “Delays in updating records and distributing incentives only make our jobs harder.”
Anjana, who has been an ASHA worker for almost 10 years now, agrees. “We get 50 paise per iodine test sample,” she says. An iodine test supports TB care by checking for nutritional deficiencies, thyroid issues caused by TB medicines, and overall metabolism in TB patients.
She highlights technology as a major issue. “In 2024, I didn’t receive any incentives because the cases hadn’t been updated online. We love helping people, especially the poor, but how can we sustain our families on such low pay?” she asks. “Sometimes it feels like the system doesn’t value our lives.”
“If a patient discontinues the treatment, succumbs to the disease, or records are not updated promptly, we lose our incentives. It’s disheartening,” Rani says.
‘We don’t even get basic safety gear like masks and gloves. Many of us work in congested areas where TB spreads easily’. Photo: By arrangement.
In 2020, Anjana contracted TB while working and was bedridden for two months. “I even went into depression. It took me six months of medication to recover. We don’t even get basic safety gear like masks and gloves. Many of us work in congested areas where TB spreads easily,” she says.
Adding to their challenges is the stigma associated with TB.
Anjana shared that at least three to four of her colleagues have been diagnosed with TB. “When I was diagnosed in 2020, it wasn’t just about recovering physically,” she recalls. “The stigma I faced was immense. Even now, when we approach families for TB screening, they often hide their symptoms or refuse treatment because they fear being ostracised.”
These workers claim that they don’t even get the basic safety measures like face masks and gloves while visiting such patients. “We’re expected to work in high-risk environments without any protection. We are told to use gloves or masks while dealing with TB patients but are not being provided with any such measures. It’s not just unfair; it’s dangerous.”
The National Strategic Plan for TB Elimination has ambitious targets, but without adequately supporting frontline workers, these goals may remain out of reach.
“We try our best to counsel patients,” Rani says, “but proper training would make a world of difference. Right now, we’re doing it based on our experiences. Imagine how much more effective we could be if we were given the tools we need.”
“We love our work,” Anjana says, “but love doesn’t pay the bills. It doesn’t protect us from disease. And it doesn’t make up for the sacrifices we’ve made.”
Note: This story was supported by The National TB and Mental Health Media Fellowship by Survivors Against TB. Read the first story here.
