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Activating a Human Rights-Based Tuberculosis Response - A Technical Brief for Policymakers and Program Implementers

Activating a Human Rights-Based Tuberculosis Response - A Technical Brief for Policymakers and Program Implementers
Publication date: 
Jul 2020

Executive Summary

A human rights-based TB response supports and enhances public health measures and good clinical practice. The approach is founded on the dignity and autonomy of people affected by TB and the critical role they must play in all aspects of the disease response. A rights-based approach places special focus on TB key and vulnerable populations, it demands a gender-sensitive response, and it leverages existing law at international, regional, and national levels to strengthen the response. This includes the rights to health, nondiscrimination, privacy & confidentiality, information, liberty, and others. Respect for these human rights promotes the health and well-being of individuals and, in doing so, protects the public’s health.

Human rights are at the core of the World Health Organization (WHO) End TB Strategy, the United Nations (UN) Political Declaration on the Fight against TB, and the Stop TB Partnership Global Plan to End TB 2018-2022. The third principle of the End TB Strategy calls for the “[p]rotection and promotion of human rights, ethics and equity.” The UN Political Declaration commits countries to a “comprehensive response … that addresses the social and economic determinants of the epidemic and that protects and fulfils the human rights and dignity of all people.” And the Global Plan to End TB 2018-2022 declares that, to end TB, national governments must “[t]ransform the TB response to be equitable, rights-based and people-centred, with proactive efforts to reach key populations.”

Right to Health

The right to health encompasses a wide range of entitlements and freedoms to promote the highest attainable standard of physical and mental health for all. Access to good quality health facilities, goods, and services—on a nondiscriminatory basis— is a core component of the right to health and an obligation of every government.  This means that people affected by TB have a right to good quality vaccines, drugs, and diagnostics to prevent, diagnose, and treat latent TB infection, TB disease, and drug-resistant TB. It also means that people affected by TB have a right to access health facilities where they can obtain good quality, people-centered care from trained health care workers, including at the community level when appropriate.

The right to health is firmly established in law around the world. The Universal Declaration of Human Rights and six international treaties establish the right to health. Four regional treaties recognize the right to health. And the right to health is enshrined in 136 national constitutions, such as the constitutions of Brazil, Colombia, South Africa, and Thailand.

Fulfilling the right to health for people affected by TB will lead to better individual and public health outcomes. Making sure the best vaccines, diagnostics, and treatments are available and accessible for people affected by TB means national TB programs must stay up-to-date with global recommendations and ensure they are financially and technically capable of procuring and incorporating new technologies into their programs and interventions. National TB programs must also make economic and psychosocial services available and accessible to people affected by TB who need them during treatment, including nutritional support, cash assistance, and counselling. Ensuring TB services and facilities are of good quality and are available and accessible to people affected by TB also means governments and national TB programs must identify and remove all barriers to services and facilities and provide people-centered TB care.

Studies show that even when treatment is provided free of charge by national TB programs, physical and financial burdens reduce access to treatment. These include the cost of drugs and tests obtained from private providers, the distance and cost of transportation to clinics, and income loss from interruptions or loss of employment. Evidence also demonstrates that directly observed therapy (DOT) is associated with financial barriers to treatment, as well as stigma and discrimination against people with TB. Other research shows that DOT, itself, can be a barrier to treatment adherence.

Research also reveals that system-level barriers impede access to treatment for both drug-sensitive and drug-resistant TB treatments. These include shortages of first-  line TB drugs, monopolistic pricing of new drugs under patent, and operational challenges, such as the need for advanced technical capacity and infrastructure for new technologies. Abundant evidence also demonstrates that accessing the best available diagnostics and treatments is especially difficult for TB key and vulnerable populations, such as prisoners and mobile and migrant populations.

Right to Be Free from Discrimination

The right to be free from discrimination prohibits both direct and indirect discrimination against people affected by TB based on their actual or perceived health status in  both the public and private spheres. This includes health care settings, employment, education, housing, family, immigration, and access to social security and public entitlements. The right to nondiscrimination also prohibits discrimination against TB key and vulnerable populations, such as mobile and migrant populations, people living with HIV, people who use drugs, prisoners, and women, who are often stigmatized or denied care because of their social or legal status.

The right to be free from discrimination is widespread in law around the world. The Universal Declaration of Human Rights and seven international treaties prohibit discrimination. Six regional treaties establish the right to be free from discrimination. And 147 national constitutions protect against discrimination, such as the constitutions of Afghanistan, India, Kenya, and Peru.

Discrimination is closely related to and often the result of TB-related stigma. Stigmatizing language perpetuates and fuels discrimination of people affected by TB and of key populations who are most vulnerable to TB. Research demonstrates that discrimination against people affected by TB is widespread, touching upon all aspects of life, including health care, employment, education, housing, and the family. And evidence shows that stigma and discrimination against people affected by TB have grave consequences, with especially damaging, and qualitatively different, impacts for women. Stigma and discrimination lead to delayed diagnosis and treatment initiation; challenges in treatment adherence; increased expenses associated with testing and treatment; loss of income and employment; difficulties finding and maintaining housing; interruption of education; disruptions to personal relationships and difficulties in forming families; and diminished social status and quality of life, including poor mental health.

