In this issue of our newsletter, we invite you to read original commentaries by SSHIFTB experts, highlight mental health awareness month and pride month, recent publications by SSHIFTB contributors, our next journal club, and upcoming events and opportunities.
In March 2024, a week before World TB Day, a letter dated 18 March 2024 was issued by the Deputy Director General (DDG) TB regarding the drug procurement for drug-sensitive (DS) TB.[3] It stated that “the procurement process of most anti-TB drugs and diagnostics has been completed at the national level. Central Government procurement of DSTB-IP (A) and DSTB-CP (A) is at an advanced stage. However, the supplies may get delayed due to unforeseen and extraneous circumstances”. Further, it stated that the approval of the competent authority was being conveyed for local procurement of these drugs for the period of three months so that individual patient care would not be affected. There was flexibility offered regarding pack sizes and if the dose combinations and dosages per pill per day were as per the National TB Elimination Program (NTEP) recommendations. Clear instructions were provided that the drugs could be procured at the State/District level by utilizing the budget under the National Health Mission (NHM) already approved by the relevant head. Also, on a case-by-case basis, the provision for reimbursement of costs towards the drugs was stated in case the district health facilities were unable to provide free drugs.
Despite the above clear instructions from the DDG office, anti-TB drug supplies were disrupted in many states for nearly four to five months (March-July 2024) and some rural areas continue to have a drug shortage...
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?
The urban Accredited Social Health Activists (ASHA) programme which is one of the critical components of National Urban Health Mission (NUHM) was launched in 2013. The Mission aims at improving health status of the urban population particularly slum dwellers and providing essential primary healthcare services with reduced out of pocket expenses. ASHAs are incentivized community health workers, who link the community and health services and contribute in improving health seeking of the urban poor. Prevalence of Tuberculosis (TB) along with other infectious and non-infectious comorbidities is alarming in urban poor populations. Hence, augmentation of available health resources including frontline health workers such as urban ASHAs is essential for India’s commitment for ending TB by 2025.
The Foundation for Medical Research (FMR) undertook a pilot evaluation of U-ASHA programme in Mumbai and Pune Cities and assessed their preparedness for TB control as one of the vertical health programmes (2022-23).
Background: Public-private interface agency (PPIA) intervention models in Patna (E. India) and Mumbai (W. India) for pulmonary drug-sensitive (DS) tuberculosis (TB) patients were evaluated over 2 years after maturity to examine effect on reduction of patient pathways and retention. The models engaged private providers, diagnostic facilities and pharmacies into an effective network providing free diagnostic tests and treatment.
Methods: A population-based retrospective study was undertaken to assess effectiveness of the PPIA model in care pathways of 64 (Patna) and 86 (Mumbai) patients through in-depth interviews conducted within 6 months of initiation treatments to identify types and facilities accessed, duration to diagnosis and treatment. Median durations based on facilities accessed were statistically analysed. Comparisons were made with baseline values and endline pathways of patients accessing PPIA engaged/non-engaged facilities in private and public sectors.
Results: Compared to non-engaged facilities, persons accessing engaged facilities at first point-of-care had shorter pathways (Mumbai: 32 vs 43 days), (Patna: 15 vs 40 days). Duration for first care-seeking was considerably shorter for patients accessing PPIA in Patna and for both engaged and non-engaged private facilities in Mumbai (4 days). Whilst PPIA engaged facilities diagnosed more cases than others, the RNTCP in Mumbai provided diagnosis early. There was good retention of patients by PPIA-engaged (1 st) facilities (90% post-diagnosis in Patna) but this was affected by the hub-spoke referral system in Mumbai (13%). Second diagnosis is a common feature in Mumbai. The spoke-hub model in Mumbai contributed considerably to treatment delay; PPIA-engaged providers were better at retaining patients post treatment initiation 11/25 (44%).
Conclusion: PPIA-engaged facilities, accessed at onset, result in marked reduction in pathway durations. Such initiatives should engage a critical mass of competent providers, proximal investigation facilities with enhanced disease awareness and literacy efforts amongst communities. Patient movement should be minimized for early treatment and retention.
