About 45% of households with tuberculosis patients suffered catastrophic costs – defined here as expenditure that is more than 20% of annual household income, a new study published this week in the journal Global Health Research and Policy showed. The poorest households, and those who are hospitalised were most likely to suffer these catastrophic costs.
The study was conducted by the Indian Council of Medical Research’s National Institute of Epidemiology – ICMR-NIE. Jeyashree Kathiresan, the chief investigator and scientist with National Institute of Epidemiology, said while other studies – such as this and this – had also estimated out-of-pocket expenditure in TB care, their study has a nationally representative estimate. She added that the study has also been done after key strategies were implemented for TB diagnosis and care such as active case-finding and Nikshay Poshan Yojana, where a patient is supposed to get Rs 1,000 a month as nutrition support for the duration of treatment, among others.
“Our key finding is that households continue to experience catastrophic TB costs as of 2022 and with the newer incentives and schemes coming up, this provides a baseline to measure the effectiveness of these schemes in the future,” said Kathiresan, in an email interview. Overall, 1,407 patients in 11 states and Union territories were interviewed at home between 2022 and 2023.
The median costs experienced by TB patients for their treatment was $386.1 (more than Rs 32,000) – with the lowest being $130.8 (around Rs 11,000) and the highest going up to $876.9 (more than Rs 74,000).
The lack of nutrition and the risk of contracting TB are interrelated, research found, as IndiaSpend reported in October 2022. The lack of nutrition makes a person more susceptible to TB, while having TB increases the chance of malnutrition. Malnourished patients also find it harder to recover from TB.
More indirect costs
About two-thirds of these expenses were driven by indirect costs due to loss of productivity – that is, the loss of income due to TB when compared to pre-illness incomes. Indirect costs rose because many TB patients were forced to take lesser paying jobs, and were in the unorganised sector with no benefits such as paid leave, or employer-offered insurance, the study said. In fact, only 55.9% of the TB patients studied were actively employed and 33.6% were the primary income earners in their families.
“I would still say we haven't been able to capture the entire loss of productivity because we estimated only costs till declaration of treatment outcome,” said Kathiresan. “Our qualitative study suggests that the loss of productivity and income extends well beyond treatment outcome with some persons never being able to resume their pre TB levels of productivity.”
Around 12% of these patients incurred “coping costs” – which refers to desperate coping measures to cover the expenses such as costs of high interest loans, or loss incurred due to sale of assets and dissolution of savings.
Family affected by TB
A considerable amount is spent by TB patients even before the diagnosis, especially by the 60% of presumptive TB patients who go to the private sector as the first point of care, the study said.
In 2021, after several months of sickness, Nitin, a 24-year-old Mumbai resident was diagnosed with pulmonary TB in a private hospital. (His name has been changed to protect his privacy.)
“I ended up spending two weeks in the hospital. My father, who drives a rickshaw, was home without work then because of the lockdown. We spent around Rs 72,000 just on hospital stay apart from diagnostics such as CT-scan, X-ray and blood tests ,” said Nitin.
Though he was diagnosed with TB in the hospital, the treatment did not help at first. “I was vomiting non stop, and was losing weight rapidly. I shrank to 30 kg. I decided to shift to a government hospital which then shifted me to TB hospital in Sewri,” says Nitin.
In the municipality-run Sewri TB hospital, where Nitin was admitted for more than two months, the doctors realised that the first-line drug rifampicin was hurting his liver, and switched to streptomycin injections, thrice a week. He had to pay Rs 200 each time to a local doctor to just administer the injection. Nitin was now better, but he spent about Rs 2 lakh, despite availing free treatment under the government’s National Tuberculosis Elimination Programme, a public health initiative that aims to “end TB by 2025”. The programme provides free of cost, TB diagnosis and treatment services across the country.
Later, his sister-in-law got abdominal TB for which their family spent another Rs 1.5 lakh. Just this month, her two-year-old has been diagnosed with TB and her treatment will begin soon.
Hospitalisation costs most
The study said that persons with TB who were hospitalised (18.3%) spent a median amount of about Rs 74,000 ($882.3) as opposed to about Rs 27,000 ($317.5) spent by those who were never hospitalised.
“In the public health system, we do not have adequate inpatient care facilities in India for TB. The hospitals are worried that the disease will spread to other patients,” said Madhavi Bhargava, Professor in the Department of Community Medicine, Yenepoya Medical College, Mangaluru. “So the TB patients who need hospitalisation are often admitted in private hospitals,” she said.
Bhargava is the co-principal investigator of the RATIONS trial in Jharkhand, which showed that nutrition support helped reduce TB incidence by nearly 40-50% in household members, and lowered mortality rate among patients.
She added that the common problems for which TB patients require hospitalisation include low oxygen saturation, low blood pressure, severe undernutrition which requires nutrition care, severe anaemia, hemoptysis (excessive blood in sputum) and adverse effects of TB medicines.
Meera Yadav, who is a part of the Global Coalition of TB advocates, often fields calls from patients who need admission in hospitals to handle the side effects of anti-TB medicines itself. “Patients can have vision loss or hearing loss, for which they often seek private treatment. I know of a woman who has spine TB and suffered severe neuropathy in her leg. She is undergoing extensive physiotherapy to even walk.”
The cost of TB treatment also increases among those with drug-resistant tuberculosis, those with HIV and diabetes, the study found.
Kathiresan said that they have recommended strengthening these components – by strengthening public-private partnerships, ensuring point-of-care molecular tests for speedy diagnosis, and strengthening the screening and treatment of comorbidities.
Policy matters
Last year, the National Institute of Epidemiology published a study on differentiated care for TB patients. This means that patients should be diagnosed early and triaged to identify those who are at high risk of poor outcomes and provided care in the hospital if necessary.
Undernourished TB patients are especially at high risk, said Gajanan Phutke, a physician at Jan Swasthya Sahyog, a rural hospital in Bilaspur district, Chhattisgarh.
“Managing undernourished patients (with a body mass index under 16) is like managing a patient in the ICU and needs specialised nursing care too. They need to be checked for electrolyte imbalance, hypothermia, hypoglycemia, and may need blood transfusion and non-invasive ventilation. They have a very high mortality rate,” said Phutke, adding that such facilities should be available at district hospitals or even at community healthcare centres in high endemic areas.
There is a need to understand the diverse conditions under which TB diagnosis and care are being offered, Kathiresan said. “While national strategies loom large, we need strategies that adapt well to local challenges,” she said.
The United Nations Sustainable Development Goals for health include ending the TB epidemic by 2030. In terms of targets, this means a 90% reduction in the number of TB deaths and an 80% reduction in the new cases per 100,000 population per year, as against the number of deaths and new cases in 2015, as IndiaSpend reported in June 2024.
India aims to achieve this UN Sustainable Development Goal by 2025, that is, five years ahead of the global target. India’s containment of TB is more or less on par with the 2% fall in the incidence rate globally, IndiaSpend reported in May 2023. However, the decline is well below the 10% drop the World Health Organization had targeted to be achieved by 2025, and the 17% decline projected for the following decade, to end TB by 2035.
IndiaSpend reached out to Urvashi Singh, deputy-director general of the Central TB Division for comment on the study’s findings. We will update this story when we receive a response.
This article first appeared on IndiaSpend, a data-driven and public-interest journalism non-profit.
