Summary
Commentary by Karuna Devi Sagili
One of the most powerful weapons we can use against TB is social welfare – Robert Koch (1890)
During my Sabbatical break in mid-2023 which lasted for a year, I took time to reflect on my work in TB care and prevention. My first research study on TB was to conduct a Knowledge, Attitudes, and Practices (KAP) Survey (2012-13) across 30 districts in India. This was not only my first in TB, but also in public health. As a life science researcher working in the lab, I was quite excited to learn about public health, however, it didn’t take me long to realize I was involved in public health long before when I was volunteering at an HIV clinic. Experience in engaging with people with HIV/AIDS through counselling and hearing their stories for many years has given me deep insights into the social determinants of health. I had learnt that providing nutrition support and counseling, sometimes only listening, had a tremendous impact on an individual’s health. This inspired me to write my first-ever concept note on social security for individuals with TB and their families. A young researcher then, I was enthusiastic to present my concept of conducting a social assessment and facilitating/providing needs-based support, including financial, nutritional, employment, child support, and counseling. I felt it necessary to have a holistic approach. My concept was summarily shot down. I was very disappointed.
Robert Koch’s words 135 years ago about social welfare being the ‘most powerful weapon’ keep echoing in my ears, almost every day. Knowledge does not always translate into actions, which is also the case with TB. The majority of people who develop TB are poor and undernourished. Their children drop out of school. They experience stigma and discrimination. Some lose their jobs, and many are forced to stop working due to ill health. These are known facts since time immemorial, supported by robust evidence, yet our actions/interventions/strategies to address them fall woefully short. TB programs were mostly working with a medical lens and were unable to shift gears to biosocial approaches. Many TB advocates and activists have therefore repeatedly reminded TB programs to learn from HIV programs, which have already changed their gear. Our solace is that over the last decade, change has begun, gradual but steady. One by one, social areas like nutrition, counseling were being integrated into national TB programs. Moving an inch closer to social protection.
So, what is ‘Social Protection’? The International Labour Organisation (ILO) uses this definition ‘the set of policies and corresponding programmes designed to prevent and reduce poverty, vulnerability and social exclusion throughout the life course’ (1) .
After years of advocacy efforts, WHO and ILO have released ‘Guidance for social protection of individuals affected by TB’ 2 in 2024. This is a breakthrough for TB, moving into a biosocial approach. However, how this guidance will be implemented by the countries is a question for later. In the words of a TB survivor (3), “Social protection is the ground on which the TB treatment can stand tall. If the ground is shaky, your medical treatment will fall apart’’. These are powerful words of wisdom and experience! According to her, social protection not only includes big bucket stuff like nutrition support, but also those small emotional issues, which may seem insignificant to the providers but need assurance for the individual to move forward. Issues like marriage and family life could also be affected. I met women who were sent away to their parents’ house when they got diagnosed with TB. Some of them felt it was safe for their children; however, no one told them that once they start the treatment, in less than a month, they will be non-infectious. In the KAP surveys I conducted, we had a question about marrying off a son or a daughter to a person who had TB. When I piloted these questions on some TB healthcare providers, I was expecting that everyone would say ‘yes’, but to my surprise, quite a few said ‘no’. If a medical doctor who is working in TB (meaning, he knows everything about TB, so it’s not a lack of awareness) is not willing, what could be the reason? Is it stigma or is it a choice? If a choice, why or why not? A woman in the community to whom I asked this same question was more accommodating, she said “We have to take care of everyone. So what if that girl had TB, now she doesn’t have it, so I have no problem to make her my daughter-in-law”.
Combining the two perspectives on social protection, we can categorise three levels of protection:
– Individual level (example: include needs-assessment based nutrition, employment, financial, counselling, and education for children, non- stigmatising family support)
– Community level (example: stigma-free, inclusive employment, social insurance, support network)
– Government level (example: Development and implementation of TB inclusive policies across ministries/departments, legal provisions, legislative provisions, social benefits)
National TB programs often don’t have the capacity and the mandate to adopt a biosocial approach. Hence multi-sectoral approach or a whole-of-government approach takes the front seat. This requires a strong political will to eliminate the social risk factors that sustain TB – poverty and undernutrition. Countries like India have taken the provision of nutrition to a new level – crowd sourcing with a dual agenda of nutrition provision and stigma reduction. While this is a great innovation, the sustainability and the long-term impacts on stigma are not clearly understood at the moment. The ownership of government at all levels, ensuring sustainability, would be the ultimate social protection for TB-affected individuals and their families. In the recent wake of reducing donor funding, the role of government has become more prominent. Though it is a tough time, it is also the right time to implore the governments to own the responsibility of social protection for TB-affected individuals (not excluding their families). Many people working in TB projects have lost jobs, which could have serious implications for the program delivery, however, it has surely revealed that workers in the development sector have no social protection, especially the field workers and small-scale organisations. This is an issue that needs independent attention, so I want to close this here, without losing our focus on TB-affected individuals.
References
1. World social protection report 2020–22: social protection at the crossroads ‒ in pursuit of a better future. Geneva:
International Labour Organization; 2021 (https://www.ilo.org/wcmsp5/groups/public/—ed_protect/—
soc_sec/documents/publication/wcms_817572.pdf, accessed 31 August 2023).
2. Guidance on social protection for people affected by tuberculosis. Geneva: World Health Organization and the International Labour Organization, 2024. Licence: CC BY-NC-SA 3.0 IGO.
3. Shared by a Survivor Keyuri Bhanushali during a TBPPM webinar on Role of Private sector in social protection TBPPM
Friday Forum 24-1 | How can private providers offer social protection in TB?
