Participants in the Tuskegee Syphilis Study, sourced via the National Archives and Record Administration on May 12, 2017. Photo Credit: Courtesy of the National Archives and Record Administration, #956126
Doctor drawing blood at "treatment visit", Tuskegee Study
U.S. Public Health System physician Thomas W. Murrell, M.D. (and Chief of Dermatology, Virginia Commonwealth University) advocated not attempting to eradicate syphilis in Black Americans. "So the scourge sweeps among them. Those that are treated are only half cured and the effort to assimilate a complex civilization drives their diseased minds until the results are criminal records. Perhaps here, in conjunction with tuberculosis, will be the end of the Negro problem. Disease will accomplish what man cannot do." (c 1930 From Medical Apartheid by Harriet A. Washington)
He was nowhere near the first American (or physician) to anticipate the extinction of Black Americans. After the 1890 Census, the first including one generation of free born Blacks, social Darwinism reigned. It postulated "weak, unhealthy Negroes" would be extinct by 2000, overcome by poor habits, poor health, disease, poverty and an assortment of presumed racial character flaws. Nor was he the first to suggest that public health measures, improved sanitation, housing, education and programs to relieve poverty (as were provided poor white immigrants) were wasted on racially inferior Negroes. Doctors generally discounted socio-economic explanations of the state of black health, arguing that better medical care could not alter the evolutionary scheme.
Sadly, the failure of national leadership during the early phase of the Covid pandemic appears to echo those sentiments. Centered in the New York Metropolitan region, the gross racial disparity in severe illness and deaths was apparent almost immediately. And the response was lacking in rigor and in vigor. How much inaction was racially motivated? Would the reaction have been so blase if the first victims had overwhelmingly been white suburbanites? We'll never know. But as the crucial vaccine trials have struggled to recruit a critical mass of the most severely affected minorities for testing, and suspicion of the medical establishment may impact vaccine acceptance, it is useful to review the history of medicine and Blacks in the US.
Many people cite the Tuskegee Study, officially titled The Tuskegee Study of Untreated Syphilis in the Negro Male, as a primary cause of distrust and health care discrepancies. They would like to blame Black suspicion and unfounded paranoia due to this one study for the discrepancies. While it is true that the Tuskegee Study is a well known and oft cited example of exploitation and maltreatment of Blacks by the medical establishment, distrust of doctors, medicine and hospitals in the Black community dates back, as so much else, to our arrival on this continent and slavery.
Next to the Captain, the highest paid on slave ships was the ship doctor or surgeon. It was he who was relied upon to choose healthy captives for the journey, he who was entrusted with the health (to the degree anyone was) of the captives in transit, he who decided who had communicable diseases, he who determined who was better off jettisoned overboard than infecting the others, he who prescribed exercise. "Physicians believed that exercise would help maintain the health of the slaves during the voyage. Africans would be required to exercise daily by dancing and, sometimes, singing. Those who refused were subject to whipping." The ships doctors carried their own "medications", which were relatively primitive, rarely curative, often damaging, and not consistent with the herbal healing customs of African tribes.
In fact, the state of African medicine was in many ways more advanced than Western, with some ideas and cures originating with ancient Egypt. Take smallpox, pictured below. (Only one boy was previously vaccinated.)
Those of us my age likely have a smallpox vaccination scar on a forearm or upper thigh, reminders that not so very long ago, smallpox was a highly feared, deadly contagious virus. Only in 1980 did the WHO declare smallpox eradicated through intense, worldwide inoculation campaigns. But in the colonial period, smallpox was such a scourge that when it arrived in Boston in 1721 with a shipload of passengers from the Caribbean, they were isolated in a house marked by a red flag, "God have mercy on this house", as Bostonians fled the city.