Keywords: DSTB; Public private interface agency; duration and delays; pathways; spoke and hub.
Finding missing tuberculosis (TB) cases from the “under-reached” population of urban slums and connecting them with TB services is a priority and ongoing challenge for India. It requires the effective engagement of community health workers including urban Accredited Social Health Activists (U-ASHAs). The study aimed to understand the current engagement of U-ASHAs in TB care and their commensurate preparedness in terms of TB knowledge and training. An exploratory study was conducted in Mumbai and Pune cities of Maharashtra during 2022–23. The study used a mixed-methods approach, including a semi-structured survey of U-ASHAs (n = 222) and in-depth interviews with relevant stakeholders (n = 33). The statistical analysis used was descriptive statistics using MS Excel. The average age and work experience of U-ASHAs were 35.4 (21–50) years and 2.7 (0.5–6) years, respectively. They considered maternal child health services as their main portfolio and TB as an ancillary program. They were mainly involved in a biannual active case finding (ACF) and were recently envisioned as TB treatment supporters with poor clarity about other roles in TB care. Just half-day training for TB as part of 8-day general induction training, brief updates before ACFs, and the absence of an on-the-job supervisory structure resulted in TB knowledge gaps particularly for the latest diagnostic tests, adverse drug reactions, government schemes for TB patients, and contact tracing. Conclusions: Intermittent TB activities coupled with insufficient training impede U-ASHAs’ functionality in TB care. Clarity of TB-related roles, integration of TB activities in daily tasks, comprehensive training, and on-the-job supervisory structures have merit in strengthening U-ASHAs’ engagement in urban TB care.
Background: Delays in accessing effective health care plays a pivotal role in increasing Tuberculosis (TB) transmission within the community. Patna, North India, with high levels of poverty and weak public health system, faces huge challenges for achieving effective TB control. The study aims to determine delays that occur from onset of TB symptoms until initiation of pulmonary TB (PTB) treatment among patients in Patna.
Methods: Of the 109 self-reporting TB patients identified through an active household survey, 64 PTB patients were interviewed. First care seeking, TB diagnostic and treatment initiation durations were calculated and delays defined for new and retreatment patients and minors and adults. Outliers exhibiting extreme delays were additionally identified.
Results: A cross sMean total pathway duration for TB care was 40days, with diagnostic duration contributing to 58% of the duration. No significant differences were noted between new and retreatment patients. Minors, comprising of 30% of total PTB patients accessed care faster than adults, but showed significantly higher diagnostic duration (38days vs. 17days). Preference for private sector, chemists and allopaths was seen throughout the pathway.
Discussion: Patna requires a more effective harnessing of the private sector augmented with reliable diagnostic investigations and a focus on quality.
Keywords: Delays; Pathways to care; Patna; Private providers; Pulmonary tuberculosis.
Timely diagnosis and treatment initiation are critical to reduce the chain of transmission of Tuberculosis (TB) in places like Mumbai, where almost 60% of the inhabitants reside in overcrowded slums. This study documents the pathway from the onset of symptoms suggestive of TB to initiation of TB treatment and examines factors responsible for delay among uncomplicated pulmonary TB patients in Mumbai.
A population-based retrospective survey was conducted in the slums of 15 high TB burden administrative wards to identify 153 self-reported TB patients. Subsequently in-depth interviews of 76 consenting patients that fit the inclusion criteria were undertaken using an open-ended interview schedule. Mean total, first care seeking, diagnosis and treatment initiation duration and delays were computed for new and retreatment patients. Patients showing defined delays were divided into outliers and non-outliers for all three delays using the median values.
The mean duration for the total pathway was 65 days with 29% of patients being outliers. Importantly the mean duration of first care seeking was similar in new (24 days) and retreatment patients (25 days). Diagnostic duration contributed to 55% of the total pathway largely in new patients. Treatment initiation was noted to be the least among the three durations with mean duration in retreatment patients twice that of new patients. Significantly more female patients experienced diagnostic delay. Major shift of patients from the private to public sector and non-allopaths to allopaths was observed, particularly for treatment initiation.
