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 Contd

• 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 patients
  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 Contd

• 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 dont trust you doctors. Yall gave it
  to me now you wanna kill me? Ill be fine by
  myself. I dont 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 61
• National blackwhite prevalence ratio was 11.61
• 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 treated for 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

15
(No Transcript)
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

17
(No Transcript)
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 studys 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.

20
(No Transcript)
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 doctors
  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 1940s 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 WHOs declaration of Helsinki
  specified that informed consent was needed for
  any experiment involving human beings
• These men were still never consented

26
(No Transcript)
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 ParkeDavis 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

• Dysaethesia aethiopica 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

45
(No Transcript)
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
• gt 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
51
The History of Black Medical Colleges

• The first black medical college Howard
  University was founded in 1868
• By 1900, there were about 10 black medical
  colleges
• More had opened prior to this, but had quickly
  closed
• Most were funded independently by religious
  groups, and individual donors
• Only Howard university had congressional backing
• By 1923, only 2 black colleges were left in the
  country

52
Earlier on in History

• There was already crisis with funding and quality
  of black medical colleges
• Underserved black patients needed to be cared
  for, but most of the black medical school
  students were from poor backgrounds
• Most of the staff were overworked and underpaid
• They lacked adequate lab and classroom equipments
  and facilities
• Board failure rates exceeded 20 in 1904/5
• They had evening classes for their students that
  worked full time

53
Earlier on in History (contd)

• ? How to solve the problem?
• Increase tuition?
• Engage philanthropists to contribute to black
  medical education?
• Engage to government to ensure better care for
  its black citizens by ensuring better medical
  education for their physicians?

54
The Flexner Report (contd)

• Looked at
• Medical school entrance requirement
• Size and training quality of the faculty
• Size of endowment and tuition
• Quality of laboratories
• Availability of teaching hospitals and their
  clinical teaching staff
• Began in 1908, was completed by 1910
• In the aftermath of the Flexner report, only 2
  black medical schools remained in the nation

55
The Flexner Report (contd)

• Until the Flexner Report, black schools were
  never noticed in medical report, articles or
  commentaries
• The report was published in JAMA in 1910
• Described as harsh, frank, chiding, sarcastic and
  biting

56
Some Flexner Report Statements

• The negro must be educated not only for his
  sake, but for ours. ten million of them live in
  close contact with sixty million whites.
• Of the seven medical schools five are at this
  moment in no position to make any contribution of
  value sending out undisciplined men whose lack
  of training is covered up by the imposing MD
  degree.
• The negro must be educated not only for his
  sake, but for ours to know and to practice
  fundamental hygienic principles. A well-taught
  negro sanitarian will be immensely useful.

57
The Flexner Report (contd)

• The black medical schools had 2 missions
• To offer the more promising of the race a
  substantial education in which hygiene rather
  than surgery is strongly accentuated.
• To imbue these men with missionary spirit so
  that they will look upon the diploma as a
  commission to serve their people humbly and
  devotedly away from large cities in the village
  and on the plantation, upon which light has
  hardly as yet begun to break.

58
History of AA Med Colleges (contd)

• 5 of the 7 medical schools closed after this
  report
• Last of them closed in 1923
• Surviving schools Howard and Meharry college in
  Nashville, TN
• NMA (an AMA sub-committee) remained silent on the
  Flexner report
• It took a bit of cajoling for the Carnegie
  Foundation and the GEB to provide the funds to
  keep the 2 medical colleges functioning
• Flexner was instrumental in the achieving this aim

59
History of AA Med Colleges (contd)

• Between 1932 1942, number of black physicians
  dropped by 5, while the number of white
  physicians rose by 12
• It was not until 1966 that another black college
  was founded Charles Drew medical school in L.A.
• Morehouse medical college in Atlanta, GA was
  subsequently founded in 1975

60

• PAST ACHIEVEMENTS

61
Some AA Contributions to Medicine

• 1721 Onesimus (an African slave) describes the
  African method of innoculation against small pox
  to Cotton Mather
• Technique later perfected by Edward Jenner in the
  1790s by the use of a less virulent org
• Used to protect American revolutionary war
  soldiers

62
Some AA Contributions to Medicine

• Dr. Daniel Hale Williams
• 1891Founded Provident hospital
• 1st inter-racial hospital in the United States
• 1893 Performs the first successful operation (in
  the world) on a human heart
• Performed on a chest stab wound victim

63
Some AA Contributions to Medicine

• 1917 Dr. Louis T. Wright develops the
  intradermal technique for vaccinating soldiers
  against small pox
• 1927 Dr. William Augustus Hinton develops the
  Hinton test for diagnosing Syphilis
• Later develops an improved version the
  Hinton-Davies test

64
Some AA Contributions to Medicine

• 1940 Dr. Charles R. Drew, after 2 yrs of blood
  research, discovers that plasma can replace whole
  blood transfusions
• Developed the concept of BLOOD BANK
• Blood can now be stored for longer periods of
  time as plasma

65
Some AA Contributions to Medicine

• 1944 Vivien Thomas, a technician in the labs of
  Dr. Alfred Blalock at Johns Hopkins Hospital ,
  develops the Blalock-Taussig shunt for treatment
  of Tetralogy of Fallot
• 1976 awarded Doctor of Laws honorary degree by
  Johns Hopkins University
• 1979 post retirement, becomes instructor
  emeritus of surgery

