A for Accountability and Audit for TB deaths is missing in #EndTB response

Shobha Shukla *

When TB is preventable and curable then why over 1.1 million people died of it worldwide in 2023 (as per the latest WHO Global TB Report 2024)? Even one TB death is a death too many. Most of these deaths took place in low- and middle-income countries. Unless we find what went wrong and what could have done better, how would we ever improve TB programmes in order to avert these untimely deaths?

A young woman of 19 years old died of TB in Delhi (India). When experts looked at the case, it became evident that it was a failure of the system. This girl was a poor migrant worker. Her father had died of TB. Her sister too had TB. They were seeking healthcare from the private sector and they fell through the cracks.

“Probably, they could not continue the treatment regularly … nobody was tracking them… or following up on them ... and by the time she was admitted in LRS Institute (now known as National Institute of Tuberculosis and Respiratory Diseases or NITRD), she had a very extensive bilateral disease and she ended up dying,” said Dr Soumya Swaminathan, Principal Advisor of National TB Elimination Programme, Ministry of Health and Family Welfare, Government of India. Dr Soumya earlier served as Chief Scientist of World Health Organization (WHO) and Director General of Indian Council of Medical Research (ICMR).

“At NITRD they had put her on the ventilator, they did everything possible but could not save her,” said Dr Swaminathan. She was speaking at a special WHO session at World Health Summit regional meeting.

A 19-years old girl died in India’s national capital Delhi, which has state-of-the-art TB and healthcare infrastructure in public sector too. She died of drug-sensitive TB (which means her TB bacteria was NOT resistant to any TB medicine). “Such cases are occurring everyday but are we paying attention to that? Are we learning lessons? Are we trying to improve the system?” asks Dr Swaminathan.

Despite being curable, TB is the deadliest infectious disease globally

TB is the deadliest infectious disease worldwide. It killed more people even during the COVID-19 pandemic in many high-burden TB settings. It mostly impacts the poorest of the poor and the most vulnerable. So, given the inequities and injustices that ail us globally, it becomes less visible to those who are among the privileged few.

India is home to the largest number of people with TB globally (2.8 million). WHO Global TB Report 2024 states that 323,200 TB deaths took place in India in 2023, which amounts to almost 900 TB deaths everyday.

A for Accountability and A for Audit of every TB death is a must

When governments united worldwide to reduce maternal mortality and adopted Millennium Development Goals (MDGs) in 2000, they delivered on it and maternal deaths declined significantly by 2015.

“Reducing maternal mortality had been among the important MDG goals. Governments and communities could deliver on it significantly through certain key interventions- like institutional deliveries and better antenatal and postnatal care, among others. To address the primary causes of maternal mortality, collectors of each district undertook a maternal death audits every month. For every maternal death which occurred, everybody had to sit together and understand and explain why that death was not preventable. Why cannot we have a similar approach to audit TB deaths?” asks Dr Soumya Swaminathan.

“I would suggest that a community medicine department or a public health department of a local medical college in that state be assigned this role to do TB audits. It should not be the TB programme itself doing TB death audit, but it should be presented with the analysis and reasons for TB deaths by those who are doing it,” said Dr Swaminathan.

Many countries have made significant progress in reducing TB deaths. But still case fatality rate (number of people who die among those who are diagnosed) is high – it hovers around 10%. For example, in India out of 2.55 million cases that were notified to the TB programme, TB deaths were 323,200 (13%) in 2023. TB death rates are higher for drug-resistant forms of TB.

“China has a TB death rate of 3 per 100,000 population. India has a TB death rate of 22 per 100,000 population,” points out Dr Swaminathan, calling for stronger action to save lives.

“This high mortality for a disease that is treatable is of concern. TB mostly affects people who are in the 25-55 age group, which is an important economically productive one. If we calculate the economic loss to the country because of TB deaths- with people in economically productive age group falling ill and some even dying of TB- then it could be a huge economic burden as well. If we add secondary costs, then it would be way more,” said Dr Swaminathan. “But more important than economic loss are those individuals who die of a preventable and treatable illness. We must do our best to understand the data and do proper analysis of TB deaths.”

Dr Swaminathan shared an example from Tamil Nadu, a southern Indian state where the state government has partnered with National Institute of Epidemiology (an institute of Indian Council of Medical Research) to audit TB deaths and help improve clinical management of TB patients to avert such deaths in future.

Dr Swaminathan reflected that people need to get the right care at the right time. They may have TB disease but they also have other conditions, such as severe malnourishment, high blood pressure, diabetes, other co-morbidities, or they come from such a poor background that they cannot access the care they need. TB-related stigma lurks even today which further jeopardises equitable access to care and services.

