Accessibility & Acceptability Effectively Reaching Communities

Jo A Valentine , MSWAssociate Director, Office of Health Equity

Division of STD Prevention, NCHHSTP

January 2012

National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention

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“It is a peculiar sensation, this double-consciousness, this sense of always looking at one’s self through the eyes of others, of measuring one’s soul by the tape of a world that looks on in amused contempt and pity.”

WEB Dubois, 1965

New York Times Book Review June, 1981

Science, 1999 Volume 285

The Tuskegee Syphilis Study is frequently described as the singular reason behind African American distrust of the institutions of medicine and public health. Such an interpretation neglects a critical historical point: the mistrust predated public revelations about the Tuskegee Study.

Vanessa N. Gamble, 2002

“The Negro men love to frolic with the women; and the women love to frolic with the men; so they frolic.”  

“The gravest problem to be faced in dealing with the Negro is not his or her industrial future or right to social equality with the white man or woman. It is the danger to the public of his or her contagiousness and infections from the standpoint of physical and moral disease.”

Myers, NJ. Black Hearts: The Development of Black Sexuality in America. British Columbia, Vancouver, Canada, Trafford Publishing, 2003.

Framing STD Disparities—Historical Context Early 20th Century

“We don’t criticize the existence of the government’s figures, but their accuracy is not good because their statistics are derived from studies only of those who are treated in public clinics.”

“There is some over-reporting from public clinics in the data we have and there are a number of biases in the data, but syphilis surveillance and reporting is better than for gonorrhea and Chlamydia.”

“There is a real dearth of scientifically arrived at knowledge of the social organization of blacks in America because there is no such thing as a monolithic black community.”

“If we frame the programs to focus on blacks in the south, then it will go nowhere among blacks in the south.”

What We Were Told…..

“Healthy Cultural Paranoia”

In the book, Black Rage, the authors described the tendency to be suspicious of or distrust institutions or agencies regarded as being “white” as “healthy cultural paranoia” that African Americans have developed over generations in response to racism, oppression, and discrimination

Grier and Cobbs, 1980

“The nine most terrifying words in the English language are: I’m from the government and I’m here to help.”

Ronald Reagan, Chicago, August 12, 1986

Some Lessons Learned about Reducing STD DisparitiesMultiple factors contribute to STD disparities

including social determinants, e.g.: – Racial inequality– High levels of uninsured– Low educational attainment – High incarceration rates

• To address STD disparities, involvement of affected communities at all steps in the process is required– Appropriate framing to minimize stigma

• Integration of strategies with HIV essential to maximize impact– “people should look into what can be done to

break down the silos of overlapping epidemics…”

Syphilis as a Social Disease

“To take on the task of eliminating syphilis, the consultants said, it is necessary to acknowledge that syphilis is first and foremost a social disease. In otherwise healthy individuals and communities, syphilis is a disease that is easily interrupted.” National Plan to Eliminate Syphilis from the U.S., 1999

Community Involvement & Organizational Partnerships

• Acknowledgement & response to the effects of racism, poverty, & other social issues on the persistence of syphilis• Development & maintenance of partnerships to increase access to prevention & care services

• Assurance that affected communities are collaborative partners in developing, delivering, & evaluating interventions

The Value of

Community Involvement The involvement of affected communities can:• facilitate more effective communication;• restore, build, and maintain trust;• improve access to utilization of services;• ensure the development of culturally competent

interventions; and• mobilize participation to develop community

capacity to eliminate syphilis.

Defining Community Participation

• Advise and Consent

• Endorse and Cooperate

• Advise, Guide, Support, Execute

• Define, Decide, Design, Analyze, and Interpret

Hatch, et.al, 1993

“Upstream Solutions”

“Despite general scientific agreement that the biological definition of “race” is an anachronism, modern-day medical journals remain replete with racialized studies that compare the health of blacks and whites without ever addressing the role of social class in producing disease in either blacks or whites.”

N. Krieger, 2004

What Do We About “Race”?

Social Determinants Affecting Individual Health

Social environment can determine the availability of healthy sexual partners Endemic high STD prevalence creates risk even for persons with one partner Limited availability of suitable partners can lead to imbalanced ratios of men to

women in many communities, impacting sexual networks and fueling STD spread

Challenging economic circumstances can increase risk for STDs if affordable quality health care is not accessible; and

Community mistrust/miscommunication between providers and patients can negatively affect the health care-setting interactions & lead to barriers to care-seeking

In the Grio By Monique W. Morris

on 06/30/2011

Do black men get better health care behind bars?

Washington Post Front-page January 22, 2012

“Rich or poor, educated or not, black women sometimes feel as though myths are stalking them like shadows, their lives a string of labels…”

“Take those like us who are willing to share and say we’ve had enough. We see what you’re doing. Let us be part of the reforms.”

Male Inmate, Guilford County, NC March 1998

For more information please contact Centers for Disease Control and Prevention

1600 Clifton Road NE, Atlanta, GA 30333Telephone: 1-800-CDC-INFO (232-4636)/TTY: 1-888-232-6348E-mail: cdcinfo@cdc.gov Web: http://www.cdc.gov

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention

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