From ‘incompatible with life’ to reclaiming life, outlook on TB is changing

Dec 2018 Biraj Swain Photo credit:

From ‘incompatible with life’ to reclaiming life, outlook on TB is changing

Tuberculosis treatment is moving from germ theory to patients and their world

Mohsin (name changed) is an auto driver. He contracted tuberculosis (TB) in 2016. He lives near Cox Town health centre in Bangalore Urban district. He is lucky: This health centre also has a designated TB unit. He reported his enduring cough in time. He was tested and treatment was initiated. He adhered to the complete treatment protocol. He was cured. He felt blessed!

November 2018: Mohsin does not feel as blessed! He has been infected with TB again. Not relapse, but re-infected. This time his 15-year-old son has contracted it too. He is back in the TB unit at the health centre. He is also diabetic, which makes him extra-vulnerable and his treatment complex. Hope slips away even as the community health worker is talking up, trying to instill hope, faith and complete cure possibility. Mohsin is not an exception.

Pooja, a multi-drug resistant (MDR) TB patient, who was cured, has gone on record in the film Two Countries, Two Choices to talk about the discrimination she faced during the treatment. And the people discriminating were not just neighbours and friends but own family members, including her father.

In the Satyamev Jayate episode on TB, actor-presenter Amir Khan has spoken to many TB patients, doctors and families. One case that stood out was of Prathamesh of ICICI Bank. He chronicles the discrimination he faced, the impoverishing and debilitating cost of treatment and how his company-financed and family-financed insurance covers were not enough. Despite the medical insurance policy, he spent an additional Rs 20-25 lakh in the four years of his treatment.

TB is the perfect assassin, says Zarir Udwadia, one of the most influential voices on TB globally and credited for identifying Extensively Drug-Resistant TB and the only Indian to be on the World Health Organization TB Guidelines Group.

It is a disease that doesn’t need a vector, like malaria does, or the sexual intimacy of AIDS to spread. With poverty, over-crowded habitations, malnutrition, HIV and diabetes co-infections and tobacco addiction, India is the go-to destination for TB, he explains.

India contributes 27 per cent of the global TB burden, according to WHO’s Global TB Report 2017. The country recorded 423,000 TB deaths of a total 1.67 million globally last year. In cases of MDR TB, the toll was 147,000, among 601,000 worldwide. In HIV-TB co-morbidity cases, the global toll in 2017 was 10.3 lakhs whereas Indian death toll was 87,000. The country had 2.79 million of the world’s 10.04 million people afflicted by TB.

India has set an even more ambitious deadline to eliminate TB, ie 2025, a whole ten years ahead of the global deadline of 2035.

While the preparedness of India to combat TB in terms of drugs, diagnostics and counseling leaves a lot to be desired, the Indian government’s TB strategy is recognising the social nature of the disease and allocating concrete budgets to address that. And that gives hope!

Loss of appetite, extreme weight-loss is a common refrain across all three cases. In fact in case of MDR TB, some patients, who lack access to nutritious food during treatment, the body-mass index (BMI) falls below 13. When an adult’s BMI falls to less than 13, doctors term it “incompatible with life”. That’s right, it is a clinical expression, though sounds more literary.

Iconic English author Charles Dickens has written about TB in his novels. A century ago TB was everywhere. It had an evocative name—the White Plague—because of the ashen complexion it caused. The more colloquial term was Consumption since it consumed the body with severe weight loss. It also consumed the will, the human spirit, the future of the patients and their families. A century later, the poor, who are mostly bearing the burden of TB are suffering from the same ‘consumption’.

The government’s attention to under-nutrition and other socio-economic determinants of the disease is a big change from the existing treatment approach, which has for long been germ-theory based, biomedical-focused. Indian policy on TB officially recognised the nutritional aspect of controlling the disease only in 2017, in the National Strategic Plan for TB. Rs 1,200 crore, or about a fifth of the budget in the plan, is earmarked for nutritional and social support for patients.

According to the government’s nutritional support scheme, TB patients across the country receive a nutritional support of Rs 500 per month via direct benefit transfer. To receive the money, patients are expected to enroll in the government’s Aadhaar-linked Nikshay programme.

The Wire reported recently that, some public health professionals feel that health policy in India should focus also on mitigating undernutrition in general, as undernutrition is itself a risk factor to contracting TB. But the National Strategic Plan for TB looks at providing nutrition only after a person has already contracted TB. A more holistic approach to nutrition would be a radical change in India’s approach to TB control.

Right now the definition of holistic patient-focussed approach seems to have expanded to nutrition only. Some states are even topping up the Rs 500 support. Chhatisgarh spends Rs 850 per patient per month while Kerala gives Rs 1,200.

Some are going beyond nutrition support. Karnataka Health Promotion Trust (KHPT), a leading non-profit in the health and social development space, in partnership with the state governent, has rolled out a comprehensive patient-centred, family-focused approach to TB treatment as part of TB Health Action Learning Initiative (THALI). They are pushing the envelope beyond just nutrition support.

It also undertakes comprehensive assessment of the socio-economic conditions of each patient so that they could be linked with other programmes like the Public Distribution System, Integrated Child Development Scheme, Ayushman Bharat, etc. As part of the socio-economic intervention, they are also initiating dialogues with local traders and entrepreneurs for livelihoods support and jobs for boosting the income of TB patients and their families.

This author witnessed intensive engagement of the state health machinery in building community structures to de-stigmatise the disease and create patients’ support groups, care-givers’ support groups. This is also to create awareness about free treatment and get the missing patients.

Prakash Kudur of KHPT says: “There is the additional complexity of the missing patients in case of TB. Missing patients are those who are either undiagnosed or detected but not reported by the national TB systems.

“It could be due to migration of the patient, non-reporting from the private sector, stigma and hiding by the patient and drop-out from the treatment regime. In 2017, out of the global TB infections of 10 million, 3.6 million went missing. This requires active patient identification and engagement with the community leaders and private sector.”

As Yogesh Jain of Jan Swasthya Sahayog told  the Wire, “The TB discourse has been hijacked by chest physicians. Treating just the TB bug is not enough. This will give us only optics as results. We need to have a clear focus to move away from the ‘germ theory’ in treating infectious diseases and start focusing on the patient in a more wholesome manner.” Recognising the socio-economic nature of the disease and acting on multi-pronged strategies is the first step to addressing that. Keeping the patients and their families, front and centre of the treatment protocol is the mantra, says Mohan HL of KHPT.

Allocating resources for nutritional support is a good move, but not enough. Karnataka’s move to identify patients’ needs and link them to multiple programmes and entitlements is a “nutrition plus” approach and it could be the future of TB treatment in India.

Artcile published – https://www.downtoearth.org.in/blog/health/from-incompatible-with-life-to-reclaiming-life-outlook-on-tb-is-changing-62438