But Cotton Mather, a puritan minister (also an avowed, unrepentant racist, and instigator of the Salem Witch Trials), had been gifted with an enslaved African who had arrived in the colonies in 1706, probably from Ghana. He named his gift Onesimus, meaning useful or profitable, after the biblical slave. Finding him "a pretty intelligent fellow", Mather educated Onesimus in reading and writing. He asked Onesimus if he had had smallpox. Onesimus answered, "Yes and no," and went on to describe a process of inoculation performed on him, common in Sub Saharan Africa. "People take Juice of Small-Pox; and Cut the Skin, and put in a drop." He then showed his forearm scar to Mather. Mather believed disease was physical and spiritual punishment, but a cure he saw as God's providential gift, and a way to reestablish the primacy of religious figures in politics. He spoke with other enslaved people, and learned that the practice was also used in Turkey and China (in the 15th century!). In 1716, Mather wrote to inform the Royal Society of London of the method of smallpox inoculation. His advocacy of inoculation was met with mistrust, a mistrust fed by a prevalent fear that enslaved Africans were plotting to overthrow whites. Mather was ridiculed for listening to a "savage". However during the 1721 smallpox epidemic, one white physician first inoculated his 6 year old son and two enslaved, going on to inoculate 280 people. The death rate in those 280 was 2.2% compared with over 14% in those not inoculated, and the method won some begrudging acceptance. In 1796, a British physician, Edward Jenner, observing milk maid's relative resistant to smallpox, introduced inoculation as we know it, with cowpox. He is now considered the father of immunology, and one has to search to hard to find attributions to or recognition of Onesimus.
Onesimus was not a physician or healer, yet he knew what western physicians did not. Many kidnapped sub-saharan Africans had extensive knowledge of roots, herbal and natural remedies, and some were likely healers. Many enslaved preferred treatment from the fellow enslaved, and hid their illnesses until late in the course. Why? Physicians were engaged by owners, and there was no patient doctor relationship per se. Physicians were called, often when the situation was dire and the prognosis grim. They treated the enslaved at the behest of their owners, for the owner's benefit, with no regard to patient consent. One physician removed most of the lower jaw of an enslaved man with a tumor who had refused surgery. At his owner's behest, the enslaved man was physically restrained, and without anesthesia, operated on. He did recover, then ran away (labelled an ingrate), so nothing further is known of him. Less invasive medical treatments often included bloodletting, administering emetics, laxatives or poisons such as arsenic or mercury, the generally accepted wisdom of the time. Overworked, with poor diets and insufficient clothing and housing, these "treatments" were more toxic and deleterious to the enslaved than to well nourished, well rested whites. As a result, treatment not infrequently lead to death. It is no wonder that physicians were regarded with fear and suspicion.
A cautionary tale from Kentucky. Slave traders passing through Mitch McConnell's home state wanted to buy the new seemingly robust, fit mother, Herthena Rollins, but not the baby. Her owner, wanting to make the sale, beat the child to death in front of her. She began to have fits. According to Rollins, the fits stemmed from seeing her infant killed. But her new master refused to pay for medical treatment, and returned her to her original owner demanding a full refund. Later, Rollins could no longer talk about her early years. But a question remains, what would a physician have prescribed under the circumstances?
Painting of Dr. Marion Sims, assistants and enslaved, probably Lucy, Anarcha and Betsy
Physicians often experimented on their own enslaved, or advertised for the enslaved on whom to experiment. The fanciful painting (the enslaved women were naked) at the top of Dr. Marion Sims, the "father of gynecology," the poster doc for exploitation. He solicited enslaved women with a dreaded complication of childbirth, vesico-vaginal fistula (opening between bladder and vagina, leading to constant urine leakage), offering to pay for their upkeep. The condition, associated with malodor and recurrent infection, often meant these women were isolated, and less able to be exploited for work. Often a result of with obstructed labor, fistulae were more frequent in the enslaved who were expected to augment their owner's wealth by giving birth from puberty on, and whose poor diets contributed to inadequate pelvic bone development. Sims operated without anesthesia, though ether was in use at the time, stating that Blacks did not feel pain. The first year of his experiments, he hired 3 physician assistants, but all left by year's end, no longer willing to restrain the screaming women, or watch his often unsuccessful procedures. From then on, Sims used other enslaved women to restrain his subjects. Although he refused to use anesthesia, he did prescribe morphine liberally post operatively, thought as a means of control.
