“If Jehvan were white, his odds of finding a donor match would be 77%. Because he is Black, those odds drop to 23%.”
This piece tells the story of a young Black male fighting cancer, and his desperate attempts to find a bone marrow donor. The mere fact that he is Black drops his chances of finding a positive match from 77% to 23%. The article goes on to discuss the reason for this is there are not enough Black donors, calls for more people to donate, and ends.
But what this doesn’t discuss is a much bigger, far deeper issue: racism and lost trust in medicine.
We cannot look at the dead leaf and not inspect the root.
BIPOC Americans have experienced centuries of abuse, malpractice, and mistreatment at the hand of medical professionals.
1840’s: The “father of modern gynecology”, James Marion Sims, a man who enslaved other human beings, performed procedures and experiments on enslaved Black women with no anesthesia or consent. Even after anesthesia was introduced to the medical community, Sims refused to use it as he believed Black people did not experience pain (a belief still held today–see the PNAS article below).
1900’s: Compulsory (required by law) sterilization targeted at Native, Black, and Puerto Rican women, with the first law being passed in 1907. In 1924, the US Supreme Court confirmed these laws in Buck v. Bell. This case was brought to the courts by Carrie Bell, a young white woman who had been institutionalized and sterilized following a r*pe resulting in pregnancy. The Supreme Court ruled against her, providing the legal backing needed to spread these laws across the US. This led to the sterilization of approximately 60,000 people. CA had the most robust program, sterilizing 15,000 people by 1942. Their law was used as the framework for other laws across the country, as well as in Nazi Germany’s sterilization law. VA and NC sterilized nearly 8,000 people each. And all of these compulsory sterilization laws disproportionately targeted poor, disabled, institutionalized, and BIPOC people. Of the 8,000 people sterilized in NC, nearly 5,000 were Black.
1930’s: In the “Tuskegee Study of Untreated Syphilis in the Negro Male,” 399 Black men with syphilis were recruited under the lie that they would receive “special free treatment’ and were enrolled to the study without their consent. Why? The present treatments cured cases less than 30% of the time and the government & medical field wanted to understand the long-term health effects if the disease went untreated. Researchers went so far as to give the list of names of all men in the study to local doctors and instruct them not to treat the men if they came in seeking help for syphilis. Nearly a decade later, penicillin was found to be an effective treatment for the disease but none of the men in the study were treated. In fact, research continued to follow them through their death. Reparations and settlements were not made until the 1970’s.
1951: 31 year old Henrietta Lacks (born in Roanoke, VA like me!), was admitted to Johns Hopkins with terminal cervical cancer. Her biopsy cells made it to Dr. Gey’s lab, who had been trying for years to keep cells alive for studies and had been unsuccessful to this point. But Henrietta’s cells were different–they not only stayed alive, but they doubled every 20 hours or so. He renamed them HeLa cells, and her cells went on to develop the first polio vaccine, research cancer and AIDS, create vaccines for dogs/cats/other animals, have made advances for the study of infectious disease and microbiology, test the effect of radiation and poison, study the human genome, and were even sent to space! All of this with no credit to her or her family. It wasn’t until 2013 that Henrietta’s family discovered what had been taking place, with no credit to them, and a non-financial settlement was reached with the NIH.
1970/1980: Black and Indigenous women were continually sterilized without knowledge or consent, despite repeals of sterilization laws in the ‘60s.
2006-2010: 144 incarcerated women in CA were illegally sterilized
2017: TN judge ruled incarcerated people could have their sentences lowered by 30 days if they were sterilized. This has now been reversed.
2019/2020: Black, Native, and Alaska Native mothers are 2-3x more likely to die from pregnancy-related problems than white women. Most of these are preventable. And why is this happening? Racial disparities and societal factors in and out of the doctor’s office. This is the result of decades of malpractice, mistreatment, and racism in medicine as outlined above. Please read the articles below for more information.
2020: Allegations of involuntary hysterectomies at ICE facilities. This is being investigated.
J. Marion Sims
Racism & Pregnancy
General Resources on Racism in Medicine