Achieving positive behavioural changes in providers (especially non-allopaths) and patients needs to be considered in TB control strategies. Specific attention is required in counselling of TB patients so that timely care seeking is effected at the time of relapse. Prioritizing improvement of environmental health in vulnerable locations and provision of point of care diagnostics would be singularly effective in curbing pathway delays.
Background: Mumbai is witnessing a rising incidence of all forms of drug resistant tuberculosis (DR-TB).
Methods: A population-based, retrospective study was conducted between April and July 2014, in 15 high TB burden wards in Mumbai, to capture the patient pathways to TB care. A total of 23 DR-TB patients were identified and their pathways to access DR-TB care were recorded using semi-structured interviews.
Results: The total DR-TB pathway time of new patients (who did not report any past episode of TB) (180 days; IQR 123,346) was found to be more than twice that of retreatment patients (who reported a past episode of TB) (69 days; IQR 42,128).
Conclusions: The unacceptable delay for diagnosis and treatment of DR-TB in Mumbai advocates for consistent implementation of early screening of patients using rapid gene-based technologies.
No Abstract Available
Introduction: The Indian Tuberculosis (TB) Programme currently faces the dual challenges of tackling increasing numbers of drug resistant (DR) TB cases and regulating practices of a pluralistic private sector catering to TB patients. A study of health seeking behaviour of DR-TB patients in such a situation, offers an opportunity to understand the problems patients face while interacting with health systems.
Methodology: Forty-six DR-TB patients drawn from 15 high TB burden wards in Mumbai were interviewed using an open ended interview tool. Interviews were audio recorded and transcribed. Pathway schematics developed from analysis of patient records, were linked to transcripts. Open coding was used to analyse these units and themes were derived after collating the codes.
Results and discussion: The paper presents themes interwoven with narratives in the discussions. These include awareness-action gap among patients, role of neighbourhood providers, responsiveness of health systems, the not-such a 'merry go round' that patients go/are made to go on while seeking care, costs of diagnostics and treatment, and how DR-TB is viewed as the 'big TB'.
Conclusion: The recommendations are based on a preventative ethos which is sustainable, compared to interventions with top-down approaches, which get piloted, but fail to sustain impact when scaled up.
Dr. Nerges Mistry is a Director and Trustee of The Foundation for Medical Research, Mumbai and The Foundation for Research in Community Health, Pune. A microbiologist and immunologist by training from the University of Mumbai and The University of Birmingham, U.K, Dr. Mistry’s work encompasses infectious diseases with a recent focus on AMR stewardship, TB transmission, diagnostics, infection control and nutritional approaches to engender better outcomes for patients. She has been involved in studying TB patient pathways with reference to private sector engagements in Mumbai and Patna. She was an active member of the Mumbai Alliance against tuberculosis and participated in a number of advocacy measures for TB patients in Mumbai
Current major on-going projects in tuberculosis research in India include
Besides TB, Dr. Mistry is also involved in studies on COVID genomics, wastewater surveillance for SARS-CoV-2, influenza viruses, and respiratory syncytial virus (RSV). She has over 115 publications in peer-reviewed journals and has been a principal investigator of over 40 major projects. She serves as an Expert on the Global Coalition Against Tuberculosis (GCAT), is an Advisor to the TB PPM Learning Network and also a member of the National Technical Expert Group on Diagnosis of TB under NTEP.
Introduction: The COVID-19 pandemic was an unprecedented challenge to health systems worldwide and had a severe impact on tuberculosis (TB) case notifications and service delivery. India, Indonesia and Nigeria are high TB-burden countries where the majority of initial care-seeking happens in the private health sector. The objectives of this study were to (1) explore policy-makers' perspectives on the impact of the COVID-19 pandemic on private sector TB service delivery in India, Indonesia and Nigeria and (2) identify cross-cutting insights for pandemic preparedness with respect to TB service delivery.
