Human Beings Left to Rot - The Tuskegee Syphilis Study

Between 1932-1972, several hundred black American men were observed to collect information on the effects of untreated syphilis. Life-changing treatment was deliberately withheld from them by the US government for decades and they were made to suffer the results of this debilitating disease without respite; and they never even knew what was happening to them.

This article is being published as part of Black History Month 2022. It's important to amplify and to listen to black voices at all times, and to see history as context both to celebrate black culture and challenge racism wherever it exists. Check out BlackHistoryMonth.org.uk to read more.

Before we explore the events and failings of the Tuskegee Syphilis Study, it’s important to understand the disease at the centre of this story. You might remember it from sexual health classes, or as the condition that killed famous Chicago gangster Al Capone. But what is syphilis, how dangerous are the effects on the human body and how do we treat it?

What is syphilis?

Syphilis is a (usually) sexually transmitted disease, caused by the bacteria Treponema pallidum, which looks like this:

Image sourced from Drug Target Review ©

This springy microbe is an enemy to humans only; it’s not found (naturally) in any other organism and, until 2018, wasn’t even cultivable in vitro (Edmonson et al. 1). This means scientists couldn’t grow the bacteria in Petri dishes in the lab, in this case because of T. pallidum’s sensitivity to its environment.

The stages of syphilis

• Primary: The first sign of syphilis is a small, painless, red sore (“chancre”) at the infection site (usually the penis, vulva, anus, rectum or mouth). This sore typically heals after 3-6 weeks, regardless of treatment, through an immune response called DTH (delayed type hypersensitivity).

• Secondary: Infected patients will find a rash on the palms of the hands, soles of the feet or elsewhere, usually not painful or itchy. There are several other possible symptoms, which you can read about here. Again, symptoms will disappear with or without treatment, but this does not mean that the body has cured itself or eliminated the T. pallidum infection.

• Latent: In this context, the word latent means the infection is lying dormant and symptomless, waiting to develop to the tertiary stage. At this point, syphilis is only detectable through serological testing; this means blood tests for antibodies, either specific to T. pallidum proteins (treponemal) or not (nontreponemal).

• Tertiary: The final stage of syphilitic infection, this only develops in ~ ⅓ untreated patients. Tertiary syphilis is very harmful and can affect many different organ systems, sometimes resulting in death. Interestingly, there is a relatively small population of T. pallidum bacteria in the body at this stage and the disease is no longer contagious.

The damage done to the body is actually the result of a severe immune response. This is when one would typically observe cardiovascular syp. (damage to the aorta) or late neurosyp. (spinal cord damage, loss of coordination/sensation and even paralysis).

Treatment

Fortunately, the simple and widely available penicillin G is the preferred drug for treating patients in all stages of syphilis. There’s a breakdown explanation of how antibiotics work coming to this page soon, but simply we can say that penicillin interferes with the production of a compound class called peptidoglycans. Peptidoglycan is part of the cell wall, a defensive and structural layer around the outside of bacterial and plant cells. We can think of peptidoglycan like the mortar or cement that holds a castle wall together: if penicillin gets involved and stops the cell from making good cement, the wall will be weak and easy to knock down. Similarly, the bacterial cells will be more vulnerable to attack by the human immune system if peptidoglycan production is compromised.

Penicillin can treat syphilis at any stage but it can’t reverse or heal damage done to the body during the infection, which is why early diagnosis and treatment is vital.

Congenital Syphilis

A final noteworthy point is the awful consequences of syphilis passed to a fetus by a mother infected with T. pallidum, before or (more likely) during pregnancy. The effects of early congenital syphilis (usually present at 3-14 weeks old) and late cong. syp. (5 years+) can be devastating to a child’s quality of life. These can range from anaemia or pneumonia to physical and/or mental mis-development. In the UK, pregnant mothers are routinely screened for syphilis, HIV and Hep B.

The Tuskegee Syphilis Study

Now that we have some understanding of the dangers of allowing syphilis to persist untreated, we are equipped to understand the negligence and mistreatment of the TSS patients.

The Study began in Macon County, Alabama, USA in October 1932. It would be fruitless to try to give full context as to the daily lives of black Alabama residents in this era, but it’s important to touch on their relationship to education, healthcare and the societal wealth structure. A majority of the African-American population in the county were farmers, working as sharecroppers on land owned by the rich, white minority. Access to (and the requisite education for) the ledgers and records was denied and unreasonable interest rates on borrowed farm equipment were set by the white landowners. This imposed a vicious cycle of debt and forced labour on the sharecroppers, meaning they could never save disposable income to leave and buy land of their own.