When Sims felt he had perfected his repair technique, he moved to New York City, and wrote articles for the medical journals, illustrated with images of respectable white matrons, disguising the origins of his technique. As his fame rose, he also became known for treatment of vaginismus, a painful muscle spasm of the pelvic floor which makes intercourse difficult to impossible. His treatment: anesthetize the women with ether, so their husbands could have intercourse with them out cold! The man who operated on Black women without ether felt white women needed it for sex!
He is only one of many who experimented on the enslaved, leaving a legacy of physical injuries, distrust and death. One could argue that the treatment of many poor minorities at underfunded, understaffed county hospitals today extends that legacy.
Physicians caring for the enslaved were encouraged to place liens on the "chattel property" if their bills were not paid. Old, sick, unproductive slaves were given to hospitals for "expert care", which more often meant experimentation and post mortem dissection. Therapeutically unjustified procedures were performed on slaves (ie leg amputation for an ulcer) merely to allow doctors to learn or practice such techniques, and to let students see the procedure. After an amputation performed on a 15 year old slave girl for a minor injury, the physician declared, “Decision to amputate should be made differently according to persons race and class. Though such an extreme measure is a horrible deformity that should be a last resort for a rich man, amputation the limb of a slave was a matter of relatively little importance.” (1)
In 1838, many lobbied for a new medical school in Richmond, Virginia, to rival Jefferson and University of Pennsylvania in the north. The draw, the large Black population: "As the dignity and sensibility of a black man are of no account and the health of slaveholders requires they should have good physicians, articles to be forthcoming only from a medical college where anatomical subjects are abundant, ergo a medical college ought to be established at Richmond." (1)
And how did physicians learn anatomy? Ironically, Black bodies. Despite denying the very humanness of Blacks, Black bodies were the staple of anatomy labs, obtained through alms house deaths and grave robbery. Segregated graveyards facilitated procurement of blacks only. The crime was so ubiquitous, those who stole the bodies were called "night doctors" or resurrectionists. More than once, Black"night doctors" caught in the act of stealing were prosecuted and convicted, though the professors who paid them were acquitted. Those bodies also became the skeletons, skulls, skins and organ displays for medical schools and doctors offices.
White physicians also described (invented) a number of medical conditions peculiar to blacks. Drapetomania, or the desire of enslaved Africans to escape, was described as a mental illness by Samuel A. Cartwright, M.D., for which he prescribed whipping or amputation of the great toes to cure. Drapetomania appeared in Stedman's Medical Dictionary as late as 1914. Cartwright also invented dysaesthesia aethiopica, another alleged mental illness, this "called by overseers rascality". Dull mindedness and insensitivity of the skin were its features, for which whipping was prescribed, after which the patient would "look grateful and thankful to the white man whose compulsory power ... has restored his sensation and dispelled the mist that clouded his intellect." Pellagra ( inflamed skin, on sun exposed parts, diarrhea, dementia, and sores in the mouth) was said to be a Black disease of sloth and poor hygiene, until changes in the production of corn lead poor whites to suffer from it, and a conscientious PHS physician, Joseph Goldberger, in 1914 revealed it to be a vitamin deficiency (niacin), a result of the poor diet given the enslaved, poor Blacks and whites.
White and Black pellagra patients.
Sadly, when freedom came, blacks did not fare much better. Fleeing toward Union camps as the Civil War raged on, at one point, over 400,000 self freed Blacks (labelled "contraband" of war, so confiscated, and not subject to re-enslavement) were in Union camps. They were assigned a total of 138 physicians (a ratio of about 1/2900), many of whom regarded their new potential patients as ignorant, filthy and diseased, and did not attend them. Crowded with inadequate sanitation, housing or food, one in four died, mostly of communicable diseases, with no one addressing or remedying the horrific conditions. Instead, their illnesses were ascribed to their inferiority, their sloth and lack of hygiene.
