India bears the greatest burden of tuberculosis (TB) globally, with a quarter of all TB patients. There are about 2.4 million notified TB patients in the country, while almost 40% of the Indian population has latent TB infections.

The approach to TB prevention, care and support in India is largely biomedical, although TB patients suffer socio-economic consequences such as stigma and job loss which affect their adherence to treatment. The management of latent TB infections (LTBI) is yet to gain momentum in the country. The way forward is to engage with the private sector and enable community relationships; while there have been some successes, we still have a long way to go.

Our Approach

KHPT’s TB interventions place patients in the centre, supported and surrounded by an ecosystem of family and community. The ongoing Breaking the Barriers project, funded by the United States Agency for International Development employs a socio-ecological approach, a social approach that recognizes the structural and underlying barriers to desired behaviours that exist within specific vulnerable population groups. The project’s operational framework focuses on promoting the health and wellbeing of the TB patient and caregiver community in an enabling environment.

KHPT’s TB interventions are being implemented in Karnataka, Telangana, Bihar and Assam.

Our Achievements

• We have strong collaborative partnerships with the Central TB Division and State National Tuberculosis Elimination Programme (NTEP)
• Information, Education and Communication material developed by KHPT were adapted for nationwide circulation by the Central TB Division’ ‘TB Harega Desh Jeetega’ campaign
• We capacitated master trainers to train NTEP staff across the state in an initiative which was owned and scaled up across the state by the Karnataka state NTEP
• We have strong partnerships with the National Institute for Research in TB (NIRT, Chennai) and the National TB Institute (NTI, Bangalore)

About the project: The project aimed to empower vulnerable communities, in terms of TB awareness, demand generation, mitigation of TB stigma faced, and community lead monitoring of TB services, eventually for all health-related services.

Geography: Ballari, Bagalkot and Belgaum districts of Karnataka

Duration:  December 2021 – November 2022

Target population:  The project covered three vulnerable communities, the urban vulnerable, People Living with HIV and mining communities.

Objectives:

• To strengthen the TB response with rights-based, people-centred approaches, through community-led monitoring forums, among PLHIVs, the Mining population and urban poor.

• To sensitize and engage the elected representatives of local self-governments (PRI) in TB awareness, stigma reduction, and better linkages of service, schemes and support.
• To conduct the rapid CRG assessment in the project geographies among the focused vulnerable communities to elicit information on the barriers and inequalities in the community and develop community-led monitoring forums.
• To participate and engage in various TB advocacy and accountability initiatives at national, regional, and global levels.

Key Results:

• 221 community leaders from selected community structures from urban vulnerable communities trained on Community Rights and Gender (CRG) module
• 315 community leaders from mining area in Sandur taluk were trained on CRG
• Across 3 districts of Belgaum, Bagalkot and Bellary, 866 Gram Panchayats, 10127 Panchayat Raj Institution members were trained on their role of strengthening TB responses among the vulnerable populations
• 330 PRI members trained on CRG module

Context

One fourth of the global TB burden lies in India. A large proportion of these cases have not been reported to Nikshay, the national registry for monitoring TB patients. These ‘missing’ cases may be undiagnosed or receiving non-standardized treatment.

Patients receiving non-standardized treatment or individuals who discontinue treatment run the risk of developing Drug Resistant TB (DRTB). This is a major obstacle to effective TB care and prevention,
THALI was a patient-centric family-focused TB prevention and care initiative that aims to facilitate vulnerable populations’ access to quality TB services from health care providers of the patient’s choice.

The four-year (2016-2020) project was funded by the United States Agency for International Development (USAID).

THALI was implemented by Karnataka Health Promotion Trust (KHPT), in partnership with TB Alert India (TBAI), in Karnataka, Telangana and Andhra Pradesh.
Implementation

THALI’s key objectives were:

1. To demonstrate community-centred and community-driven interventions to improve health seeking behaviour and service delivery to increase TB case finding and treatment outcomes among vulnerable people diagnosed and initiated on treatment for TB.

