Hyeyoung Lim, Ralf Jurgens, Alexandrina Iovita, and Joanne Csete
Tuberculosis disproportionately affects people marginalized by poverty, people in detention, and individuals living with and vulnerable to HIV. The End TB Strategy of the World Health Organization (WHO), endorsed by many donors and partners, includes as two of its four founding principles the protection and promotion of the human rights of those affected by the disease and the strengthening of civil society and community-based organizations that are crucial to national TB responses.[1] The Global Fund has for some years been the largest donor to TB programs in low- and middle-income countries, accounting for 76% of donor funding for TB in 2020.[2] But even in Global Fund-supported programs, interventions aiming to address stigma, discrimination, and other human rights concerns have been too few.
This viewpoint summarizes the Global Fund’s efforts to assess shortfalls in funding for TB-related human rights programs and to address those shortfalls. Many of these efforts have also involved strengthening community-based organizations led by or working directly with persons affected by TB.
In monetary terms, these efforts have already borne fruit. Between 2014-16 and 2020-22, Global Fund TB grants for human-rights programs increased from a negligible 0.08% to 2% of overall TB grant resources, reaching the Global Fund’s key performance indicator and equaling US$ 34.5 million. This increase is the result of intensive efforts of the Global Fund and its partners, as described below.
A first step—together with Stop TB Partnership, WHO, TB experts and community members—was to define a set of program areas that the Global Fund now expects countries to include in all HIV, HIV/TB and TB funding requests, to reduce stigma and discrimination and other human rights-related barriers to HIV and TB services. Financial and technical support is provided in these programs areas which include, for HIV and TB, stigma and discrimination reduction, human rights training for health workers, engagement with law enforcement and legislative authorities, rights literacy, legal services, reducing gender-based discrimination, and monitoring and reforming punitive laws and policies. In addition, for TB, support aims to improve services in prisons, ensure confidentiality and privacy, eliminate unjust detention for treatment, and empower patient groups. Detailed technical guidance on these programs is part of the Global Fund’s application materials.[3]
Another major step has been the Breaking Down Barriers (BDB) program launched by the Global Fund in 2017, which supports 20 countries to develop and sustain comprehensive programs to reduce human rights-related barriers to HIV and TB services.[4]
Independent researchers conducted baseline assessments of human rights-related barriers to HIV services in all 20 countries and to TB services in 13 of these countries. Based on these assessments, government, civil society, and other stakeholders developed country-owned national strategic plans for developing or scaling up programs to address the barriers identified, including for TB in many countries.[5] In some countries, the Stop TB Partnership also conducted TB-related human rights assessments, as described by Brian Citro et al.[6]
Midterm assessments of BDB conducted in 2020-2021 documented remarkable progress in rights-centered TB programming in many countries. With respect to access to justice, BDB has been responsible for an unprecedented investment in legal and paralegal services, including the deployment of hundreds of community-based paralegals who handle TB-related issues.[7] In Ghana, for example, paralegals recruited from among TB survivors manage cases of TB-related discrimination in employment, evictions, confidentiality of TB status, and other issues. In Kenya, in addition to paralegal activities, the Global Fund supported training of 131 lawyers on TB and human rights. A regional workshop in South Africa by KELIN, the AIDS and Rights Alliance for Southern Africa, and the Southern Africa Litigation Center trained lawyers in areas such as responding to unjust detention of people who have not completed TB treatment. In Côte d’Ivoire, legal service providers were mobilized to assist people with TB who lost their jobs or were detained unjustly.
To complement legal and paralegal services and empower people living with TB to claim their rights, the Global Fund is supporting TB-based rights literacy efforts in a number of countries. In some, “TB champions” chosen from among survivors of TB are raising awareness of TB-related rights and what to do when they are violated. In Kenya, KELIN armed TB champions with detailed written guides on ways to identify and report human rights violations related to TB. In Côte d’Ivoire, a network of TB-focused NGOs trained “expert patients” to raise awareness about TB-related rights using a Patients Charter for TB Care.
In the longer term, access to justice and health services for people affected by TB will be improved by removing or reforming unjust laws and policies—work that is supported by BDB in a number of countries. Organizations receiving Global Fund support in Kyrgyzstan, for example, successfully pushed to amend a TB-specific law to protect economic and health rights of people with TB, including unemployed persons. Complementary advocacy helped to enable people to receive TB treatment without the usual residency registration requirement. In Ghana, the NGO TB Voice Network advocates for legal protection against firing people while they undergo treatment for TB.
