Geneva, March 01: On Zero Discrimination Day, The Stop TB Partnership highlights the plight of millions of people who face prejudice every day because they are affected by diseases such as tuberculosis or HIV/AIDS. They are often shamed and devalued; they lose employment opportunities; they are socially shunned. This discriminatory behavior is called stigma, and we must eradicate it if we are to fulfil our vision of a world without TB by 2030.
Stigma harms the livelihoods, and health of individuals and their families who experience it. Correspondingly TB stigma severely hinders global and national TB responses. It exacerbates the medical and social hardship of TB and acts as a barrier to accessing treatment care and support. When the surrounding environment is stigmatizing and discriminatory, it begins to push those with TB to stigmatize themselves. People who fear losing their jobs, their loved ones or being kicked out of school or their homes because of TB are less likely to seek testing and treatment for the disease, making the already challenging response even more difficult. Stigma and discrimination are not only human rights violations; they are a fundamental cause of population health inequalities. To end TB everyone must recognize it as such and work together to eliminate TB stigma.
Stigma and discrimination in TB is a complex issue and addressing this means working towards restoring the dignity of the individual and addressing the social causes. This not only needs an understanding of what stigma and discrimination actually is but also the courage to shake the societal norms that perpetuate stigmatizing and discriminatory behaviors and attitudes.
In the book “Women and Stigma - Conversations of Resilience in the war against TB” published by The Global Coalition of TB Activists, two women share their painful experiences of stigma and discrimination. Family members, best friends, partners and colleagues keep away, and the women experience fear, loneliness and isolation, having no-one to reach out to for help.
Oxana from Moldova explains “When people start keeping their distance from you, one can’t but help feel guilty about contracting TB. You start thinking something is wrong with you, even when you stop being (medically) infectious because people just don’t know or understand TB enough. My own best friend stepped away from me when I met her. Even though I was not infectious anymore, her reaction to me made me feel so miserable.”
Mileni a dentist from Venezuela began to stigmatize herself: “On hearing that I had TB, my patients started getting scared and preferred not to visit me for dental consultations. I felt rejected and began keeping myself away from everyone, including my family and friends because I did not want to infect anyone. That was hard to do.”
While almost all countries in the world have some form of legal protection against discrimination on grounds of sex, gender, race and HIV status, none explicitly prohibit discrimination on the basis of having TB or being a TB survivor. In some countries, people affected by TB are protected by laws addressing disability, like in the United States. However, discrimination against people affected by TB is not explicitly called out and prohibited. This must change now.
The implementation of Stop TB Partnership's Community, Rights and Gender Assessment Tools support countries identify the barriers to access, a process that can alter societal norms that perpetuate discriminatory behaviors and attitudes. In particular, the Legal Environment Assessments being conducted in countries around the world are identifying the gaps and barriers in legal environments and ultimately call for explicit protections against the discrimination of people affected by TB in law, policy and practice. Every country should have these protections. Without them, we are failing to protect people affected by TB from discrimination, thereby impeding global efforts to End TB.
There exists explicit prohibition of discriminating against someone based on their HIV status through legislation in several countries, but this is not the same for TB. Through advocacy and political pressure, the Stop TB Partnership will advocate and support countries to integrate such legislation into national’ laws while carrying out public campaigns that raise awareness of TB stigma.
The Stop TB Partnership, with support from USAID and in collaboration with the Global and Regional Community Networks, health care workers from the Global Coalition of TB Activists, human rights experts from Northwestern Pritzker School of Law and technical partners such as WHO and KNCV, have developed TB stigma assessment tools for countries to assess the types, levels, causes and impact of TB stigma and develop recommendations to address them. The tools which will be available in March 2019, link to and draw from existing work on TB stigma measurement, led by KNCV, and are informed by The Stop TB Partnership’s Community, Rights and Gender portfolio of work, and the TB and Human Rights Information Note.
The Stop TB Partnership is also working with partners and countries to encourage and support all TB programmes to be rooted in a human-rights based approach. This addresses inequity in social treatment by emphasizing the rights of people with and vulnerable to TB, including the rights to life, health, nondiscrimination, privacy, informed consent, housing, food and water. People affected by TB should be able to claim their rights to information, participation, and informed consent; and win greater protections against discrimination through litigation and advocacy based on constitutionally derived human rights.
This is the bigger picture. Yet right now, millions of people are being discriminated against based on their TB status. At grassroots level, we support our partners on events that bring rural and urban communities and influencers together to build awareness about these issues, often led by TB and HIV/AIDs survivors and champions. If people know their rights, communities and institutions are better informed about TB stigma and the process of social change required to end TB stigma can begin
It only takes listening, taking the suggestions seriously and addressing the issues – simple but it can make a huge, even lifesaving difference to the people who need it most, ending stigma and discrimination and making the painful TB journey a little better.
Contributors to this article are Blessina Kumar, CEO Global Coalition of TB Activists, Brian Citro, Assistant Clinical Professor of Law at Northwestern Pritzker School of Law and James Malar, The Stop TB Partnership.
Women and Stigma is a freely downloadable book by The Global Coalition of TB Activists (GCTA). Go HERE to download it.