During reconstruction, though entire hospitals were given over to "the colored", the staffing and funding levels never allowed for adequate care. Once reconstruction ended, and white Redemption begun, separate and unequal became the law of the land, making discriminatory and unequal treatment the very foundation of medical care. Few physicians treated and fewer hospitals accepted Black patients. To make matters worse, an agricultural depression in the 1870's increased the economic disparity of the races, with worsening Black poverty and living conditions.
As teaching hospitals began (1900's, replacing short courses and apprentice) anatomic knowledge and hands on clinical experience were crucial, but hospitals were dreaded (as physician owned venues of learning and experiments). No one went voluntarily. So they were established for Blacks, to ensure a supply of patients for clinical instruction. Patients were expected to submit to experimentation in return for being treated in a charity ward, though even if Blacks could afford to pay, they would not be admitted to other hospitals. In teaching hospitals, Blacks were displayed as specimens, blunting sensitivity and altruism toward them as patients and students often became mocking and distainfull over the course of their studies.
Black bodies were exploited by more than physicians. PT Barnum exhibited an elderly, blind Black woman, Joice Heth, (1756-1836) as a 116 year old who had nursed George Washington, selling tickets to her public autopsy upon her death. Sarah Baartman, (1789-1815), a South African woman, was exhibited as the Hottentot Venus, with physicians and the public oogling, prodding and examining her due to her large buttocks. Ota Benga, (1883-1916) a Congo pygmy who returned from a hunting trip to find his village and family killed was captured and exhibited in the Bronx Zoo in the monkey house. All 3 met unhappy ends.
From the 1890's came the Progressive era extending into the 1920's, an age of great social activism and political reform addressing major changes in the United states: urbanization, industrialization, immigration and unbridled political corruption. The shortage of American workers (due to halted immigration) for the rapidly industrializing country after the outbreak of First World War, lead to The Great Migration of Blacks, from the south to the west and north for greater economic opportunity. However, these new arrivals were met with discrimination; lower wages than for whites and segregated into increasingly crowded, expensive, substandard housing. Many progressives saw issues of poverty such as poor health, maternal and child mortality and morbidity chronic illness even female prostitution as social ills from rapid industrialization when observed in poor immigrant communities. When observed in Black communities, the same ills were ascribed to the inferiority of Blacks, poor work ethic, poor hygiene and laziness.
The interesting conundrum, one that has been repeated throughout the course of American history, is the hypocrisy of changing views of Blacks to fit the economic and political imperatives of the day. During slavery, the common view was that Blacks were hearty, ideally suited to work in harsh and inhospitable climates and impervious to pain. After emancipation, Blacks were deemed too weak, lazy and delicate to survive.
