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Despite the setbacks during the pandemic, the National TB Elimination Programme has made long strides in addressing tuberculosis in the country. The programme remains a basket of interventions focusing on detection, treatment, and system-centric models to ensure adherence to the regimen. While these are critical interventions to identify, track and treat patients effectively, they cannot address the immense challenges faced by the patients and their communities, especially those that pertain to improving patients’ capacities to complete treatment and actively reducing the rates of the social spread of the disease.
Not to say that the programme does not recognize the patient-centred challenges. However, the ongoing efforts have not been effective enough to meet the challenges because they do not place the patient at the centre of TB care and have a limited understanding of the patient’s journey and experiences through TB care. So, what do I need as a TB patient? I need to know that my cough, which has lasted for more than two weeks, requires a sputum test, which I can get tested free-of-cost at my local primary health centre. If the disease debilitates me, I need economic support and adequate nutrition. If I have comorbidities, then I need help managing them. I need my community to not discriminate against me because of my disease and my family by my side supporting me emotionally to deal with the duration of treatment and side effects. I need timely information on every doubt that plagues me, and finally, I need my family not to be infected.
These are easier listed than achieved, though. Some of the continuing challenges that the patient faces have been collated from the literature and have been presented below:
How do we pivot to a patient-centric TB care model?
This would require a foundational understanding of patients' challenges and the moral nature of support that would enable them to overcome those challenges. Radically new pathways to solving the challenge of TB may include exploring the chain of cough and respiratory clinics; institutional mechanisms for ensuring multi-sectoral actions for the mapped TB patients; conditional loans that support patient and family needs through treatment such that they incentivize progress; family-centric approaches; patients as catalysts for change (the national programme is currently scaling this); engaging the appropriate community collectives to support and destigmatize the disease and connecting migrants with app-based information systems and services.
Primary health care can be truly comprehensive when people are at the centre of its design. This World TB Day, let us pivot to patient-centric TB care!
is a Public Health Specialist with 28 years of subject experience in maternal and child health, nutrition, TB, infectious diseases and health system strengthening. She has international experience in program planning, design and evaluation design and has led large scale qualitative evaluations/analysis of maternal child survival and TB/HIV programs in Southeast Asia, Asia and Africa...