Ghosts from the Past

1. Ghosts from the Past An African American Perspective on the History of Medicine Dr. Tochi M. Okwuosa

2. Case 1 • A 45 yo AA female without any significant past medical history presented to the Emergency department with complaints of generalized fatigue and immense shortness of breath – worsening in the past 1 month. She denied having similar symptoms in the past. • Labs revealed leukopenia, anemia and thrombocytopenia (pancytopenia) • Chest X-Ray revealed axillary and mediastinal lymphadenopathy

3. Case 1 Cont’d • Chest CT confirmed the axillary LAD was accessible by fine needle aspiration • Patient was also found to be B12 deficient and was started on B12 replacement Tx • B12 deficiency could have been the etiology of her anemia and thrombocytopenia, however… • In order to further workup the patient’s lymphadenopathy and leukopenia, she was approached for a consent on a fine needle aspiration with possible subsequent bone marrow biopsy, BUT • Patient refused saying she “does not want to be used for an experiment”

4. Case 2 • A 39 yo AA male with history of HIV – known to have refused treatment in the past - presented to the emergency department with complaints of cough, shortness of breath, pleuritic chest pain, fever/chills and generalized fatigue. • Oxygen saturation of 85% on RA in the ED improved with 4LNC oxygen • Chest X-Ray revealed a diffuse interstitial pulmonary process • Recent labs revealed a CD4 count of 154, now giving the patient a diagnosis of AIDS • His LDH was also elevated

5. Case 2 Cont’d • Admitted to general medicine on bactrim, avelox and airborne precautions for his pneumonia – most likely Pneumocystis carinii (PCP) vs community acquired vs Tuberculosis • Sputum cultures later confirmed PCP, no TB • Treated with bactrim and much improved by time of discharge 3 days later • Pt later approached about considering treatment for his HIV/AIDS, BUT STATES • “Never. I don’t trust you doctors. Y’all gave it to me… now you wanna kill me? I’ll be fine by myself. I don’t need your treatment”.

6. Sources of HealthCare Differences And Disparities: Populations with Equal Access to Healthcare Gomes and McGuire, 2001

7. SERIES OF BAD BLOOD

8. THE TUSKEGEE SYPHILIS EXPERIMENT • Called the “The Tuskegee Study of Untreated Syphilis in the Negro Male” • Also known as the ‘longest non-therapeutic experiment in human history’ • Conducted by the US Public Health Service (PHS)

9. In The Days of Tuskegee... • Syphilis was more prevalent in urban than rural communities • Blacks more prevalent in rural communities, however… • In rural communities, incidence of syphilis in blacks greater than whites by a ratio of 6:1 • National black:white prevalence ratio was 11.6:1 • Mostly an issue of financial and social class

10. In The Days of Tuskegee... • In those days, syphilitic treatment was a chaos of different regimens • Many piecemeal case studies • In 1929, PHS sponsored the creation of the Cooperative Clinics Group (CCG) • Five leading research-oriented venereal disease clinics: Western Reserve, Johns Hopkins, U Michigan, U Penn and Mayo • Need for a multicenter trial

11. In The Days of Tuskegee... • Retrospective Scandinavian study by Bruusgard et al of 309 pts found spontaneous remission in 43% of syphilis patients • Between 1932 and 1946, other studies concluded that treatment improves eventual course in syphilis in a minority of patients • The treatment of the day also were reportedly harmful to some patients

12. Aim of Study • To prove that spontaneous regression in syphilitic manifestations and the disease in general, occurred with minimal or no treatment • Study was meant to record the natural evolution of untreated syphilis, in the hopes of justifying (or not justifying) treatment programs in blacks • Initially projected to last 6 months

13. Study Design • 600 black sharecroppers from Macon county, Alabama (highest concentration of positive serologic test for syphilis at the time) • 399 patients had syphilis and 201 who did not have the disease • Grossly disadvantaged men, making it easier to enroll them in the study • Told they were being treatedfor “bad blood” – a local term used to describe several illnesses, including anemia, fatigue and syphilis • Received free medical exam, free meals and burial insurance in exchange

14. Study Design • Study was meant to record the natural history of syphilis, in the hopes of justifying treatment programs in blacks • Initially projected to last 6 months

