Statement on Racial Justice, Human Rights and Tuberculosis
Racial injustice, human rights violations, stigma and approaches that ignore community needs have long been unaddressed undercurrents of the TB epidemic, which takes 1.4 million lives a year, mostly in low- and middle-income countries. Protests against racial injustice in the United States and abroad – as well as the disproportionate impact of COVID-19 on Black, Brown and Indigenous people – have laid bare the inequities, structural violence and racism that underpin our societies and health systems. In order to achieve meaningful progress against TB and other epidemics, we must fight against the notion that diseases mainly impacting communities of color and those living in poverty are less deserving of the world’s time, attention and funds. We must stand for upholding the health, dignity and livelihoods of people affected by TB everywhere.
While racial injustice as a driver of TB inequities has been well documented throughout the history of the epidemic, in particular national contexts, actions to address the impact have been inadequate. For example, data presented at the 2017 Conference on Retroviruses and Opportunistic Infections (CROI) showed that Black communities and communities of color in South Africa suffer from higher rates of TB compared to even the poorest of white communities. That same year, a cover story by Harper’s magazine investigated an ongoing TB outbreak in the “Black Belt” of rural Alabama, revealing that rates of TB in Perry county, which is predominantly Black, are 100 times higher than rates in India and Haiti.
Yet years later, these stories have still not catalyzed the necessary resources – both domestically and globally – to address TB thoroughly, including in communities of color. Funding increases to USAID’s TB program have been piecemeal, while the CDC’s domestic TB program remains flat-funded. The lingering effects of racism, such as segregation and medical mistrust, allowed the TB outbreak to continue unabated in Alabama since the first cases were reported in 2014.
Throughout history, affected communities have often taken it upon themselves to address racial inequities and gaps in the TB response. Black public health researchers in the U.S. have advocated for policies that would improve working and housing conditions in order to reduce TB rates among African American communities in urban centers. The Young Lords, a civil and human rights organization, created community health projects for poor Latinx neighborhoods, conducting door-to-door testing for TB in New York City’s Bronx borough. Nearly a century ago, the Black women-led Women’s Improvement Club of Indianapolis pioneered efforts in deeply segregated conditions to open a sanatorium for TB patients. These are just a few examples of how TB has persisted in a vacuum of political attention, resources, and urgency, and how in many cases communities have risen to the challenge themselves.
We must do better, and we can start by shifting the burden off of impacted communities. Our TB response efforts must be centered around rectifying the social and structural injustices in the context of TB and bolstering the human rights and voices of vulnerable groups. We should start by implementing the specific policy recommendations that have been made by TB-affected communities. This includes prohibiting, in law and policy, all forms of discrimination against people affected by TB, including but not limited to, health care, employment, education, housing, family and detention settings. Programs should implement the Declaration of the Rights of People Affected by TB, a tool that Justice Edwin Cameron, formally of the Constitutional Court of South Africa, described as “assertive, expressive, dignified…(and) unparalleled in a world grappling with TB.”
The profiles in this report demonstrate the remarkable progress made by public health programs against TB, while also showcasing the importance of empowerment, leadership and social protection as a key strategy to ending the epidemic. Reversing decades of systematic oppression takes bold and ambitious policymaking, as well as adequate resources to address human rights, systemic racism and legal barriers to care.
Addressing human rights abuse, especially racial and other forms of injustice, is critical to breaking the persistent stranglehold TB has had on vulnerable communities for years, and to delivering on the promise of the historical investments and scientific advances made to date. Marginalized communities have shown what it takes to undo interlocking oppressions related to TB, in varying global and national contexts. It is now time for policymakers to take the next step.