Right to Privacy & Confidentiality

The right to privacy & confidentiality comprises the right to keep personal health information private. This means that people affected by TB have the right to privacy in all matters related to their health, including whether they have TB infection or disease. Revealing, sharing, or transferring personal health information—electronically or otherwise—is only permissible when done with the informed consent of the individual and for the purposes of their care or to protect public health. Personal health information collected, stored, transferred, or processed during public health measures, such as public health surveillance and case notification systems, may be shared or transferred without the person’s informed consent only if it is done in an anonymous manner without the person’s name or any other personally identifiable information. To ensure that digital data containing personal health information of people affected by TB is kept confidential and secure in accordance with the right    to privacy & confidentiality, public health programs, research institutions, and health care providers must proactively implement robust safeguards within all electronic information systems.

The right to privacy & confidentiality is established in law around the world. The Universal Declaration of Human Rights and four international treaties establish the right to privacy. Six regional treaties recognize the right to privacy. And 175 national constitutions protect the right to privacy, such as the constitutions of Brazil, Ethiopia, Nigeria, and Pakistan.

Protecting the right to privacy & confidentiality of people affected by TB, including during public health surveillance, active case finding, screening, contact tracing, and case notification, combats stigma and discrimination and encourages health-seeking behavior, thereby protecting public health. By contrast, the failure to recognize and protect privacy & confidentiality discourages people affected by TB from seeking testing and starting treatment, as they may fear stigma and discrimination and the social and economic consequences that follow. This, in turn, endangers public health by promoting the spread of disease. Evidence from around the world confirms that people affected by TB have serious concerns about their privacy & confidentiality  and that there are negative consequences from the failure to protect privacy & confidentiality in health care, employment, and education settings. Despite this, a review of the national guidelines for the control, management, and treatment of TB in six countries that accounted for approximately 50% of all new TB cases in 2017 shows that only one country, South Africa, recognizes privacy or confidentiality of people affected by TB in health care settings.

Right to Information

The right to information comprises the right to seek, receive and communicate information. This means that people have the right to information about TB that is readily available, easily accessible, and understandable. All information about TB must be gender- and culturally-sensitive, imparted in a non-technical manner, in a language understood by the person receiving it, by trained counselors, including people who have themselves survived TB. This includes information about TB infection and disease, including prevention, symptoms, disease transmission, infection control, the duration of infectiousness, drug-resistance, and that TB is a curable disease. The right to information also includes information about TB prevention, testing, and treatment services—i.e., “treatment literacy.”

The right to information is established in law around the world. The Universal Declaration of Human Rights and five international treaties recognize the right to information. Six regional treaties establish the right to information. And 94 national constitutions enshrine the right to information, such as the constitutions of Malawi, the Philippines, South Sudan, and Venezuela.

Fulfilling the right to information for people affected by TB promotes health-seeking behavior and protects public health. Studies from around the world show that a lack of information on TB infection and disease, including about symptoms and how the disease spreads, puts people at higher risk for TB disease; erects barriers to services; contributes to delays in seeking care; causes people to self-medicate and hide their illness; and reduces treatment adherence. Evidence also demonstrates that a lack  of knowledge about TB treatments negatively affects treatment access, adherence, and completion. A systematic review of trials and observational studies found that education and counseling for people with TB were associated with higher rates of treatment adherence, treatment completion, and cure. And several studies have found that peer counseling, sometimes combined with other interventions, improves TB treatment adherence and outcomes, including among adolescents and people who use drugs.

Right to Liberty

The right to liberty protects people affected by TB from arbitrary or discriminatory detention, including for involuntary isolation or treatment. Involuntary detention, hospitalization, or isolation of a person with TB is a deprivation of liberty in all cases. In accordance with the right to liberty, involuntary isolation is only permissible as a measure of last resort, in narrowly defined circumstances, for the shortest duration possible, and only to protect the public’s health—never as a means of convenience  or punishment. Forced treatment of people with TB during involuntary isolation or hospitalization, or under any other circumstances, is never ethically justified and, in all cases, is a violation of human rights.

The right to liberty is established in law around the world. The Universal Declaration of Human Rights and five international treaties recognize the right to liberty. Six regional treaties establish the right to liberty. And 150 national constitutions enshrine the right to liberty, such as the constitutions of Argentina, Mali, Papua New Guinea, and Uganda.

Protecting the right to liberty of people affected by TB promotes improved individual and public health outcomes by encouraging health-seeking behavior and reducing stigma. Despite this, there is a lack of national laws and policies that explicitly protect the right to liberty in the context of TB and that establish clear rules and guidelines  for the rare circumstances when involuntary isolation is permissible. Moreover, involuntary isolation has grave social, economic, and physical and mental health consequences for people affected by TB and their communities. The UN Special Rapporteur on the Right to Health has explained that “[c]onfinement as a response to tuberculosis increases stigmatization of people with the disease, driving those most at risk underground and away from health care.” People isolated because of TB may be unable to earn income or they may lose their employment entirely, leading to negative financial consequences for themselves and their families. Confinement of people with TB may also exacerbate existing social inequalities and disadvantages. Evidence shows that people detained due to TB are more likely than other people with TB to come from socially disadvantaged groups, including the homeless, mobile and migrant populations, people living with HIV, people who use drugs, people with mental illness, and racial or ethnic minorities. Research also demonstrates that people confined due to TB are likely to experience stigma and social exclusion from their communities, friends, and families. And research shows that prolonged isolation for drug-resistant TB treatment induces feelings of fear, anger, self-blame, depression, and suicide.