Josephine Ayankoya, MPH

Black AIDS Institute

JosephineA@BlackAIDS.org
 Black Health Disparities
 Myths About HIV/AIDS
 Mistreatment & the Medical System
 What Can We Do? Addressing PrEP Myths
 Pseudoscience - a collection
of beliefs or practices
mistakenly regarded as
being based on scientific
method.
 Medical Racism – when racial
prejudices from the larger
society impact the
diagnosis, treatment, &
overall health practices;
racial discrimination that
influences the diversity of
clinicians & healthcare staff

Hoberman, 2012
 Throughout this presentation, the following
terms will be used interchangeably
◦ African American
◦ Black
◦ African Heritage

 Referring to all people of African Descent,

particularly, in the context of the United
States of America
 Disparities in the health care sector continue
to hit the African American community the
hardest.
 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)
Common HIV/AIDS-related myths prevalent in
Black communities include:
 “AIDS was created in a lab by the government
to kill Black and gay people”
 “The government and pharmaceutical
companies have a cure for AIDS but are
making too much money to release it”
 “A lot of information about AIDS is being held
back from the public”
Klonoff & Landrine H, 1999
Bogart & Thorburn, 2004
Black AIDS Institute, 2014
Have any of you heard things like this
before?

How did it make you feel?

How did you respond?

 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
 Tuskegee may be the most well known example but it’s not the
only one

Washington, 2007
• Several social and historical factors have
influenced African American attitudes and beliefs
towards the medical community
◦ For example, ongoing disparities in access to health
care services and technologies have influenced
medical distrust in black communities.

Washington, 2007
 During the Antebllum period
◦ Black Americans’ fears about mistreatment by the
medical profession date back to the period, when
medical abuses experienced by enslaved Africans
were widespread and common
 After the Civil War
◦ The extent to which African Americans were used
as unwilling subjects after the years of
emancipation is unclear, though reports of medical
abuses persisted even after the abolition of slavery

Washington, 2007
 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
 He also drilled holes into the
skulls of Black infants to Washington, 2007
research trismus Wall, 2006
Perper & Cina, 2010
 From 1932 to 1972 the United States
Public Health Service withheld
adequate treatment from a poor Black
men who had syphilis.
 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
 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.
 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
◦ Inhibit successful and effective and patient-
provider relationships and overall medical care

Washington, 2007
Acknowledging & Addressing Mistrust While
Engaging Black Communities
 Trust in health care providers leads to better
health outcomes and is associated with:
◦ Increase HIV-related outpatient clinic visits
◦ Fewer emergency room visits
◦ Increased use of HIV therapy
◦ Improved physical and mental health
 Beliefs, misconceptions, and fears of
genocide should not be dismissed since they
are held by many Black Americans
 It is understandable, and even expected, that
African Heritage people may be suspicious of
official institutions based on their historical
relationships and experiences
 Address the current discrimination that Blacks
experience
 Acknowledge of the origin of conspiracy beliefs
in the context of the historical discrimination
 Acknowledge that being suspicious of the
government or corporation is understandable
given the histories of African Americans
 Ask clients and community members what they
think about where AIDS comes from and why
people become HIV positive
 Conspiracy theories and moral rationalizations of
AIDS are common grounded in the Black
community’s experience, so they should not be
treated as “crazy” or “absurd”
 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
 Social Action/Community Mobilization
◦ 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
 Cultural Sensitivity
◦ Providers can play a fundamental role in dispelling
conspiracies, especially when discussing treatment
options.
◦ A patient’s trust in their providers and their health
satisfaction are related to HIV treatment adherence
◦ Provider cultural sensitivity training for health care
providers, educators, and community leaders to
help mitigate skepticism.
◦ Ensure that programming for Black Americans
addresses conspiracy theories and relates them to
the current AIDS epidemic in the Black
communities.
 Acknowledge Use Resources to Train &
Employ Community Leaders
Doubt/Distrust Without to Teach About Biomedical
Being Dismissive Research & Interventions

Acknowledge Origins of Build Trust With Providers

Medical Mistrust in & Black Patients (inside &
Historical Context outside of clinical settings)

Talk About Ethical Procedures
& Systems of Accountability
(informed consent, Data &
Safety Monitoring Board)
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
 "There are still too many questions about
Truvada's overall effectiveness."

 Truvada has been proved to be safe and

effective for prevention when taken as
prescribed. In demonstration projects, those
who adhered to taking the medication at least
four times a week had zero HIV infections
(Londovitz, 2014).
 Acknowledge Use Resources to Train &
Employ Community Leaders
Doubt/Distrust Without to Teach About Biomedical
Being Dismissive Research & Interventions

Acknowledge Origins of Build Trust With Providers

Medical Mistrust in & Black Patients (inside &
Historical Context outside of clinical settings)

Talk About Ethical Procedures
& Systems of Accountability
(informed consent, Data &
Safety Monitoring Board)
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
 "Truvada for PrEP is dangerous for your
kidneys/liver/etc."

 The PrEP studies about Truvada have shown

no liver or kidney toxicities, and very minor,
if any, side effects (Grant, et al., 2010).
(Gallant, et al, 2006).
 Acknowledge Use Resources to Train &
Employ Community Leaders
Doubt/Distrust Without to Teach About Biomedical
Being Dismissive Research & Interventions

Acknowledge Origins of Build Trust With Providers

Medical Mistrust in & Black Patients (inside &
Historical Context outside of clinical settings)

Talk About Ethical Procedures
& Systems of Accountability
(informed consent, Data &
Safety Monitoring Board)
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
 "Condoms are more effective than PrEP."

 When used as directed, Truvada for PrEP is

more than 20 percent more effective at
protection against HIV than the standard
usage of condoms (Smith, 2013)
◦ This is compared to the typical use condoms.
◦ When condoms are used consistently and correctly,
they are more effective in preventing HIV & STIs
 Acknowledge Use Resources to Train &
Employ Community Leaders
Doubt/Distrust Without to Teach About Biomedical
Being Dismissive Research & Interventions

Acknowledge Origins of Build Trust With Providers

Medical Mistrust in & Black Patients (inside &
Historical Context outside of clinical settings)

Talk About Ethical Procedures
& Systems of Accountability
(informed consent, Data &
Safety Monitoring Board)
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
 Medical racism & Black distrust in the biomedical
research is multifaceted
 Several social, cultural, economic, political, and
educational issues make it complicated & even
difficult to discuss
 We cannot end the HIV/AIDS epidemic (nationally
or globally) without learning to engage
African/Black populations
 We must acknowledge the traumatic experiences
of Black people & find culturally competent ways
of engaging them in health education & advocacy
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.

Wall, Lewis L. (2006). The Medical Ethics of Dr J. Marion Sims: a fresh look at the historical
record. Journal of medical ethics 32.6: Pages 346-350.

Washington, Harriet A. (2006). Medical apartheid: The dark history of medical experimentation on
Black Americans from colonial times to the present. Doubleday Books.