16. The Truth • Study lasted from 1932 to 1972 • These men were not informed of the full nature of the experiment • Underwent painful and potentially dangerous spinal tap procedures - lumbar punctures • Promotional hype to cover up the lumbar punctures: “LAST CHANCE FOR SPECIAL FREE TREATMENT”

18. The Truth • The men received suboptimal treatment for their syphilis • Syphilis treatment of the day – bismuth, neoarsphenamine and mercury – given in such tiny amounts that only 3% of the men showed any improvement • Treatment eventually replaced by “pink medicine” – aspirin • Token medications given as good public relations to ensure nothing interfered with the study’s aim

19. The Truth • Autopsies would eventually be required as part of the study – a fact that was concealed from the men • One of the doctors involved in the experiment was quoted to have said “As I see it, we have no further interest in these patients until they die”.

21. Participants - I • US Public Health Services (PHS) • The Tuskegee Institute affiliated hospital • Study took place in the medical facility of this black University founded by Booker T. Washington • Other predominantly black institutions and local black doctors were involved as well • Surgeon General of the US • Sent the men certificates of appreciation after 25years of the study

22. Participants - II • Nurse Eunice Rivers • A black nurse who was a central figure in the study for most of its 40-yr duration • Trusted by the men, and she seemed to have sincerely cared about their well-being • Unquestioning submission to authority obscured her moral judgment • “we were taught that we never diagnosed, we never prescribed, we followed the doctor’s instructions”. • Still felt nothing ethical was amiss even after exposure of the experiment to the public

23. The Tuskegee Institute Motto: Lifting the Veil

24. Several Treatment Efforts Denied • Study men prevented from participating in several nationwide campaign efforts to eradicate venereal disease • Penicillin discovered in the 1940’s was the first real cure for syphilis • These men were deliberately denied the medication by PHS • During WWII, 250 of the men registered for the draft and were therefore required to get syphilis treatment • All men exempted from treatment by the PHS

25. Treatment Denial Continues…. • In 1943, the Henderson Act (a public health law) required testing and treatment for venereal diseases • Never happened for these men • In 1964, the WHO’s declaration of Helsinki specified that “informed consent” was needed for any experiment involving human beings • These men were still never consented

27. It all comes out in the open • July 25, 1972 – an article in Washington Star by Jean Heller of the Associated Press • Source: Peter Buxtun – a former PHS venereal disease interviewer • Carried by the New York Times as well • Ad Hoc advisory panel of 9 professional members appointed to review the study by the Assistant Secretary for Health and Scientific Affairs

28. Findings of the Panel • The men freely agreed to be studied • Had been misled and had not been informed of the real purpose of the study • Had not been given all the facts required to provide informed consent • Had not been given adequate treatment for their disease • Had not been given the option of quitting the study • Study was ethically unjustified

29. Study Ends…. • October 1972, panel advises stopping the study at once • One month later, US Assistant Secretary for Health and Scientific Affairs announced the end of the study • Later statement by one of the study participants “…nothing learned will prevent, find, or cure a single case of infectious syphilis or bring us closer to our basic mission of controlling venereal disease in the United States”

30. Repercussions…. • By the end of the experiment, • 28 of the men had died directly of syphilis • 100 were dead of related complications • 40 wives were infected • 19 of their babies were born with congenital syphilis

31. Reparations…. • Summer 1973, NAACP files a class action law-suit that resulted in an out of court settlement of approx. $10 million total ($37,500 each) for the Tuskegee study men • In addition, Tuskegee Health Benefit Program established by US government to provide free medical and burial services for all living participants • Health benefits to infected wives, widows and children • The CDC was responsible for this program which remains today at the National Center for HIV, STD and TB prevention

32. Clinton Apologizes • “It is not only in remembering that shameful past that we can make amends and repair our nation, but it is in remembering that past that we can build a better present and a better future”. • Former President Clinton (May 16, 1997) • 8 survivors of the Tuskegee study; five were in attendance, the others had 3 family representatives.

