The Story of Tuberculosis

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As with many stories of disease in the 18th and 19th centuries, tuberculosis was weaponized to divide and conquer communities based on race, class and post-Civil War geography. The care infrastructure that was built in the U.S. to address tuberculosis created a huge, inequitable gap between the “haves” and “have nots,” between the North and South, and between wealthy white and Black, Indigenous, and poor immigrants during the post-Reconstruction Era. Poverty, white supremacy, and Jim Crow Laws all contributed to the wide reach of this infection. This story will explore how African American communities were left behind to die, and how they responded, resisting these inequities steeped in a racial capitalist system of health.

Tuberculosis, also known as consumption, the wasting disease, or the White Plague, was brought to Turtle Island during colonization. Tuberculosis is caused by the organism Mycobacterium tuberculosis. Results of a study of the tuberculosis genome in 2014 suggest that human tuberculosis is less than 6,000 years old (Zimmer, 2014). It is known to have spread along trade routes in Africa and passed on by infected animals such as goats and cows. Tuberculosis is a serious bacterial disease that mostly impacts the lungs. Symptoms can include coughing (sometimes with blood), night sweats, fever and weight loss. Highly contagious people often carry the bacteria unknowingly and then spread the disease through a cough or sneeze. Until the invention of antibiotics, there was no clear treatment for tuberculosis, and the disease spread in epidemic proportions. This was particularly true in the late 18th and early 19th centuries, as the rise of city populations increased the possibility of widespread exposure.

In 1882, the bacteria tuberculosis bacillus was discovered by Robert Koch, M.D., a bacteriologist working at the Imperial Health Bureau in Berlin. Prior to his discovery, many believed tuberculosis was hereditary, not contagious. In 1885, Koch was appointed Professor of Hygiene at the new Institute of Hygiene at the University of Berlin, where he attempted to cure tuberculosis but was unsuccessful. While bacteriologists searched for an antibiotic, medical professionals and laypeople in the U.S. began to organize an Anti-Tuberculosis Movement, which was rooted in ideas of cleanliness and hygiene. 

These concepts of cleanliness and hygiene were often defined by cleansing the “impure” and “sinful,” terms which were code for Black, Indigenous, disabled, and poor European immigrants. The Anti-Tuberculosis Movement, led by and centering white wealthy communities, officially began with the founding of the Pennsylvania Society for the Prevention of Tuberculosis in 1892 and was followed in 1904 with the unveiling of the National Association for the Study and Prevention of Tuberculosis.

The National Association strengthened the movement to fundraise for the research and prevention of the spread of the disease. In naming strategies to prevent the spread of tuberculosis, leaders in the Association sometimes expressed concern for the health of the European immigrants settling in northern urban settings, but very rarely expressed the same concern for Black and Indigenous communities in the rural South, where the highest rates of tuberculosis were appearing. This racist exclusion created wide gaps between how the immigrant communities in the North and Black, Indigenous, and poor white communities in the South were treated and cared for.

The Anti-Tuberculosis Movement focused on creating a system of care and treatment for tuberculosis by: 1) building sanatoriums, specialized hospitals for specific diseases often located in rural areas far away from population centers; 2) forming anti-tuberculosis societies; and 3) building a public health program to control tuberculosis that was guided by the belief that race and class were the root causes of the disease. 

Anti-tuberculosis movements emerged during the time period when moral and religious understandings of illness were evolving into medical models of disability and illness (see the Story of Disability Justice for more on this). The first wave of the Anti-Tuberculosis Movement focused almost completely on addressing what was perceived as the moral basis of the disease. Perceptions of race, ability, class, and religion were used to determine who was considered guilty of spreading infection and who was not. Anti-tuberculosis advocates then looked to change those perceived as the most culpable. The federal government gave no financial support to address the disease itself in many communities, but rather funded assimilation or cultural destruction strategies. Rather than supporting a broad-based tuberculosis response and the livelihood of communities, the federal government decided to send money to support the Christianization of Alaska and discourage traditional cultural practices, ignoring the high tuberculosis rates entirely. Their commitment to forced assimilation at a time when ending tuberculosis should have been a priority shows that the federal government viewed Indigenous Nations’ cultural heritage as the greater threat to the health of the nation than tuberculosis and other infections.

