Medical Apartheid: The Dark History of Medical Experimentation on Black Americans

Book Preface

On a sylvan stretch of New York’s patrician upper Fifth Avenue, just across from the New York Academy of Medicine, a colossus in marble, august inscriptions, and a bas-relief caduceus grace a memorial bordering Central Park. These laurels venerate the surgeon James Marion Sims, M.D., as a selfless benefactor of women. Nor is this the only statuary erected in honor of Dr. Sims. Marble monuments to his skill, benevolence, and humanity guard his native South Carolina’s statehouse, its medical school, the Alabama capitol grounds, and a French hospital. In the mid-nineteenth century, Dr. Sims dedicated his career to the care and cure of women’s disorders and opened the nation’s first hospital for women in New York City. He attended French royalty, his Grecian visage inspired oil portraits, and in 1875, he was elected president of the American Medical Association. Hospitals still bear his name, including a West African hospital that utilizes the eponymous gynecological instruments that he first invented for surgeries upon black female slaves in the 1840s.

But this benevolent image vies with the detached Marion Sims portrayed in Robert Thom’s J. Marion Sims: Gynecologic Surgeon, an oil representation of an experimental surgery upon his powerless slave Betsey. Sims stands aloof, arms folded, one hand holding a metroscope (the forerunner of the speculum) as he regards the kneeling woman in a coolly evaluative medical gaze. His tie and morning coat contrast with her simple servants’ dress, head rag, and bare feet.

The painting, commissioned and distributed by the Parke-Davis pharmaceutical house more than a century after the surgeries as one of its A History of Medicine in Pictures series, takes telling liberties with the historical facts. Thom portrays Betsey as a fully clothed, calm slave woman who kneels complacently on a small table, hand modestly raised to her breast, before a trio of white male physicians. Two other slave women peer around a sheet, apparently hung for modesty’s sake, in a childlike display of curiosity. This innocuous tableau could hardly differ more from the gruesome reality in which each surgical scene was a violent struggle between the slaves and physicians and each woman’s body was a bloodied battleground. Each naked, unanesthetized slave woman had to be forcibly restrained by the other physicians through her shrieks of agony as Sims determinedly sliced, then sutured her genitalia. The other doctors, who could, fled when they could bear the horrific scenes no longer. It then fell to the women to restrain one another.

I wanted to reproduce Thom’s painting on the cover of this book, or at least in the text, but when I asked permission of its copyright holder, Pfizer Inc., the company insisted on reviewing the entire manuscript of this book before making a decision. As an independent scholar I could not acquiesce to this, and I used another cover image. When I renewed my request to use the image within the text, Pfizer agreed to base its decision upon reading this chapter and an outline of the book.

The Pfizer executives apparently were uncomfortable with what they read, because they refused to grant permission to reproduce this telling image or even respond to my query after I supplied the requested chapter and outline. This act of censorship exemplifies the barriers some choose to erect in order to veil the history of unconscionable medical research with blacks.

Betsey’s voice has been silenced by history, but as one reads Sims’s biographers and his own memoirs, a haughty, self-absorbed researcher emerges, a man who bought black women slaves and addicted them to morphine in order to perform dozens of exquisitely painful, distressingly intimate vaginal surgeries. Not until he had experimented with his surgeries on Betsey and her fellow slaves for years did Sims essay to cure white women.

Was Sims a savior or a sadist? It depends, I suppose, on the color of the women you ask. Marion Sims epitomizes the two faces—one benign, one malevolent—of American medical research.

“Of all the forms of inequality, injustice in health is the most shocking and the most inhumane.” In 1965, Martin Luther King, Jr., spoke these words in Montgomery, Alabama, at the end of the Selma to Montgomery march that had been attended by the black and white physicians of the Medical Committee for Human Rights. King had invited the doctors not only to give medical succor to injured marchers but also to witness the abuse suffered at the hands of segregationists. With these almost unnoticed words, King ushered in a new era in civil rights, because as Delegate to Congress Donna Christian-Christensen, M.D., chair of the Congressional Black Caucus Health Braintrust, has declared, “Health disparities are the civil rights issue of the 21st century.” Thus Dr. King’s alarm over racial health injustice was prescient, and were he alive today, his concern would be redoubled. Mounting evidence of the racial health divide confronts us everywhere we look, from doubled black infant death rates to African American life expectancies that fall years behind whites’. Infant mortality of African Americans is twice that of whites, and black babies born in more racially segregated cities have higher rates of mortality. The life expectancy of African Americans is as much as six years less than that of whites.

