Austin Nation, RN, MSN, PhD(c)
University of California, San Francisco
AAHU Science and Treatment Fellow
What things have you heard?
Where do you think this thinking came from?
How did it make you feel?
How did you respond?
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Curse by God to eliminate gay people
Caused by mosquitoes and/or monkeys
“AIDS was created in a lab by the government to
kill Black and gay people” (genocide)
“The government and pharmaceutical companies
have a cure for AIDS but are making too much
money to release it”
Rich people get different drugs
“A lot of information about AIDS is being held
back from the public”
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HIV/AIDS myths in Black communities often
stem from the historical injustices and
current experiences of Black people
African American fear of medical
mistreatment dates back to the 1700s
History indicates that Black Americans have
experienced numerous medical abuses
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Tuskegee may be the most well known example but it’s not the
only one
Washington, 2007
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Disparities in the health care sector continue to hit
the African American community the hardest.
Slavery, Segregation, Racism, Poverty
Many issues contribute to the disproportionate rates
of morbidity (disease) and mortality (death) among
Black people
◦ Generations of racism & poverty
◦ More likely to lack access to surgical & emergency medical
care
◦ More likely to use hospitals that employ less-experienced
staff & less likely to receive high-quality primary care
Culp-Ressler, T. (2014)
Centers for Disease Control & Prevention (2015)
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From 1932 to 1972 the United States Public
Health Service withheld adequate treatment
from a rural poor Black men in Alabama who
had syphilis.
1940s validation of penicillin as an
effective cure for the disease
Tuskegee Syphilis Study has emerged as one
of the most prominent examples of medical
mistreatment because it reinforced deeply
entrenched beliefs within the Black
community.
Many African Americans agreed that the study
represented “nothing less than an official,
premeditated policy of genocide”
Washington, 2007
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J. Marion Sims is honored as
the “father of gynecology”
(1813-1883)
Sims used enslaved African
women for his experiments.
They did not give consent to
his surgeries, and were
operated on without anesthesia
◦ Anarcha had >30 operations
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He also drilled holes into the
skulls of Black infants to
research trismus (jaw spasm)
Washington, 2007
Wall, 2006
Perper & Cina, 2010
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1930, 1960, 1970, 1980 (and even today) – Family Planning and
Involuntary Sterilization (Negro Project) to lower Black birth rate,
reduce welfare burden
1950 – Henrietta Lacks at Johns Hopkins-immortal cells
1960 – Prison and Military abuses (injected with cancer cells to
watch disease progression, paralyzed with neuromuscular
compound, experimental vaccines)
1970 – Sickle Cell Screening (confusion regarding carriers versus
disease) - military considered banning Blacks, Black airline
stewardesses fired
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Some believe that the collective experiences of Black people in
the United States have led to a high prevalence of medical
mistrust among Black communities.
Blacks are 2 -3 times as likely to delay routine check-up as a
demonstration of masculinity and caused us to develop different
behavior patterns, values, and beliefs
Medical mistrust may:
◦ Lead to lower feelings of health care satisfaction
◦ Contribute to skepticism about the efficacy of medications
◦ Lead to critically low participation of Black Americans in
clinical trials
Washington, 2007
◦ Inhibit successful and effective and patient-provider
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Acknowledging & Addressing Mistrust While
Engaging Black Communities
Trust in health care providers leads to better
health outcomes and is associated with:
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Increase HIV-related outpatient clinic visits
Fewer emergency room visits
Increased use of HIV therapy
Improved physical and mental health
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Acknowledge it… they should not be treated
as “crazy” or “absurd”
Beliefs, misconceptions, and fears of
genocide should not be dismissed since they
are held by many Black Americans
It is understandable, and even expected
(especially with older clients), that Black
people may be suspicious of official
institutions based on their historical
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Community Empowerment
◦ Recruit and educate Black leaders to acts as
community peer educators on suspicion and
skepticism
◦ Increase the number of HIV science literate Black
community members to serve as popular opinion
leaders, health educators, and health professionals
◦ Empower and equip communities to transform their
realities, decreasing the perception that other
individuals and entities have control over the health
and the well-being of Black Americans
Acknowledge
Doubt/Distrust Without
Being Dismissive
Acknowledge Origins of
Medical Mistrust in
Historical Context
Talk About Ethical Procedures
& Systems of Accountability
(informed consent, Data &
Safety Monitoring Board)
Use Resources to Train &
Employ Community Leaders
to Teach About Biomedical
Research & Interventions
Build Trust With Providers
& Black Patients (inside &
outside of clinical settings)
Ask People Why They Feel the
Way they do & Ask What Need
to Hear/See to Increase Trust
in Research & Medical
Establishments
Meet People Where They
Are & Respond With
Cultural Competence
THANK YOU!
Bogart, L. & Thorburn, S. (2005). Are HIV/AIDS conspiracy beliefs a barrier to HIV prevention
among African Americans? JAIDS Journal of Acquired Immune Deficiency Syndromes 38.2: Pages
213-218.
Centers for Disease Control & Prevention (2015). Black or African American Populations. Retrieved
from http://www.cdc.gov/minorityhealth/populations/REMP/black.html
Culp-Ressler, T. (2014). Why Racism is a Public Health Issue. Think Progress. Retrieved from
http://thinkprogress.org/health/2014/02/03/3239101/racism-public-health-issue/
Gebeloff, Park, Bloch, & Ericson, (2013). Where Poor and Uninsured Americans Live. Retrieved from
http://www.nytimes.com/interactive/2013/10/02/us/uninsured-americans-map.html?_r=0
Hoberman, J. (2012). Black and Blue: The Origins & Consequences of Medical Racism. University of
California Press
Klonoff, E. & Landrine, H. (1999). Do Blacks Believe that HIV/AIDS is a Government Conspiracy
Against Them? Preventive Medicine 28.5 (1999): Pages 451-457.
Perper, J. & Cina, S. (2010). When Doctors Kill: Who, Why, and How. Page 88.