AJMER, Rajasthan: Ragina Rawat has worked in stone-crushing units since she was a teenager, first accompanying her parents, and then her in-laws, to lift stone debris at a factory in the Beawar industrial area in Rajasthan.
Rawat has a small frame and moves briskly. But two months ago, she started suffering from chest pain, breathlessness and a hacking cough. Even routine tasks began to feel like a struggle.
Having inhaled the dust produced by stone-crushing machines for 14 years, Rawat was already at risk of developing tuberculosis (TB), a bacterial infection which primarily attacks the lungs. Last year, this risk increased after her neighbour Kalu Singh, also a stone-crushing worker, was diagnosed with multi-drug resistant-TB (MDR-TB), a deadly form of the disease.
In March, the government announced that it plans to end TB by 2025 and tripled the funds behind the effort. But, as with many other policies, the gap between intention and outcome is large.
In 2017, recognising that many cases were not being diagnosed, the government put in place a policy of 'active case finding' (ACF)—this involved visiting people in communities already vulnerable to TB (such as workers in stone-crushing units) and systematically screening people close to TB and MDR-TB patients to detect the disease. This was in contrast to the earlier policy of 'passive case finding', where the patient was expected to go to the health institution for tests.
But ground visits to a block in Rajasthan that was a site for ACF pilots last year—the industrial area and slums in Beawar in Ajmer—show that poor management and inadequate infrastructure are depriving those who most need the intervention of its benefits.
The government's policy is to trace everyone in close contact with an MDR-TB patient and check them for symptoms of TB. In the case of Singh, who stays with 13 other family members, 'contact tracing' has not been done.
His daughter-in-law, Santosh Devi, had contracted TB in 2017, though the family is not sure whether it could be MDR-TB. Devi, a frail woman who covers her face with a veil, said that she had finished a course of drugs for regular TB two months ago, but was not better.
The government doctors in the Ajmer government TB hospital had advised Devi to get admitted in the hospital, she said. But Kailash, her husband, did not allow this because, he said, treatment in government hospitals was difficult.
"You wait there, but they pay you no attention. Finally, an attendant may put you on a glucose drip, but your family must stay awake all night asking that the drip is changed, or changing it themselves," he said.
The MDR-TB threat
India is battling a tuberculosis crisis, but the government still does not have an accurate estimate of how many Indians suffer from the disease.
In 2016, the World Health Organization (WHO) increased its estimate of new patients with TB in India to 2.8 million from 2.2 million in 2014. But a Lancet study that counted the amount of TB medicines sold in the private sector and then worked backwards to calculate how many were taking them estimated the number of Indians newly afflicted with TB that year at 3.6 million.
While TB can be cured by a combination chemotherapy drug regimen of six months, the emergence of MDR-TB is worrying policymakers.
The WHO estimates that more than 2.79 million Indians contracted TB in 2017, nearly a quarter of the new TB cases in the world, the highest share of any country. But officials at the Central TB division admit that only 1.8 million cases were notified. Nearly a million cases are still not notified every year, and are either undiagnosed, or inadequately diagnosed and treated.
And while TB can be cured by a combination chemotherapy drug regimen of six months, the emergence of MDR-TB is worrying policymakers.
WHO defines MDR-TB as a condition in which the two most powerful first-line anti-tubercular drugs are no longer effective. When someone with TB does not finish treatment, or if wrong or substandard drugs are prescribed, the bacteria can become resistant to the antibiotics. Drug-resistant TB has a much harsher, 24-month treatment regime which costs nearly 100 times more. It also has only half the rate of treatment success as drug-sensitive TB.
From passive to active
In its new National Strategic Plan on TB, announced last year, the government had identified 'passive case finding' as a major cause for TB cases going undiagnosed.The "Active TB Case Finding" campaign, launched last year, identified priority groups and those at risk because of "their reduced access to medical services and their underlying determinants of health".
As per India's Revised National TB Control Programme, 100% of the identified population would undergo "active case finding" in the next two years (from 0% in 2015). Trained health personnel would go door to door among these clinically or occupationally vulnerable population, and take vans equipped with X-ray machines to slums, and remote areas in tribal districts.
"We have been detecting 14-15 lakh cases in public facilities for the last few years, and the number is not going up. We need to know where the rest of the cases are," Dr R Rao, a public health specialist at the Ministry of Health and Family Welfare, told HuffPost India.
Active case finding, he said, was not an accepted strategy until 2-3 years ago because it was not thought to be cost-effective."But when a disease is reaching an epidemic level, interventions need to be different," he said.