2. To support and develop capacity of the National Tuberculosis Elimination Programme (NTEP), and leverage public resources to improve access to acceptable and quality TB services from public and private care providers, thereby increasing case finding and improving treatment outcomes.

3. To develop and demonstrate models and innovations for patient care and support which may be scaled up and replicated. These new models and innovations are designed to fill in gaps, or address challenges, in the health system and aid community health workers (CHWs) and NTEP staff in providing TB treatment, care and support.

Context

The Government of India was focused on scaling up access to MDR-TB
diagnostic and treatment services to over 750 million people by 2015. Project Axshya (meaning ‘free of TB’) was launched in April 2010 as the civil society component of a five year project funded by a Round 9 grant from the Global Fund to Fight AIDS, TB and Malaria (The Global Fund). Axshya aimed to support the Government of India’s Revised National Tuberculosis Control Programme (currently known as the National Tuberculosis Elimination Programme) to expand its reach, visibility and effectiveness.

Implementation

Axshya engaged community-based providers to improve TB services, especially for women and children, and marginalised, vulnerable and TB- HIV co-infected populations. Axshya was coordinated by two civil society representative organisations, the International Union against Tuberculosis and Lung Disease and World Vision India. KHPT implemented the initiative in Karnataka from 2010 to 2015.

Globally, one in four persons with tuberculosis (TB) lives in India where an estimated 2.1 million develop TB each year and 240,000 die of the disease. An estimated one million people in India with active TB are ‘missing’, and believed to be managed by private health providers. Such patients are not notified to health authorities and are presumed to be poorly managed.

Context

The private sector is the first point of contact for health services for the majority of people in India accounting for 60 to 80 per cent of outpatient health care in India. However, only two per cent of all patients referred for TB diagnosis and testing are from the private sector. This relatively low number of referrals suggests that a significant number of patients are receiving TB treatment in the private sector. Many patients with TB, especially those on private treatment, but including beneficiaries of DOTS, the strategy implemented by India’s Revised National Tuberculosis Control Programme (RNTCP), receive inadequate or inappropriate treatment support. This result in treatment non-compliance, sub-optimal treatment outcomes, spread of infection and increased risk of drug resistance.

Implementation

The intervention demonstrated an interface mechanism to improve access to quality TB services by engaging and building the capacity of private healthcare providers. It focused on engaging the urban slum community to raise awareness, building capacities of the private providers and bridging gaps between the private and public healthcare sectors. A successful adaptation of the public private provider interface (PPIA) model, developed by Bill and Melinda Gates Foundation in 2013, it was funded by USAID.

KHPT implemented the project from 2014 – 2015 in 42 towns across 12 districts in Karnataka in collaboration with Abt Associates.

Impact

The programme resulted in:

• 50 per cent reduction in the delay in initiating TB treatment of patients diagnosed under the public sector programme in the intervention areas
• a clear increase in the numbers of suspect TB patients accessing the Designated Microscopy Centres (DMC) for diagnosis of the TB
• 28 per cent increase in the total TB patients diagnosed in the year from the implementation districts
• the use of innovative methods including a telephone ‘care-line’ and patient support groups, which ensured that treatment adherence among patients taking treatment from the private sector was at par with the national programmes
• an improved understanding of influencers of urban slum communities towards better health seeking and treatment behaviour

Context

The Market-based Partnerships for Health aimed to improve the environment for commercial sector engagement in key priority health areas by forging partnerships between the private and public sectors. It used a social franchising model to create and expanded the network of private providers on a large scale to adopt DOTS referral, diagnosis and treatment policies. KHPT implemented the project, funded by USAID through Abt Associates, Delhi, from 2011 to 2012.

Implementation

A high intensity community outreach plan covered 50 per cent of the targeted population in urban slums in 13 districts in Karnataka. The communities were mobilised to substantially reduce gaps in knowledge, improve their ability to access TB services and successfully adhere to treatment as mandated by the protocols. A systematic, collaborative sustainability plan was designed with the Revised National Tuberculosis Control Programme (RNTCP) for eventual transition to the government.