Community-led monitoring of human rights-related barriers to TB services, supported by the Global Fund in a number of countries, can also be empowering to people affected by TB. In Côte d’Ivoire, the monitoring system of human rights-related barriers to HIV services was extended to include TB-related barriers. In Kyrgyzstan, the NGO TB People conducts regular monitoring of TB services, reporting results to a web-based platform. Activity in this area led to the creation by the Ministry of Health of “trust councils” at TB centers that receive and act on the results of community-led monitoring to improve services.
Both men and women face gender-based barriers to TB care that are frequently neglected in programming. Global Fund support has enabled efforts to address these barriers in several countries. In Kenya, a national TB gender assessment identified financial barriers to TB services faced by women, especially those in the informal sector, and the absence of TB services in male-dominated employment sectors, such as truck driving and quarry mining. In the Philippines, studies produced with Global Fund support highlighted the need for gender-related TB indicators in national data systems.
Improving TB services for currently and formerly incarcerated persons has been among the most active areas of rights-based TB programming in BDB countries. In Ukraine, the NGO FreeZone, led by former prisoners, developed a training program for prison personnel that includes information on best-practice TB services and also trains incarcerated people on TB services in preparation for their release. The Ukrainian Helsinki Union in 2019 filed three cases in the European Court of Human Rights on behalf of incarcerated persons with TB. The NGO TB People in Kyrgyzstan, working with paralegals, has helped former prisoners with restoring documents and regaining property. In Nepal, a 2018 study of TB risk helped lead to an updated training program for prison staff that includes a focus on TB and human rights.
Efforts to reduce TB-related stigma are ongoing in virtually all BDB countries. The Global Fund will continue to support the implementation of the TB Stigma Assessment. In Sierra Leone, the NGO CISMAT developed assessment tools for TB stigma appropriate for use with health and law enforcement workers. TB People in Kyrgyzstan has worked with Islamic leaders and madrasas to help them fight TB-related stigma. In Nepal, mass media messages on TB rights and gender in several languages have reached thousands of people. In South Africa, TB Proof has continued to advocate for eliminating stigmatizing language in government documents and public statements, for example, referring to people who do not complete treatment as “defaulters”.
Global Fund support has also enabled program managers to respond to COVID-19-related threats to TB services. In Ghana, COVID-19-related stigma and fears were widespread early in the epidemic. People living with TB who had a cough feared being misidentified as having COVID-19 and thus hesitated to use health facilities. The NGO TB Voice Network produced a video to raise awareness of the need for people with symptoms of either disease to seek care without being stigmatized, eventually reaching about 100,000 people.
Building on lessons learned from the work undertaken so far, the Global Fund is committed in its new 2023-28 Strategy to further scale up support to countries, working with communities and partners such as Stop TB Partnership, striving for national TB responses that embody human rights ideals and empower people living with and affected by TB.[8]
Hyeyoung Lim works with the Community, Rights and Gender Department of the Global Fund
Ralf Jurgens works with the Community, Rights and Gender Department of the Global Fund
Alexandrina Iovita works with the Community, Rights and Gender Department of the Global Fund
Joanne Csete is Associate Professor, Population and Family Health, Columbia University Irving Medical Center, New York, USA.
References
[1] World Health Organization. The End TB Strategy. Geneva, 2015. https://apps.who.int/iris/handle/10665/331326
[2] World Health Organization. Global Tuberculosis Report 2021. Geneva, 2021, p 22. https://www.who.int/publications/i/item/9789240037021
[3] Technical Brief: Tuberculosis, Gender and Human Rights. Second, revised version, 2020: https://www.theglobalfund.org/media/6349/core_tbhumanrightsgenderequality_technicalbrief_en.pdf
[4] https://www.theglobalfund.org/media/1213/crg_breakingdownbarriers_qa_en.pdf.
[5] See national strategic plans from the BDB countries at https://www.theglobalfund.org/en/funding-model/throughout-the-cycle/community-rights-gender/
[6] B. Citro, V. Soltan, J. Malar, et al. « Building the evidence for a rights-based, people-centered, gender-transformative tuberculosis response: An analysis of the Stop TB Partnership Community, Rights, and Gender Tuberculosis Assessment,” Health and Human Rights Journal (2021) 23/2 pp.253-267.
[7] Program examples cited here are from the midterm assessments of BDB, which are available from the Global Fund at https://www.theglobalfund.org/en/funding-model/throughout-the-cycle/community-rights-gender/
[8] https://www.theglobalfund.org/media/11612/strategy_globalfund2023-2028_narrative_en.pdf.