When resources were dedicated to the treatment of tuberculosis, the Anti-Tuberculosis Movement focused on services for white wealthy people, even though Southern Black communities were the hardest hit by the disease. Black communities did not receive services through anti-tuberculosis funding and continued to be casualties of inaccessible care. “At the turn of the century, the nation’s nine million Black people, concentrated mostly in the rural South before the Great Migration north, were segregated and impoverished under the Jim Crow system, and their annual mortality from tuberculosis was well over three times the rate [of white communities]” (Torchia, 1975).  

The first sanatorium, a public institution for whites only, was founded by Doctor Edward Trudeau in 1884. The sanatorium was developed with the belief that fresh air and sunlight were cures for tuberculosis. Many early sanatoriums were essentially luxury spas for the white and wealthy, who had the capacity to plan long retreats away in the countryside. These institutions of care were not accessible to the poor, Black, Indigenous, and European immigrant communities experiencing the highest rates of infection. This further entrenched the chasm between the care that was provided to different communities, specifically excluding poor and Black people. By the 1900’s, Black folks had a fifty percent chance of contracting tuberculosis (Torchia, 1975).

As germ theory emerged, the understanding of how infections spread shifted, calling into question the notion that race correlated to rates of infection and illness. Germ theorists began to name infection as race-neutral, resulting instead from people’s proximity to each other and the resulting exposure to germs. This could have been a moment of intervention against the inequality of care infrastructures for Black and Indigenous communities, but the opposite occurred. The racial segregation of healthcare in the American Southeast increased rather than decreased, holding firm to the white supremacist idea that Black people were unclean and diseased, and therefore needed to be separated in order to preserve the well-being of the wealthy white elite. 

Resistance in the 20th Century

Despite the overwhelming lack of resources available for Black communities during the rise of tuberculosis, there was still the presence of resistance, possibility, and hope. Lugenia Burns Hope, along with eight other Black women, took matters into their own hands by founding the Neighborhood Union in Atlanta in 1908 in response to the white-only led Anti-Tuberculosis Movement. The Neighborhood Union focused solely on advocating for Black communities. They fought for school improvements and neighborhood sanitation programs, and opened a Black settlement house and health clinic to provide programming on parenting and elder care. The original Neighborhood Union inspired the proliferation of hundreds of similar groups, and scores of these Black women-led clubs sprung into existence around the country.

Other programs soon followed. In 1906, the Consumptives Hospital in Boston was established to meet the needs of poor white and Black patients living with tuberculosis. The white physicians at the Consumptives Hospital critiqued sanatoriums for not addressing the social and root causes of tuberculosis and, in particular, for not addressing the needs of those communities most susceptible to the rise of tuberculosis rates, particularly poor Black, Indigenous and immigrant communities. These physicians called out the impact of the lack of care and in particular addressed what this could mean for the survival of those Black communities hit hardest by the disease. In the South, change also started to emerge. Anti-tuberculosis organizations became the first organizations to begin to racially integrate, as they looked for ways to prevent the disease from spreading across both Black and white communities. Yet as integrated care began, Black and white patients did not receive equal qualities of care. In many integrated Southern hospitals, Black people still experienced a significantly decreased quality of care.

With the popularization of germ theory, medicine began to change how it understood infections and race, recognizing that germs shift between all human bodies. But as we have seen time and time again, white supremacy is relentless and shape-shifts so that it can recenter itself. The rise of the American Eugenics Movement began to assert the need to “sanitize” the poor and made the case that a healthy nation is a nation where the “undesirables” are removed or “bred out.” “Undesirables” was code for disabled, Black, Indigenous, poor, and immigrant communities, seen by eugenic thinkers to be inherently more diseased, and therefore a threat to the “pure” nation. 

At the height of the 20th century, in this period of shifting understandings of infection and health, two Black intellectual leaders, W.E.B. Du Bois and Dr. Booker T. Washington offered analyses and strategies for confronting the racial inequalities in the response to tuberculosis. In 1906, Du Bois published The Health & Physique of the Negro American, naming tuberculosis as "not a racial disease but a social disease," (DuBois, 1906) and challenging the conditions of Jim Crow Laws and segregation as barriers to affordable, dignified and equitable healthcare. His work also directly attacked - and debunked - the myth of Black people as being inherently “diseased.”