Which brings us back to the Tuskegee Study. Initially planned as a treatment program to be funded by Julius Rosenwald (philanthropist, Sears Roebuck) in Macon County due to a high prevalence (36%, 61% of which was congenital) of untreated (99%) syphilis, the 1929 stock market crash wiped out his fortune and ended that hope. The Public Health Service stepped in, in the person of Thomas W. Morrell. He believed Blacks were "intellectual inferior, degenerate, impetuous, hypersexualized". He postulated that syphilis manifest differently in blacks and whites. In whites, central nervous system effects were seen, but he proposed that in Blacks, the cardiovascular system would be attacked, sparing their "unsophisticated nervous systems". So, why not save the expense of treatment, and study the course of disease in Blacks? In 1932, he enticed poor sharecroppers with "free assessments", routine "check ups", which included blood draws, spinal taps, and "treatment". Treatment consisted of vitamins, iron tonic and aspirin. Told the spinal taps were "special treatments"; the sharecroppers were unaware actual treatment was being withheld, or that they were participating in an experiment. "It is my desire to keep the main purpose of the work from the negroes in the county and continue their interest in treatment," wrote Clark, the chief investigator. The initial 2 year experiment was continued for 40 years, with the participants denied the treatments available in 1932, and denied penicillin when it was found to be curative in 1943-4 !! Of course, post mortem examinations were crucial, so patients were tracked, and enticed to return for care (to die) in a Black hospital if they strayed. Some men sought treatment elsewhere, but the PHS distributed their names on a "Do not treat" list, and on lists to the WW2 Draft Boards, instructing military physicians not to treat any men inducted. They were then exempted from the draft, because the PHS feared they would be treated in the military! (1) Nonetheless, about 8% of the study participants managed to obtain treatment in the 1943 National campaign to eradicate the disease. The PHS, from 1933 onward, regularly published their findings and presented papers detailing premature deaths, autopsy results, more cases of congenital syphilis, etc, including at the American Medical Association meetings with no objections! But of course, Black physicians were excluded from the AMA (and most medical schools) until the late 60's. And the CDC in 1965 and 1969 reviewed and chose to continue the study.
The end of the Tuskegee Study came thanks to a free press and Peter Buxtun, an exasperated Polish immigrant who worked as a venereal disease interviewer for the PHS. In 1965, he learned of the study, and demanded it be stopped. He was reprimanded. In 1967, he left PHS to attend law school, continuing to write PHS about the study. In 1972, frustrated by his inability to effect change, he told a journalist friend, Jean Heller, and she broke the story for the Associated Press. "Years later, Heller called the story "one of the grossest violations of human rights I can imagine". Her article exposing the unethical study was published in the Washington Star on July 25, 1972, and it became front-page news in the New York Times the following day. "
Harriet Washington's book (see below) reveals fascinating details including of the subsequent Congressional investigation (spoiler alert, sanctioned). Interestingly, the congressional committee travelled to interview all the staff involved in the study, but destroyed the tapes long before releasing their report. Who was being protected? It is easier to find the name of the Negro night nurse hired to be the face of the program than the physicians who devised and directed it (Dr. Taliaferro Clark, Chief of the USPHS Venereal Disease Division and Surgeon General H. S. Cumming). A 1995 Harvard Journal of Minority Public Health by Benjamin Roy, MD, proposes that the men, by providing a living reservoir for the bacterium, T. Pallidum, in years before scientists learned to culture cells, were used to develop new, more reliable and profitable tests for syphilis. Indeed, both the FTA-ABS and VDRL were developed with sera from the Tuskegee study, profits from which accrued to the US government.
And we are still living with the ramifications. But sadly, this is only one of many in a pattern of experimental abuse.
1966, medical administrator Solomon McBride examines patient. Skin patches contain experimental pharmaceuticals, placed under orders of Albert Klingman, M.D. in Holmsburg Prison Complex.
Experiments on those imprisoned (outlawed by every other developed nation since WW2), with higher rates of incarceration fell disproportionately on Blacks. The man who developed Retin-A (and reaped millions), Albert Klingman M.D. was the 1960's dermatologic equivalent of Marion Sims. He tested numerous drugs and cosmetics for Johnson & Johnson, Merck, Helena Rubenstein and DuPont with skin patches. A prison guard remarked that at the beach, former inmates were readily identified by the patchwork of scars on their backs. Klingman also injected men with syphilis, gonorrhea, malaria. But when he covered inmates with the banned industrial solvent, DSMO, he caught the eye of the FDA, which removed him from their list of approved researchers. Inexplicably, one month later, he was restored, and began experiments with mind control drugs for the CIA, leaving behind a legacy of suffering. Experiments on foster children, on minority communities with biologic weapons and release of disease carrying mosquitoes continued.