Methods: From May to November 2021, 33 interviews were conducted with key policy-makers involved in health service administration, TB service delivery and/or the COVID-19 response in India, Indonesia and Nigeria (n=11 in each country). Interviews focused on the impact of COVID-19 on TB services and lessons learnt for pandemic preparedness with respect to TB in each study context. Data were analysed thematically using a hybrid inductive-deductive approach, informed by Haldane et al's Determinants of Health Systems Resilience Framework.
Results: Policy-makers highlighted the crucial role of intersectoral collaboration, effective governance, innovative financing strategies, health workforce reallocation and technological advancements such as virtual consultations and mHealth in strengthening TB service delivery amid the COVID-19 pandemic. India relied on patient-provider support agencies to implement a joint strategy for TB care across sectors and states. Indonesia engaged networks of private provider professional associations to facilitate coordination of the COVID-19 response. Nigeria implemented a pandemic policy for public-private referral for the continuity of TB care.
Conclusions: Countries implemented varied measures to support TB service delivery during the COVID-19 pandemic. This study presents insights from three countries (India, Indonesia and Nigeria) that together offer a 'menu' of possibilities for supporting pandemic preparedness with respect to TB care vis-à-vis strengthening health systems resilience.
Keywords: Global Health; Health services research; Health systems; Qualitative study; Tuberculosis.
With an estimated two billion people being carriers of latent tuberculosis infection (LTBI), the gains achieved by increasing access to diagnostics and treatment, although substantial, have had a modest impact on the global burden of tuberculosis (TB). At the same time, increased access to treatment has had the unintended consequence that drug-resistant TB (DR-TB) has increased dramatically. Earlier TB control strategies strongly emphasizing medical treatment have failed to address these issues effectively. The current strategy to eliminate TB by 2050 is accompanied by a call for a paradigm shift, emphasizing patient rights and equity more. Based on ethnographic fieldwork in Odisha, India, and global-level TB conferences, this paper contrasts the dynamics of global health policy and strategy-making with the lived realities of patients with DR-TB. A more thorough rethinking of the biosocial dynamics that impact the pathogenic disease is required to develop a comprehensive paradigm shift for TB control in the twenty-first century.
Keywords: antimicrobial resistance; biosocial; global health; tuberculosis.
Introduction: The COVID-19 pandemic created unprecedented challenges in the field of global health. Nigeria, Indonesia and India are three high tuberculosis (TB) burden countries with large private health sectors. Both TB and the private health sector faced challenges in these countries because of COVID-19. This study aimed to compare the COVID-19 control measures and policies in the provision of TB care services and gain insights from policymakers on how the pandemic affected the provision of TB services in the private healthcare sector, how each country adapted, and identify lessons learned for health system preparedness.
Methods: Qualitative, in-depth interviews were conducted among a purposive sample of 11 national and sub-national policymakers in each country. Thematic content analysis was conducted on the data collected using an adapted WHO Health Equity Policy Framework.
Results: Results revealed three policy dimensions under costs, access, and quality. Under healthcare costs, policymakers highlighted resource allocation and diversion of TB resources to COVID response, and increased operational costs for private provider. Under healthcare access, key themes included reduced TB case detection due to fear of COVID-19, disrupted diagnostic services, and adaptations such as extended medicine supplies and tele-consultations. Under healthcare quality, themes included compromised TB diagnostic accuracy due to similar respiratory symptoms with COVID-19, and strain on laboratory infrastructure due to competing demands from both diseases. Policymakers across the three countries pointed to the need for strengthening private-public partnerships (PPP) for healthcare service delivery and continued private sector investment to facilitate the continuity of TB care within a pandemic context.
Conclusion: The results of this study provide an overview of the impact of the pandemic from the perspective of private facilities and policymakers in Nigeria, Indonesia and India, which can inform future policy and ways forward in strengthening PPP for healthcare service delivery in high TB burden countries.
Keywords: COVID-19; India; Indonesia; Nigeria; Private sector; TB healthcare.