Old measures of health not only have failed to improve significantly but have stayed the same: some have even worsened. Mainstream newspapers and magazines often report disease in an ethnocentric manner that shrouds its true cost among African Americans. For example, despite the heavy emphasis on genetic ailments among blacks, fewer than 0.5 percent of black deaths—that’s less than one death in two hundred—can be attributed to hereditary disorders such as sickle-cell anemia. A closer look at the troubling numbers reveals that blacks are dying not of exotic, incurable, poorly understood illnesses nor of genetic diseases that target only them, but rather from common ailments that are more often prevented and treated among whites than among blacks.

Three times as many African Americans were diagnosed with diabetes in 1993 as in 1963. This rate is nearly twice that of white Americans and is sorely underestimated: The real black diabetes rate is probably double that of whites. As with most chronic diseases, African Americans suffer more complications, including limb loss, blindness, kidney disease, and terminal heart disease. Cancer, the nation’s second greatest killer, is diagnosed later in blacks and carries off proportionately more African Americans than whites. African Americans suffer the nation’s highest rate of cancer and cancer deaths.

The distortion of African American death rates is illustrated by the common dismissal of black women’s breast-cancer risks as “lower than white women’s.” This characterization implies that black women are at low risk from breast cancer, but their risk is only slightly lower, because the estimated lifetime risk of developing breast cancer is ten per one hundred for white women born in 1980, and seven per one hundred for black women born that year. Moreover, this lower risk of developing breast cancer is overshadowed by blacks’ much higher risk of dying from it: Eighty-six percent of white women with breast cancer are alive five years later; only 71 percent of black women survive that long. A black woman is 2.2 times as likely as a white woman to die of breast cancer. Black women have been undergoing mammograms at the same rate as white women but are more likely to receive poorer-quality screening, which may not detect a cancer in time for a cure. A black woman is also more likely to develop her cancer before age forty, too early for recommended mammograms to catch it, and black women are diagnosed at a more advanced stage than either Hispanic or white breast-cancer patients. Black breast-cancer patients have a worse overall prognosis, and a worse prognosis at each stage. Black men have the nation’s highest rates of developing and of dying from prostate and lung cancers.

Despite its image as a disease that affects middle-aged white men, heart disease claims 50 percent more African Americans than whites and African Americans die from heart attacks at a higher rate than whites. African Americans are more likely to develop serious liver ailments such as hepatitis C, the chief cause of liver transplants. They are also more likely to die from liver disease, not because of any inherent racial susceptibility, but because blacks are less likely to receive aggressive treatment with drugs such as interferon or lifesaving liver transplants.

Even the legion of newest illnesses—emerging disease such as HIV/AIDS and hepatitis C—kills blacks at much higher rates than whites. AIDS, the scourge of our time, has become a disease of people of color here and abroad: Forty-nine percent of HIV-infected Americans are African Americans and 86 percent of children with AIDS are African American or Hispanic. Blacks are ten times as likely to develop AIDS as whites.

Mental ailments are destroying blacks, as well: Black women suffer the highest rates of stress and major depression in the nation and suicide rates soared 200 percent among young black men within just twenty years.

These are dire statistics, born of complex interactions among unhealthy environments, social pressures and limitations, lifestyle factors, and limited access to health care, including very limited access to cutting-edge therapeutic medical research that is meant to help treat or cure a patient with a disorder. But this dearth of therapeutic research is accompanied by a plethora of nontherapeutic research with African Americans, which is meant to investigate medical issues for the benefit of future patients or of medical knowledge.

And this brings us to the subject of this book, which documents a peculiar type of injustice in health: the troubled history of medical experimentation with African Americans—and the resulting behavioral fallout that causes researchers and African Americans to view each other through jaundiced eyes. In his 1909 preface to The Doctor’s Dilemma, George Bernard Shaw scathingly observed, “The tragedy of illness at present is that it delivers you helplessly into the hands of a profession which you deeply mistrust.” He could have been speaking for contemporary African Americans, because studies and surveys repeatedly confirm that no other group as deeply mistrusts the American medical system, especially medical research.