“Anyone who can run a TB program can run the whole of health,” said the President of the Health Care Foundation of Greater Kansas City, US, in 2018 as we sat down to have coffee. That is so true! I can state this from personal experience, having planned, implemented and/or provided technical expertise to the first TB control program of Pakistan in Sindh province from 1999-2006 based on the TB-DOTS Strategy, while working with the provincial government and WHO. Whilst recognizing world leaders who formulated the strategy and other related TB policies, we observe a galaxy of TB leaders like Karel Styblo, Arata Kochi, Mario Raviglione and Donald Enarson, who constituted the best of the best in global health policymakers.
As we observe World TB Day 2024 with the theme “Yes! We can end TB” when in 2022, an estimated 10.6 million people fell ill with tuberculosis (TB) worldwide including 5.8 million men, 3.5 million women and 1.3 million children and Pakistan over 0.6 million people acquired TB. Here we need to go beyond statistics, appreciate the pain of people with TB and be cognizant of a crucial gap in TB program implementation. Healthcare professionals and other caregivers often forget to pay adequate attention to persons who need it the most. These are neither governmental leaders, influential persons nor donors, but the people actually affected by TB. Paradoxically, these are the very people ignored the most and blamed for getting lost in follow-up, lack of treatment adherence or development of drug resistance, whereas it is the overall system, which is more to blame due to its limitations.
People with weakened immune systems have a much greater risk of getting the disease, while those living with HIV are about 16 times more likely to develop active TB.
Research studies in Pakistan have found that while the behaviour of the physicians towards people affected by TB is generally alright, the paramedical and support staff are generally rude intensifying the stigma attached to TB, which in turn can significantly impede case finding and pose an added threat to local communities.
Furthermore, while a quarter of the world’s population is infected with tuberculosis (TB) bacteria, Pakistan, being a high TB burden country, is hypothesized to have latent TB in over a third of its population. Thus people with weakened immune systems have a much greater risk of getting the disease, while those living with HIV are about 16 times more likely to develop active TB. This highlights the need for TB preventive treatment in eligible categories using appropriate treatment regimens. In addition, activities focused on increasing awareness, education and community involvement are critical in promoting the acceptability of interventions in these persons.
Consider that TB usually starts with symptoms like low fever, tiredness and cough, and may progress to coughing blood or mucus, chest pain, pain with breathing or coughing, high fever, chills, night sweats, loss of appetite and weight loss. Add to these, the side effects of chemotherapy, particularly in drug-resistant TB and life becomes a living hell already.
Not surprisingly, research evidence suggests that half of persons with TB in Pakistan also suffer from depression. These findings warrant integrated models to effectively prevent, screen and treat both conditions, in line with WHO’s End TB Strategy, to bridge gaps in mental health services at all levels. Depression can decrease the immunological response, increase vulnerability to TB and delay recovery while adversely affecting the person’s quality of life and capacity to perform routine activities. TB Reach projects in Pakistan have demonstrated the utility of video counselling by psychologists and referral to qualified psychiatrists, where required, to effectively cope with both co-morbidities. This simple intervention can improve the quality of life, while any complaint can be forwarded to a resource person through an app.
The United Nations high-level meeting on TB in 2018 called for multisectoral and intersectoral engagement in the fight against the disease, while developing integrated, people-centred, community-based and gender-responsive health services based on human rights. Since then WHO and the Stop TB Partnership have fostered the process. A multisectoral accountability framework for TB control has already been established in the Badin district with good results.
Meanwhile, the International Union Against TB and Lung Disease has catalyzed community involvement through its Community Advisory Panels with voluntarily engaged members of affected communities and civil society who advise on how best to address the needs of TB-affected persons by overcoming barriers in accessing quality TB services while ensuring human rights and gender equity. Such activities are flourishing in Pakistan to catalyze the work of provincial TB control programs. A group of senior lawyers has been trained with support from the Pakistan Bar Council to highlight the rights dimension in TB care and address the grievances of TB-affected communities.
TB affects women disproportionately as although overall knowledge regarding TB is extremely deficient in Pakistan in both sexes, it is much more so in rural females, who are also constrained in visiting health facilities to access TB care. It is therefore imperative to view all our plans, policies and guidelines with a gender and human rights lens, before their endorsement by the relevant authorities. The Stop TB Partnership has supported Community Rights and Gender Assessments in several countries to review the extent to which gender differences shape TB vulnerabilities in different settings. The main donors in End-TB, namely The Global Fund and USAID both have a clear commitment to promote the protection of human rights and gender equality in the TB context.
Lastly, the onslaught of technological advances in TB diagnostic and treatment care must make processes more user-friendly in the best interest of the TB-affected communities. Unless people are kept at the heart of all TB care efforts, we may not witness TB elimination from Pakistan during our lifetimes.
The writer is a senior global health and public policy specialist and Editor in Chief of Public Health Action.