‘TB is a simple, yet complex, disease impacting a person’s physical and mental health’
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Rani had had a cough for over 10 days. Cough syrups and antibiotics had not made her feel any better. Her doctor advised her to test for Tuberculosis (TB). A shocked Rani reluctantly gave her sputum sample for testing, which confirmed that it was drug-sensitive TB.
Her doctor assured her that TB was curable and advised Rani to eat a protein-rich diet, test for diabetes and HIV and get her family tested for TB. Rani informed her supervisor at work, who gave her time off work. She began a medicine regimen every day until she was cured. Later, she met several TB survivors who had inspired her, and she also chose to speak about her own TB experience.
Every segment must work
Rani’s journey is what the ideal care pathway for TB care can and ought to look like in India. But for Rani to have this seamless experience, the complex machinery that works behind the scenes must be efficient. Every piece has to be in place, as in the case of Rani, even one missing element could have changed the course of her life.
What if her doctor had not suggested that she test for TB? She might have gone from one doctor to another awaiting diagnosis. She could have been too terrified to inform her family — when she did, they blamed her and were unwilling to begin any preventive therapy. Rani’s supervisor was understanding, but what if the person had turned hostile and fired her?
Rani could have also stopped taking her medicines when she developed side effects. The medicines were in short supply, so she would have had to travel over 20 kilometres every few days to replenish the supply. As this was strenuous, she may have had to approach a local pharmacy, but this would have mean running out of money soon. Rani could have been shunned by her neighbours, or she may have been malnourished, an elderly person or had a disability, all of which could have worsened her TB experience.
TB is a simple, yet complex, disease impacting a person’s physical and mental health. Stigma, loneliness and self-blame are common factors that people with TB face and experience. TB is a disease that dismantles social networks and disrupts economic progress, but cannot be cured by medicines alone, however essential. This is the single biggest lesson that TB survivors have taught the world.
At a macro level, there are issues about TB. Despite it being an airborne disease, there is a larger problem of insularity and persistent apathy, driven by the notion that it is a disease of the poor. Those of us who work deeply with TB care, know this well. There are too few of us and inadequate to tackle the scale of the crisis. How do we get everyone to care about TB and convince them that they have a stake in this fight?
What is needed
Most critical in all this is a resilient public health system, with dedicated human resources in place, an uninterrupted supply of commodities and drugs and the ability to transition from ‘one-size-fits-all’ care to person-centred care that is responsive to clinical, social and economic vulnerabilities. We need well-trained and compensated health workers to deliver care, which includes treatment literacy and psychosocial support (underestimated but critical). We need empowered communities, that are led by TB survivors, to advocate on behalf of people with TB and tackle discrimination. We need feedback loops to improve the quality of care. We need newer tools for point-of-care testing. Within the private health-care system, better quality of care is key. To prevent TB, we need to improve airborne infection control, improve nutritional status and make available an effective vaccine for all.
Our responsibilities do not end at cure. We must understand the needs of TB survivors and provide follow-up care. All of this must be backed by gender-responsive, data-driven planning and decision-making.
What needs to be done
The most efficient health sector cannot end TB by itself. We need multisectoral action. We need more Champions who are able to say they had TB and motivate other people with TB. TB needs to be integrated within social and private insurance schemes. Our elected representatives must include TB on their agendas. We need an ‘aware media’ which is willing to spotlight TB.
Corporate India must prioritise TB control and be more open to investing corporate social responsibility resources. In the long run, we need viable social business models for TB care that transcend public-private partnerships.
In India, many of these aspects are part of the National Strategic Plan and operational to varying degrees. But if we are serious about ending TB, we cannot afford to pick and choose. Every single element is essential and can directly determine whether Rani, and others like her, are able to get a quick diagnosis and get cured. Every actor has a specific role in this ecosystem and must work in synergy to dismantle apathy. We will not reduce suffering and deaths due to TB if we do not build this tapestry of system and community-level actions that firmly place the needs of people with TB in the front and centre.
Dr. Ramya Ananthakrishnan is the Director of the Resource Group for Education and Advocacy for Community Health (REACH), a non-profit organisation working on tuberculosis for over 25 years. Anupama Srinivasan is Deputy Director, Resource Group for Education and Advocacy for Community Health (REACH) and a member of the 2024-25 India WomenLift Health cohort
Published – March 24, 2025 12:08 am IST