A human rights approach to TB

Tuberculosis (TB) is deeply rooted in populations where human rights and dignity are limited. While anyone can contract TB, the disease thrives on the most vulnerable—the marginalized, discriminated against populations, and people living in poverty.

This guide examines the human rights dimensions of issues affecting people’s vulnerability to contracting TB and their access to TB cure. It looks at specific groups and settings where people are particularly vulnerable to TB and its impacts; and where, if they become sick with TB, are limited in their access to treatment—limitations created by stigma, lack of adequate information, and inadequate resource allocations to those most in need.

The principle of nondiscrimination is fundamental to public health and human rights thinking and practice. Gender discrimination, for example, in addition to directly affecting vulnerability to TB and access to TB services, can deny girls and women access to education, information, and various forms of economic, social, and political participation that can increase health risk.

Neglect of the right to information can also have substantial health impacts. Misinformation about what causes TB, how the disease is transmitted and whether it can be cured is linked to the stigmatization of TB and of people with TB. Children in households with TB may also be taken out of school or sent to work. Both situations deprive children of their right to education and put them in situations that may expose them to more prolonged contact with persons with active TB.

Prisons are examined as an environment that increases vulnerability to TB. It is argued that "because tuberculosis is easily diagnosed, treatable, and curable but may lead to death if neglected, contracting tuberculosis and not getting treatment because of poor prison conditions may be considered to be a violation of human rights."* Both the prison population and the general community have the right to protection from TB generated in prisons and other institutions.

The need to address TB and HIV together in light of the human rights dimensions is urged. Conditions that enhance vulnerability to TB—poverty, homelessness, substance abuse, psychological stress, poor nutritional status, crowded living conditions—also enhance vulnerability to HIV. Both epidemics register their highest rates of infection among populations that are typically disadvantaged or marginalized in their own societies.

The dual epidemic of HIV and TB raises issues of individual choice and confidentiality. Individuals have a right to privacy that protects them against both mandatory testing and disclosure of their health status. Individuals also have a right to education and information about TB, HIV, and the synergy between the two infections so that they can make informed choices about testing and treatment options.

"A health and human rights approach can strengthen health systems by recognizing inherent differences among groups within populations and providing the most vulnerable with the tools to participate and claim specific rights."**

Human rights is also presented in the document as a tool for data collection and analysis. Human rights principles and norms are relevant when choosing which data are collected to determine the type and extent of health problems affecting a population. Decisions on how data are collected (e.g. disaggregated by age, sex) also have a direct influence on the policies and programmes that are put into place. Collection of data should be disaggregated and analyzed to draw attention to subpopulations, particularly those vulnerable to TB, in order to ensure that discrimination can be detected and action taken. Attention must be paid to involving the most vulnerable and marginalized sectors of society in setting priorities, making decisions, and planning, implementing and evaluating programmes that may affect their development.

A human rights approach to TB is proposed as an avenue for social mobilization to stop TB. Social mobilization is defined as a broadscale movement to engage people’s participation in achieving a specific goal. It involves all relevant segments of society: decision and policy-makers, opinion leaders, nongovernmental organizations such as professional and religious groups, the media, the private sector, communities, and individuals. Social mobilization is a process of dialogue, negotiation, and consensus for mobilizing action that engages a range of players in interrelated and complementary efforts, taking into account the felt needs of people. The interdependence of human rights, for example the right to nondiscrimination and the right to information as integral to achieving the right to health, and the need for all levels of society to be mobilized around the core principles of human rights, calls for a social mobilization approach.

Health systems and health care delivery are increasingly taking human rights norms and standards into account. This is reflected in a new focus on questions such as: is there equality of access? Are privacy and confidentiality maintained? Do the providers practice nondiscrimination? Is there sufficient attention to vulnerable groups? Experience has demonstrated that when health systems take these and other human rights issues into account, patients and public health are both far better served.

This document is not intended to be a comprehensive account of all aspects of human rights that can affect people’s vulnerability to TB and the related risks and impacts. Rather, it examines equity and some key human rights principles such as freedom from discrimination and the right to information and education in order to generate new thinking and action in the global response to stop TB. It is acknowledged that considerably more work needs to be done to further develop the understanding and mobilize action on TB in relation to human rights.

 * Levy M, Reyes H, Coninx R. Overwhelming consumption in prisons: Human rights and tuberculosis control. Health and Human Rights, 1999, (1): 166–191