33. Later Repercussions…. • AAs are wary of physicians (especially of the Caucasian race) • sub-optimal medical treatment • Lack of participation of AAs in research • Difficulty in addressing diseases most prevalent among blacks e.g. HIV/AIDS • AAs receive drugs proven by research to be beneficial in the Caucasian population • May no necessarily be optimal for AAs (A-heft & V-heft)

34. Criticisms of the Study • Men did not receive PCN when it became available as a definitive CURE for the disease • Men did not receive informed consent even when this became a law • Men were not given the option of quitting the study • Of note, all the manifestations of the disease (both primary, secondary and tertiary) were well known at the time • For full comparison, whites should have been included in the study as controls • Venereal disease laws were broken in not treating these men (or the men were exempted from being bound by them)

35. Critics of the Criticisms • No one was sure about treatment with PCN, best route of administration or duration of treatment • Administration of PCN would have defeated the aim of the study • By the time PCN was discovered, most of the men were in the tertiary stage and could not have been cured • The researchers were projected as being “truly interested” in the effects of syphilis in black people • Inclusion of patients who had exceeded their mean life expectancy shows the study was not expected to last so long • How could informed consent be obtained from illiterate men?

36. A Legacy of Distrust

37. ?Father of Gynecology? • Dr. J. Marion Sims (1813-1884) • 1845 – 1849: He initiated and perfected the surgical treatment of vesico-vaginal fistula by experimenting on black slave women • All surgeries on black women done without anesthesia • He finally perfected the procedure after he had carried out surgery on his first experimental slave patient - Anarcha - for the 30th time!!!

38. An original painting by Robert Thom depicting the event with some artistic license 100 years later (commissioned by the Parke–Davis Co., from A history of medicine in pictures, edited by Bender GA, 1961).

39. ?Father of Gynecology? • Later (after perfecting the procedure), he performed surgery on the white female counterparts with anesthesia • Regardless of his exploits, he went on to become president of the AMA in 1875 and got the title of Father of Gynecology. • His statue stands in central park, New York

40. Sims Speculum Sims Position From Sims' original text, Silver sutures in surgery, 1858

41. Medicine and Slavery in the 19th Century • Due to high mortality rates for minor surgeries in Louisiana, physicians perfected their C-section techniques on black women first before applying it to white women • Despite state laws banning the dissection of human bodies after death, white medical students stole black bodies from graves to learn surgery since black bodies were not ‘protected by law’

42. The Psychiatry of Slavery • Drapetomania: a mental illness (credited to Dr. Sam Cartwright in the 19th century) that caused black slaves to run away from plantations • “Cured” by repeated whippings

43. The Psychiatry of Slavery • Dysaethesiaaethiopica: caused blacks to suffer from sleepiness, dry skin, lesions, insensitivity to pain, mischievous behavior

44. The Physiology/Anatomy of Slavery • During the chattel slavery era, physicians claimed that blacks had some physiologic and anatomical features that made them better suited to be both slaves and medical research subjects • Small brains, thick lips and thick skin giving them high tolerance for heat, sun and pain

46. World War II • Blood of black soldiers were segregated from that of white soldiers in order to maintain racial separation • Jeopardized lives of black soldiers (drafted to go to war) who were in need of transfusion

47. HeLa Cells • Henrietta Lacks: AA female from Baltimore whose cancer cells were harvested in 1951 (without her knowledge or the knowledge of her family members) for the study of cancer • Financial gain for some researchers distributing her cells while her family was kept in the dark

48. Eugenics Movement • A movement introduced by American Scientists in the late 19th century that initially involved people who had developmental disabilities, mental illness or were criminals • Carried out in about 30 states within the US from 1929; and lasted 45 years • An extension of this program in N. Carolina (after 1945) mandatory sterilization procedures in black women (sometimes unbeknownst to the black women), to avoid passing on their progeny • Program finally ended with anti-eugenics movements in the late 1970s

49. Gains from the Ruins • Very tight government regulations on studies involving human beings. • Informed consent from patients undergoing research or surgical procedures • Sims speculum and sims position for gynecologic exam and surgery • HeLa cells pivotal in the study of Polio and its vaccination • HeLa cells also fundamental in the study of cancer • > 50 years after her death, HeLa cells are still used all over the world in cancer research • Awareness of potential fallacies in medicine

50. What about Black Physicians? AAMC, Minorities in Medical Education, Facts & Figures, 2005