At the same time, Booker T. Washington began Negro Health Week, a program to teach formerly enslaved Black people in Tuskegee, Alabama (who were now mostly sharecroppers) how to improve their living and health conditions. The Negro Health Movement, the first public health campaign in the U.S. designed by African Americans, was created at the same time. The Movement lasted from 1915 to 1950 and was modeled after Margaret Murray Washington’s Tuskegee Woman’s Club.

Washington, co-founder of the National Association of Colored Women in 1896, had “created the Tuskegee Woman’s Club…to work with women in improving their homes by giving advice on basic hygiene and sanitation that they could implement with little cost” (Braff, 2020). Booker T. Washington essentially co-opted this program when he founded the National Negro Business League (NNBL) to work with Black business men in the rural South to promote Negro Health Week. NNBL members provided basic hygiene and sanitation tips for Black people to use in their homes. They believed that the Black community needed more agency in improving their own health conditions, without needing - or often having -  access to medical professionals.  

Meanwhile, many white medical professionals and lay people still blamed the Black community for high tuberculosis infection rates. This became evident at the American Public Health Association Conference in 1914, when the legitimacy of the National Negro Health Week Campaign was directly questioned, and rates of tuberculosis were described as the result of the “ignorance and poverty” of Black folks. This was countered by Du Bois and others who named the abhorrent conditions of segregation and healthcare inequity as a result of Jim Crow Laws.

In 1915, Robert Moton, Booker Washington’s successor, received support from the national Public Health Service to launch the National Negro Health Week. With the involvement of the government’s Public Health Services, National Negro Health Week focused on providing vaccinations and setting up medical and dental services at a low-cost in Black communities. When this happened, the campaign's messaging shifted from a focus on Black people relying on themselves for care to “describing how much people need physicians to obtain good health” (Braff, 2020). This destabilized existing structures of Black collective and interdependent care, and created a reliance on state public health institutions for African American communities' well being. This National Negro Health Week strategy created a powerful contradictory dynamic of encouraging Black communities to rely on state-led programs for “better care” while at the same time those same state-led health systems were (and remain today) highly discriminatory.

It is important to note that during this period of great cultural shifts, the first Black treatment facility in the nation for tuberculosis opened in 1918 in Virginia. It was founded by the State Board of Health and the Negro Organization Society, and called the Piedmont Sanatorium. The Piedmont Sanatorium, based in Burkeville, Virginia, treated hundreds of African Americans from  1917 to 1965, later becoming the site of Piedmont Geriatric Hospital.

As time moved on, the U.S. Public Health System continued to co-opt National Negro Health Week. In 1931, the Public Health Service hired Doctor Roscoe Brown, a leader in the Negro Health Movement, to fully integrate the Health Movement’s strategies into the U.S. public health system by creating educational materials modeled after the movement’s own materials. Doctor Brown trained as a dentist and devoted much of his work to creating curriculum and teaching hygiene and healthcare within Black communities. Brown’s decision to move his educational materials into the national public health system shifted the focus of his work from being led by Black communities to being led by state systems. As health education in Black communities became funded and directed by the state, the opportunity for Black community members to reflect on or critique how the materials were disseminated diminished. This compromised the Negro Health Movement’s capacity to critique public health programs and advocate for Black communities from an outsider’s position. In 1931, after 30 years of Black people demanding it, the National Tuberculosis Association created the Committee on Tuberculosis Among Negroes. Jointly funded by the Rockefeller and Rosenwald Funds, the Committed established a five year study of tuberculosis, focusing particularly on the Southern United States. “The Black-led committee asserted that tuberculosis rates and overall Black health struggles were a result of social conditions and not inherent to Black people. They called for education and systems that support the improvement of Black life as a strategy to increase health and wellness” (Torchia, 1975).

