Stigma, Discrimination, Could Kill More TB Patients than the Disease itself

The Stop TB Partnership calls for placing social justice and protection of human rights at the center of Tuberculosis responses

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The Stop TB Partnership has called on high burden countries for tuberculosis (TB) to invest in interventions that overcome the prevalent human rights barriers that currently diminish the effectiveness of national TB control efforts and ensure social justice equality for all.

This call comes as new evidence, published in a recent peer-reviewed publication, showing that stigma and discrimination against people affected by TB are the leading human rights barriers impeding access to TB prevention, diagnosis, treatment, care and support.

In Tanzania Tuberculosis remains among the top ten causes of death and among admissions aged five years and above. This suggests that there is an even a greater degree of urgency to fight the disease

The paper, published in the Health and Human Rights Journal, summarizes the findings of Community, Rights and Gender (CRG) assessments carried out in 20 countries.

“At the 2018 UN High-Level Meeting on TB, world leaders made pioneering commitments to prioritize communities, human rights and gender in the TB response,” said Dr. Lucica Ditiu, Executive Director, Stop TB Partnership.

“The review of recent Community, Rights and Gender assessment findings from 20 countries mean that we now, for the first time, have the evidence needed to show that we must have a TB response centered on social justice and human rights.”

Between 2018 and 2021, 20 countries across four regions—Africa, South Asia, Southeast Asia, and Eastern Europe and Central Asia—carried out CRG assessments, and these reports were reviewed, analyzed and summarized in a paper published in late December 2021.

The paper, developed with the support of the Stop TB Partnership and with funding from USAID and the Global Fund to Fight AIDS, Tuberculosis and Malaria, analyzed the assessment findings using seven dimensions of the normative right to health framework: availability, accessibility, and quality; nondiscrimination and equal treatment; health-related freedoms; gender perspective; vulnerable and marginalized groups; participation; and remedies and accountability.

The CRG assessment is a community-based participatory research tool that assesses and highlights the significance of human rights, law and gender in the TB response. It aims to establish recommendations to overcome the barriers and challenges on the journey to accessing TB services and completing treatment.

“Forty years after AIDS was first identified, the links between human rights and the spread and impact of HIV are widely acknowledged and recognized. Yet, nearly 140 years after the discovery of the bacteria that causes TB, attention to the rights of people affected by TB, as well as the funding needed to protect those rights, remain inadequate.”

Dr. Lucica Ditiu, Executive Director, Stop TB Partnership.

“The TB response between 1990 and 2000 was composed of packages of interventions based on the level of income of countries, failing to address the actual needs of people affected by TB. This is completely unacceptable, and I am happy this is changing now,” Dr Ditiu continued.

“Today, we have unprecedented evidence of the often-overlooked challenges faced by people affected by TB, which we hope will serve as a wake-up call to everyone invested in the fight to end this disease.”

Despite considerable diversity among the issues identified across the 20 countries that carried out CRG assessments, there is a significant overlap of shared challenges, namely:

  • In 18 countries surveyed (90%), people affected by TB experience stigmatizing and discriminatory treatment in health care, both for TB care and primary healthcare settings.
  • In 15 countries (75%), people affected by TB experience employment discrimination. Yet, 19 of these countries (95%) fail to explicitly prohibit such discrimination in law.
  • Findings in 18 of the countries (90%) highlight various privacy concerns, including breaches in confidentiality, that deter the use of TB health services.
  • In most countries, patriarchal norms negatively impact women’s access to TB health services and increase their vulnerability to TB infection and disease.
  • Women affected by TB also experience more frequent or more intense stigma and discrimination than men in their families and communities, sometimes leading to emotional and physical abuse, divorce or abandonment.

The CRG assessments, as summarized in this figure, also exposed the critical need to ensure that people affected by TB meaningfully participate in all parts of the TB response, from the design and delivery of services through to their monitoring and review.

The assessment findings also highlighted the low number of civil society and community groups working on TB, their limited influence, and the lack of financial and other support available to them.

“We need to do for TB what strident activists did for HIV more than 30 years ago,” added Maurine Murenga, Global Fund Communities Delegation. “It’s time to get angry and noisy to ensure that the voices of communities affected by TB are heard loud and clear by policymakers, governments, donors and drug manufacturers around the world.”

To focus the TB response on communities, rights and gender, the Stop TB Partnership recently launched round 11 of its Challenge Facility for Civil Society (CFCS).

With US$9 million available for grants, it is the largest round yet. Over the past 15 years, the CFCS has grown from US$700,000 to $9 million in yearly funding to help TB-affected communities and civil society organizations promote and protect human rights and gender equality. Despite the steady increase in funding still, only a quarter of the funding needs are met.

Out of the 90 countries with either high burdens of TB and HIV coinfection or multidrug or rifampicin-resistant TB, more than 30 have yet to conduct a CRG assessment.

Tuberculosis High Burden Countries in the World

The Stop TB Partnership calls on all countries to complete such assessments and then develop and fund national Action Plans to mitigate, overcome and eliminate human rights and gender-related barriers to TB services—including stigma and discrimination.

In 2020, the Stop TB Partnership even recommended that completed such assessments and action plans be prerequisites for countries to obtain grants from donors like the Global Fund. 

“Too often, people with TB are forgotten and neglected, and so are their rights,” added Ani Herna Sari, TB Survivor and Executive Director, Rekat Indonesia. “Attention to TB and human rights, including stigma and discrimination, is essential. But beyond attention, we need elevated financial resources. Without a fully funded TB response, this airborne disease will continue to kill more than 4100 people every day—and everyone should feel accountable for this.” `

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