66
Blalock-Taussig Shunt Developed with the help
of Vivien Thomas
67
Some AA Contributions to Medicine

• Dr. Samuel L. Kountz participated in the first
  west coast kidney transplant in 1959
• 1961 Dr. Kountz and Dr. Cohn made medical
  history at Stanford University when they
  developed a method and performed the first
  transplant in which an unidentical (non-twin)
  donor and mother was used
• Later, developed the Kountzs technique for
  detecting and treating acute rejection
• Prior to this, lt 5 2yr survival post kidney
  transplant
• Methylprednisolone
• 1964 American College of Cardiology Outstanding
  Investigator Award

68
Some AA Contributions to Medicine

• 1987 Neurosurgeon Dr. Ben Carson, leads a
  seventy-member surgical team at Johns Hopkins
  Hospital to separate Siamese twins joined at the
  cranium

69
Some AA Contributions to Medicine

• 1991 Dr. Vivian Pinn - the first female (and
  first African-American female) Director of the
  Office of Research on Women's Health, National
  Institutes of Health
• 1997 Dr. Donna Christian-Christensen - the first
  female physician (and first African-American
  female physician) in the U.S. Congress

70
HEALTH DISPARITIESTo Think About
71
Physician Disparities Statistics

• Nationwide in a population of about 28 minority
  population, only 5 make up the physician
  population and 3, the medical school faculty
• Minorities spend more time with students and
  patients, and less time on research yet, much
  less likely to achieve faculty promotion
• 98 of senior leaders in health care management
  are white
• - (ACP Position Paper, 2004)

72
Physician Disparities Statistics

• Black patients saw white physicians 22 of the
  time VS white patients who saw black physicians
  1 of the time
• 77 of white physicians believed that disparities
  in healthcare related to race, ethnicity or
  educational status, rarely or never happened
• 80 of black physicians reported the opposite
  there were differences
• (Kaiser Family Foundation, 2001)

73
Physician Disparities Statistics

• Physicians who treat African Americans are less
  likely to be board-certified, and less able to
  refer patients to specialists than physicians who
  treat white patients
• 77 of physicians practicing in black
  neighborhoods are board certified in their
  primary care specialty VS 88 of physicians
  practicing in white neighborhoods
• 28 of physicians treating blacks said they could
  not provide high quality healthcare to their
  patients VS 17 of physicians treating whites
• (NEJM, 2004)

74
Whites live significantly longer than blacks
Age In Years
- DHHS Fact Sheet, 2004
75
(No Transcript)
76
(No Transcript)
77
(No Transcript)
78
(No Transcript)
79
Death Rates for Diseasesof the Heart, by
Race/Ethnicity, 2001
80
Higher Prevalence of Diseases in African Americans

• Heart Disease (Andrews et al, 2001)
• Prostate Cancer (Reddy et al, 2003)
• Lung Cancer (Stellman et al, 2003)
• HIV (Torian et al, 2002)
• Stroke (Ruland and Gorelick, 2005)
• Renal Cancer (Vaishampayan et al, 2003)
• Breast Cancer (Ghafoor et al, 2003)
• Cervical Cancer (Jemal et al, 2004)
• Oral Cancer (Shavers et al, 2003)
• Tooth loss (Gilbert et al, 2003)

• Obesity and Diabetes (Cossrow and Faulkner, 2004)
• Chronic Asthma (Boudreaux et al, 2003)
• CRC (Baquet and Commiskey, 1999)
• Pancreatic Cancer (Silverman et al, 2003)
• Lymphomas (Briggs et al, 2003)
• Endometrial Cancer (Randall and Armstrong, 2003)
• Lupus nephritis (Lea, 2003)
• Hepatitis B and Syphilis (Schrag et al, 2003)
• Arthritis (Dunlop et al, 2001)

to name a few
81
General Disparities in Health Care

• African Americans are less likely to
• Report health insurance
• Receive recommended immunizations
• Receive screening and treatment for cardiac risk
  factors and cancer
• 91,000 African Americans die each year because
  of health disparities
• Dr. Rodney Hood, National Medical Association

82
National Initiatives

• Healthy People (REACH) 2010 initiative
• Launched by the DHHS in 2000
• Being executed by the CDC
• Agency for Healthcare Research and Quality (AHRQ)
• National Institutes of Health (NIH)
• CDC National Immunization Program
• CMS Initiatives
• ESRD Clinical Performance Measures Project
• Quality Improvement Organizations
• Kaiser and RWJ Foundation
• Centers for Healthy Hearts Souls
• Doctors back to school Program (AMA Minority
  Affairs Consortium)

83
In Conclusion

• African American patients are wary of physicians
• Most of the distrust stem from past exploitations
  of the African American community as well as
  current disparities that exist within our
  healthcare system
• The past cannot be altered, but the bad outcomes
  of the seeds planted in the past can be remedied

84
In Conclusion

• Steps must therefore be taken to recognize the
  mistakes of the past and make necessary efforts
  to eliminate continued gaps and mishaps within
  our healthcare system
• We therefore hope that we can create a more
  unified healthcare system within which our
  citizens are well cared for, irrespective of race
  and ethnicity

85
(No Transcript)