Despite a growing awareness of germ theory and a proven analysis that tuberculosis was a disease spread by contagion, not genetics, many white care workers and white nurses continued to identify tuberculosis as a Black people’s disease. Black doctors, such as at the Lower Harlem Chest Clinic in 1939, called for "research to disprove this, arguing that care for Black patients is about forty years behind care for white patients due to racism and poverty” (Torchia, 1975). This was the same argument made forty years previously by W.E.B. Du Bois. In response, White nurses began a mass refusal of care for Black patients. Out of this emerged another cultural shift in the shaping of Black care work. 

In 1928, the Rosenwald Fund, founded in 1917 by Jewish philanthropist, Julius Rosenwald, committed itself to funding “Negro” hospitals and training up Black doctors and nurses. The fund created a training program for 200 Black nurses in the North to provide care in the South. It also created other fellowship programs for Black care workers to become involved with the Negro Health Movement. This established a Black nursing response to the problem of racist white care. When white nurses refused to treat Black patients with tuberculosis, Black nurses were able to replace them. Over 300 Black Nurses volunteered to come to Seaview Hospital in Staten Island, New York after white nurses refused to care for  Black patients. These nurses, predominantly from the South, became known as the “Black Angels” because they cared for those left behind. While they provided care for Black communities pathologized and unseen, they also endured intense hospital care segregation and racial discrimination in the North. 

New treatments for tuberculosis were continually being developed during this time, often without adequate consent. In 1934, Carl Erickson & Mike Schmidt, two Black men who were incarcerated in a Colorado prison, were selected to participate in a tuberculosis study. They were told that if they participated, they would be given early release and allowed to return home. Both men agreed and were brought in to test a tuberculosis vaccine at Denver's National Jewish Hospital. Carl Erickson reflected, “I don’t want to die, I volunteered to help so I could get out of here." Schmidt grew quite ill as a result of the new vaccine but recovered. Both men survived the test and were released. The ethics of this kind of “voluntary” testing was decried at the time and continues to be called out today as exploitation in the Prison Industrial Complex for the purpose of profit. While mandatory involuntary research might be illegal, offering testing as a trade for fewer years of incarceration still exists today, maintaining an unjust system that continues to use incarcerated people’s bodies as testing sites for disease research. 

In the 1940s, as new vaccines were developed and antibiotics continued to emerge as viable treatments for tuberculosis, infection rates began to decline. This decline continued until a resurgence of tuberculosis in the 1990s. In 2000, a report called “Ending Neglect” offered a cohesive national strategy for eradicating tuberculosis in the United States. This strategy focused on a combination of public health education, health tracking, and treatment protocols. Since this national strategy was launched, tuberculosis rates have almost halved in all communities, and yet still, Black communities are the most impacted by this infection. It takes time to recover from the historical impact of the racist beliefs and white supremacist ideologies that labeled Black bodies as “impure and diseased” and the unequal or absent healthcare and support that shaped generations of wellness in Black communities. This pattern in disease interventions and their impact has been repeated over and over again, creating disparities between people who are able-bodied and disabled, between People of Color and white people, and between those who are poor and wealthy. It will take generations of respectful and dignified care to shift the impact of the harm of the generations that came before.

Sources Cited

*see the Tuberculosis timeline for additional sources

Braff, (2020) ENTHRONING HEALTH: THE NATIONAL NEGRO HEALTH MOVEMENT AND THE FIGHT TO CONTROL PUBLIC HEALTH POLICY IN THE AFRICAN AMERICAN COMMUNITY, 1915-1950 https://scholarshare.temple.edu/handle/20.500.12613/4773

DuBois W. E. (1906). The health and physique of the Negro American. 2003. American journal of public health, 93(2), 272–276. https://doi.org/10.2105/ajph.93.2.272 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1449799/

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TORCHIA, M. M. (1975). THE TUBERCULOSIS MOVEMENT AND THE RACE QUESTION, 1890-1950. Bulletin of the History of Medicine, 49(2), 152–168. http://www.jstor.org/stable/44450215

University of Virginia. (n.d.) The American Lung Association Crusade.  http://exhibits.hsl.virginia.edu/alav/

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Zimmer, C. (2014, Aug 20). Tuberculosis Is Newer Than Thought, Study Says. NYTimes. https://www.nytimes.com/2014/08/21/science/tuberculosis-is-newer-than-what-was-thought-study-says.html