Women's health care is particularly fraught. Historically, unwanted and unwarranted surgical interventions abounded, so much so that an unauthorized, unconsented to, undisclosed hysterectomy, was called a "Mississippi appendectomy". (See Fannie Lou Hamer.) Margaret Sanger, hailed as a feminist and birth control pioneer, was the most famous American populizer of eugenics; her first birth control campaigns were directed towards Eastern Europeans before she set her sites on "The Negro Project." Birth control or forced sterilization as a requirement for welfare recipients, or for the "feeble minded" or poor and the use of problematic birth control in free clinics (Dalkon shield, Depo-Provera, Norplant) further undermine trust in the medical profession.
Were you taught Sickle Cell is a disease of Blacks? Well, it isn't. Distribution of sickle cell matches a map of the prevalence of the anopheles mosquito and malaria, as the trait is protective. The trait can be found in people from "Spanish-speaking regions in the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy." (CDC) Yet, it is commonly thought of as a "Black" disease, one more marker of inferiority.
The approach to mental health among Blacks is also fraught. A 1960’s-70’s era University of Mississippi neurosurgeon Orlando Andy, performed bilateral thalamotomies on African American children as young as 6 who were “aggressive” or “hyperactive”, rather than considering counseling or therapy. In the 1960's, urban unrest was considered a symptom of mental illness, as were expressions of anger towards whites. A NIMH (National Institute of Mental Health) 600K grant for brain research on “urban rioters” in 1967 ignored social factors such as poverty, slum housing and poor education. And a 1992 NIMH violence initiative, comparing inner city boys (black) to rhesus monkeys in the jungle, was justified by citing the danger of school shootings (all of which had been by white boys in suburban schools).
Disparities in care continually surface, including the post 9/11 Anthrax scares. When anthrax containing letters were mailed to those in Congress, the building was immediately evacuated, sealed and cleaned. The post offices where the letters were processed? After days of protests, finally inspected. Machines tested positive. Machines cleaned. Workers? Building? The Black stage 4 cancer patient, prescribed pain medications well below the WHO threshold standard of care and the Black mother discharged after her Cesarean section with Ibuprofen while the white one is discharged with opiates are only two victims of the unconscious bias and original systemic racism in medicine. The decreased life expectancy for Blacks, the multiples of maternal and fetal mortality for Blacks as compared with whites, the prevalence of hypertension and diabetes are more manifestations.
I am intentionally not fully addressing more contemporary issues of disparities, such as the AIDS epidemic, the "Crack epidemic", The War on Drugs, Covid-19 because each could fill a book. Nor am I addressing the dearth of Black physicians, their exclusion from hospital privileges and the AMA until relatively recently, absence of essential teaching materials (such as appearance of skin lesions with different skin colors, ) the absence of universal health insurance, underfunding of public options. Rather, I am taking the long view of history not taught to provide context for today. We are deep into a pandemic that has fileted the American psyche. My hope is that understanding why Blacks may have a very different take on much of what is happening today may open the door to understanding, equity, inclusion, empathy and centuries overdue change.
In response to the Civil Rights movement and the end of Jim Crow, after a short interlude of affirmative action to address past injustices, "race blindness" emerged as a conservative policy. It posits that racism is no longer a cause of social inequities, rather health, wealth and status discrepancies are due to own personal failings (back to social Darwinism). In that context, no social policies are needed to account for race. However, that ignores history. Many hoped that when the human genome project failed to identify a "race" gene and demonstrated that 99.9% of all our genetic code is the same, the notion that race is genetic would finally be dispelled. Instead, scientists, still steeped in race theories and myths, began concentrating research on the 0.1% difference, still looking for the elusive marker of race (and inferiority).
It is in that context that I write, in the hopes that learning more about the history none of us were taught will matter, and mobilize some to make a difference.
For further reading (especially recommended for anyone associated with the practice of medicine): Medical Apartheid: The Dark History of Medical Experimentation on Black Americans by Harriet A. Washington (1)
Medical Bondage: Race, Gender and the Origins of American Gynecology by Diedre Cooper Owens