In 2017, during the pilot phase, 55 million people were screened in 378 districts and 26,781 TB cases were diagnosed. Terming the 2017 ACF exercise a success, Rao said the ministry expected the efforts to be scaled up to 80 million screenings across 550 districts by state health departments in 2018-19.
"We have now left it to states to carry it out as a routine activity. It is an effective way to reach missed patients and prevent new infections," said Dr Rao.
In Rajasthan, where the Aravalli mountain range cuts through, more than 2.05 million people worked directly in stone quarries in 2016-17 and several thousands are engaged in stone-crushing operations, categorized as socially and occupationally vulnerable to TB.
The state will vote in Assembly elections this week. The Jan Swasthya Abhiyan, a public health campaign, has criticised the ruling party Bharatiya Janata Party's election manifesto for not treating health as a priority and failing to increase health spending beyond the current 1% of the state GDP.
In 2017, Ajmer's Beawar, where many stone-crushing units are located, was one of the high-risk blocks selected for ACF.
Five teams collected 900 samples for sputum examination in Beawar but not even one of these tested positive for TB.
Over one week last December, five teams of three members each—a TB supervisor, an auxiliary midwife nurse and a counsellor—carried out a door-to-door campaign in Beawar. They collected 900 samples for sputum examination, the most basic test for TB, but not even one of these tested positive for TB.
In the entire district of Ajmer, 15,000 samples were collected, but only 10 were positive.
Dr Shibu Balakrishnan, a WHO consultant working on India's TB Control Programme, called this "an unlikely result". ACF, he said, required very careful management over several stages, which may not have been done.
"You have to scientifically map those with a TB infection who could be source of further infection, train staff, then carefully plan visits when people are likely to be home and not at their workplace, providing support to people to go get tested, ensuring the quality of microscopy such as how many technicians are there, are they able to examine the samples well or just perfunctorily," said Dr Balakrishnan.
In Beawar, some of the teams did not even visit the selected areas.
"One of the five teams simply took ward lists from the counselor and marked families as 'contacted as part of ACF' without visiting any family in the area," said a health worker who was part of the ACF on condition of anonymity.
The health workers also had to deal with the reluctance of those affected to seek treatment.
Santosh Kumari, a TB counsellor who carried out ACF in Beawar. said she found it difficult to convince those who showed symptoms such as fever and cough even to give a sputum sample or visit a health facility.
Dr Shekhar Sharma, the district TB officer who supervised ACF in the block, said he had received "no facilities, no directions" from the Rajasthan state TB cell about the ACF.
"Were we the subject of an experiment?" he asked. "We got no prior information, and were asked to do it without clarity on the purpose of doing it," he said.
The Beawar district TB hospital is in a small, dilapidated building. In the monsoon, it becomes unusable as water leaks through the roof and floods the building. In 2016, thieves broke into the hospital and stole the air-conditioner and chairs.
Dr Sharma said that over the past three years, he had written dozens of letters to officials in Jaipur to get repairs costing Rs 48 lakh done, but to no avail.
The Beawar hospital gets 4,000 patients a year seeking diagnosis, said Sharma, but it has a sanctioned strength of just nine staff members. The hospital has microscopy facility, but the X-ray machine to carry out radiological examinations had not worked in two years.
In March this year, as part of augmenting diagnostics facilities under the new end TB strategy, the Beawar TB hospital got a new Cartridge Based-Nucleic Acid Amplification Test(CBNAAT or Genexpert) in March. The molecular diagnostics technology can detect resistance of the bacteria to Rifampicin, one of the two major drugs to cure TB, within two hours. But the machine remained unopened for six months, until August, as there was no air-conditioner in the hospital to maintain the temperature to run it effectively.
State TB Officer Dr Dileep Thala admitted that the yield from ACF was "too low", even in areas that had a large vulnerable population such as miners and stone-crushing workers. However, he chalks this up to the people already being aware of TB risks.
The ACF pilots last year, said Thala, were part of a training exercise.
"Now districts can organise ACF by themselves in future," he said.
In Beawar, after the dismal results from last year, the hospital staff has discontinued ACF.
Meanwhile, Rawat has now spent her wages for 20 days on seven consultations at a private clinic.
"I asked the doctor, 'please diagnose me, I cannot afford Rs 200 on every visit'," said Rawat. But the doctor has not even asked her to undergo tests to rule out TB.
Two months on, Rawat is continuing to lose weight and her condition is deteriorating. "We eat kachcha ghee. Could that be stuck in my lungs?" she asks anxiously.
Anumeha Yadav is an independent journalist who has received the REACH National Media Fellowship on Tuberculosis.