Alcoholism is another major risk factor for TB, she said. “I have been to hospital wards and seen how people become sick or non-adherent to therapy due to alcoholism.” If we can identify early on, other co-morbidities or conditions a person with TB has then we can perhaps try to tailor our care and services to help and support them finish their TB treatment.

She rued that “Very often hospitals refuse admission for TB patients for one reason or the other.” Hospitals must not refuse admission to needy TB patients. She advises that TB related hospital admission and care should be covered with Indian government health insurance scheme so that hospitals get compensated for admitting and caring for a severely ill person. Once a person is admitted in the hospital then the medical management can try to address specific needs, such as nutritional support, insulin for those with diabetes, help quitting alcoholism, among others.

In tribal areas of India, TB patients are more likely to have severe malnutrition and severe anaemia. “I have looked at death reports from the tribal districts of India.Young female patients of 21- 23 years of age have died of drug-sensitive TB with no underlying co-morbidities.” A sincere TB death audit can help us avert such tragedies in future.

Dr Swaminathan hopes that in the next National Strategic Plan to end TB of government of India, we would find these gaps that put people at risk of TB death and address them effectively. We also need to have a similar approach in other southeast Asian countries as well, she said. “Reducing TB mortality significantly can be achieved.”

Learnings must come from people on the ground

"Learnings must come from people on the ground, such as, district TB officers, treatment supervisors, laboratory supervisors, TB health visitors, ASHAs (India's voluntary female health workers formally called Accredited Social Health Activists), and of course the patients themselves - as they are the ones who can actually tell you what works well and what does not. We have to make it a point to have a forum where their voices are heard so that we can improve the way in which the programme is designed," suggests Dr Swaminathan.

In India, Humana People to People India developed a model to care for those among the urban poor in 4 major cities of India. Humana's trained and supported team of frontline healthcare workers reached out regularly to homeless and migrant people in Delhi, Hyderabad, Kolkata and peri-urban Mumbai, screened people for TB, supported those with TB symptoms to get an X-Ray and TB test done and seek treatment from the nearest government-run TB centre.

Humana's team followed up with each patient every day, and addressed their needs and problems which they encountered during the therapy. For example, encouraging them to stay away from alcohol, providing them nutritional and counselling support, helping those who were too weak to 'even lift a glass or walk' to reach healthcare centres, coordinate with TB healthcare workers regarding treatment followup and help them get cured.

Humana's model encourages people who were at heightened TB risk to take charge of their own lives, and seek healthcare and social support services (such as, nutritional or monetary support provided by the government of India or shelters for homeless).

Supporting those who are at highest TB risk- especially those who live in most marginalised and vulnerable situations- so that they can get diagnosed early, seek effective treatment, and access support - so that they can finish their TB therapy, is vital if we are to end TB. Models like those developed by Humana People to People India (and proven to work) must be implemented in all high TB burden settings.

Despite progress, a lot more needs to be done with urgency

Dr Vineet Bhatia, World Health Organization (WHO) Regional Advisor for TB for South-East Asian region, emphasises that access to TB services is critical towards achieving universal health coverage. "Social protection measures such as cash transfers and nutritional support are essential for mitigating the social and economic impacts of TB. TB should be prioritised in national budgets, including through innovative financing mechanisms, such as social impact bonds and public private partnerships."

Dr Bhatia stresses upon the importance of meaningful community engagement and empowerment which should guide the designing, implementation and monitoring of TB programmes.

Dr Bhatia enumerated several examples where countries in South-East Asian region have demonstrated leadership and political will to end TB. Bangladesh hosted WHO's 1st Global Forum on Advancing Multisectoral and Multistakeholder Engagement and Accountability to End TB in June 2024, India has made a foundational shift based on science and evidence to find all TB by screening everyone among high risk people and offering upfront molecular test diagnosis and linkage to care, as part of its 100 Days campaign and extending it to all districts nationwide.

Indonesia's Presidential Decree on TB aims to implement a comprehensive strategy towards ending TB. Maldives has rolled out TB-free initiative. Myanmar was the only high TB burden country in South-East Asian region to achieve 2020 milestones for TB incidence decline. Nepal's TB free initiative at Palika-level aims at actively engaging subnational level systems in TB programmes. Thailand has made significant efforts to improve coverage for TB services under its commitment to achieve universal health coverage. Timor-Leste initiated a Partners' Pledge to end TB led by the Prime Minister of Timor-Leste for a multi-sectoral approach.

South-East Asia region of the WHO is home to around 5 million people with TB (45% of all people with TB worldwide). The region also accounted 600,000 TB deaths - more than half of all TB deaths globally in 2023.

"While a lot is being done a lot more needs to be done and with urgency" rightly said Dr Bhatia. "It is time to transform all our commitments and political declarations into actions. We need to accelerate efforts to achieve the global TB goals."