The white landowners’ demands to farm time-intensive cash crops meant that children were often removed from school at an early age to increase productivity. Of course, segregation maintained a chokehold on education, with white children receiving 10x the spending per student that black children did in Macon County (MC hereafter) in 1934 (Norrell 2).

The healthcare situation for the black MC population was just as dire. Nutrition levels were very poor and the rural population distribution was a significant obstacle to physicians’ care. Fred D. Gray, an Alabama legislator, civil rights activist and preacher, points out that the poorest white Alabamians shared these latter factors, although they represented a much smaller proportion and didn’t “carry the additional burden of legalized segregation” (3). He asserts that only a handful of the 623 men unknowingly involved in the study would ever have been treated by a doctor prior to their recruitment. This lack of previous opportunity for medical treatment almost certainly played a role in encouraging participation in the program offered to the eventual subjects of the study.

The Beginning

Through a collaborative 1930 government/philanthropic (Public Health Service and Rosenwald Fund respectively) program to expand medical services to poor, rural areas of the American South, Macon County was identified as an area rife with syphilis. A shocking 36% of those tested returned positive results (Gray 4). By 1932 the Great Depression had seen funding dry up, but local PHS doctors saw the endemic spread of the untreated condition as an opportunity.

As we established earlier, the TSS participants had no idea that they even had syphilis. “They were not told that they were to be involved in a study, no written consent was requested or given.” (Gray 5). So what did they think was going on?

Such was the significance of free healthcare to these men, little explanation or inducement was needed to recruit them. Thousands of blood tests were conducted across the county in 1932-33 to find a large enough group of age-appropriate syphilitics: of 4,400 people screened, 990 tested positive and 408 fit the parameters (males aged 25 and over). Whenever the doctors arrived at the churches, schools or other locations there would inevitably be a crowd awaiting them. Eunice Rivers, an African-American nurse hired to “personify the Study to the […] men who became involved” (Gray 6) later said the hope of receiving any kind of medical treatment was a novelty.

In this earliest stage, the study was enacted with a recognisable desire to aid the overall human contention with a seriously problematic disease. Firstly, it’s important to note that prior to the first treatment of syphilis with penicillin in 1943 (Gelpi and Tucker 7), there was no effective cure for the disease. Toxic heavy metal injections of mercury or arsenic had sometimes been used but a Norwegian study (Bruusgaard 8) questioned the cost vs benefit of these potentially harmful treatments. Additionally, the state health officer and director of the Alabama Board of Health Dr. J. N. Baker insisted that all syphilitic patients involved be given at least “minimal treatment” with the aforementioned heavy metals after the conclusion of the study. At this point, it was planned that this conclusion would be reached in 6-8 months. As Gray puts it:

“One can appreciate both the scientific zeal and humanitarian instincts of those who originated the TSS at a time when there was no simple solution to what amounted to a pandemic among certain population groups” (9)

We can surmise then that, at the point of conception, the Study was not an historic evil waiting to happen. However we must reiterate that 100% of the subjects were black, as well as the ethical malpractice regarding consent. When the initially planned time frame came to a close, PHS officials began to argue for the decision that would condemn these men to their fate: to continue the Study indefinitely.

Horrors Exposed

Even during the initial time frame (Oct 1932 - May 1933), medical misconduct occurred. In order to observe neurosyphilitic symptoms, unanaesthetised spinal taps were carried out. This involved a three-inch needle being inserted into the lumbar regions of the spine to collect spinal cord fluid. The intense pain from this procedure greatly distressed the men and Nurse Rivers later attested that it was “a very, very cruel thing to do.” (Gray 10)

Later, when penicillin had been established as an effective treatment for syphilis, the organisers of the study went to disgraceful lengths to ensure that their cohort of infected individuals was not compromised. Lists of the patients’ names were circulated to local doctors to ensure they would not ‘accidentally’ be treated for their debilitating condition. One man, Herman Shaw, later told his story of being removed from a treatment facility in Birmingham, Alabama. A group of men had been transported there as part of a public health drive to treat syphilis across the state and were awaiting examination and prescription, but at the last minute he was identified as a participant of the Study and withdrawn (Gray 11). Of course, no explanation was offered as he was sent home on the bus to Macon County.

The contrast in Herman Shaw's story is perhaps the best illustration of the depth of the inhumanity shown to the participants: a scourge deemed damaging enough to warrant a state-wide governmental health program was forced upon these men for decades with every effort made to deny them relief. However, the most damning indictment of the American healthcare system’s attitude to black citizens during this period may be the broader tolerance for the study. Findings from the physical examinations were published in 1936, 1946(2), 1950 and 1964 and Gray says “Medical journals had been publishing periodic reports, presumably read by thousands of doctors and medical researchers, for these three decades.” (12).

It wasn’t until 1950 when the first evidence of ethical questions being raised appeared. A speech given at a veneral disease conference, then a letter to the PHS in response to the 1964 report on the Study. These were met with internal apathy and external silence. Even after one Peter Buxtun, a venereal disease investigator for the PHS in San Francisco wrote to the head of the VD Division in 1966 and 1968, a conference of local physicians deemed there was “merit to continuing the study” (Gray 13) without treating the men. After unsatisfactory responses to his reports, which compared the Study to Nazi medical experiments at the Dachau concentration camp (Gray 14), Buxtun resigned his job and eventually blew the whistle. He wrote to an Associated Press reporter in 1972, the Tuskegee Syphilis Study became a national news story and the writing was on the wall.

One final misery to note (although truthfully there are too many to list here) is the failure of the U.S. Public Health Service to acknowledge to the erstwhile oblivious participants what had been going on. As soon as the day after reporter Jean Heller’s story broke, various medical bodies, hospitals and personnel began to distance themselves from the project. Despite this, it was only after a Montgomery reporter tracked down Study subject Charlie Pollard that these forsaken men finally started to learn how their government had betrayed them. Pollard approached Fred D. Gray to enlist him as an attorney and the latter immediately began working on a lawsuit that would last until 1975.

Aftermath

The eventual settlement from the lawsuit was around $10 million dollars, divided between the 408 untreated syphilitic men and the initially uninfected 215 control subjects (although some of these did go on to contract the disease independently as the study progressed). In many instances these men had died long before the end of the Study, in which cases the money awarded passed to their surviving family.

25 long years after the Tuskegee Syphilis Study concluded, President Bill Clinton made a formal apology to the 523 participants on behalf of the United States government. Although even this process was largely carried out without the consultation or involvement of the remaining men, Gray says that those alive to receive the apology “humbly and respectfully accepted [it] and forgave the government for its misconduct”. Crucial to those families devastated by the wilful harm caused by the government, Clinton acknowledged that the Study was clearly racist and would not have been imposed upon white people.

Statement from the writer

The Tuskegee Syphilis Study is part of a pattern which has continued into very recent US history of ethnic minorities, particularly African-Americans, being subjected to inhumane medical practices. This leaves a damaging legacy, not least in lingering mistrust of medical authority. This was one explanatory factor given for a reluctant uptake amongst BAME communities for the COVID-19 vaccines in 2021 and afterwards. My intention is to bring attention to a disgraceful and poignant story of unethical scientific practice. If you want to read more about this topic, TSS: The Real Story and Beyond by Fred D. Gray (acclaimed civil rights activist, lawyer and author) and Bad Blood by James H. Jones are good resources.

Bibliography

(1) Edmondson, D. G. et al., "Long-Term In Vitro Culture Of The Syphilis Spirochete Treponema Pallidum Subsp. Pallidum". Mbio, vol 9, no. 3, 2018. American Society For Microbiology, https://doi.org/10.1128/mbio.01153-18.

(2) Norrell, Robert J. Reaping The Whirlwind: The Civil Rights Movement in Tuskegee. Alfred A. Knopf, 1985.

(3) Gray, Fred D., The Tuskegee Syphilis Study: The Real Story and Beyond. Newsouth Books, 2003, p. 36.

(4) Gray, Fred D., p 42

(5) Gray, Fred D., p. 50

(6) Gray, Fred D., p. 45

(7) Gelpi, A., and Tucker J. D., A Cure At Last? Penicillin's Unintended Consequences On Syphilis Control, 1944–1964. Sexually Transmitted Infections, vol 91, no. 1, 2015, pp. 70.1-70. BMJ, https://doi.org/10.1136/sextrans-2014-051781.

(8) Bruusgaard, E. Über Das Schicksal Der Nicht Spezifisch Behandelten Luetiker. Archiv Für Dermatologie Und Syphilis, vol 157, no. 2, 1929. Springer Science And Business Media LLC, https://doi.org/10.1007/bf01959543.

(9) Gray, Fred D., p. 33

(10) Gray, Fred D., p. 52

(11) Gray, Fred D., p. 60

(12) Gray, Fred D., p. 75

(13) Gray, Fred D., p 72

(14) Gray, Fred D., p 76