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Engaging People of Color in Research

Engaging People of Color in Research. Presented By Phill Wilson, The Black AIDS Institute & Christine De Shay, Black AIDS Institute and UCLA The HIV Catalyst Research Forum April 23, 2010. Introduction: Setting the Case. The Black AIDS Institute We Are:

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Engaging People of Color in Research

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  1. Engaging People of Color in Research Presented By Phill Wilson, The Black AIDS Institute & Christine De Shay, Black AIDS Institute and UCLA The HIV Catalyst Research Forum April 23, 2010

  2. Introduction: Setting the Case • The Black AIDS Institute • We Are: • Founded in May of 1999, the Black AIDS Institute is the only national HIV/AIDS think tank in the U.S. focused exclusively on Black people. • We Do: • Our mission is to stop the AIDS pandemic in Black communities by engaging and mobilizing traditional Black leaders, institutions and individuals in efforts to confront HIV. The Institute interprets public and private sector HIV policies, conducts trainings, offers technical assistance, disseminates information and provides advocacy mobilization from a uniquely and unapologetically Black point of view. • We Believe: • Our motto : "Our People, Our Problem, Our Solution."  

  3. The united states of black America: a Face • Left Behind: What if Black America were a country unto itself? • Life Expectancy: • 72.5 years,105th amongst countries; 5.2 years lower than Caucasian • Population: • 35th amongst countries, it makes up 14% of USA population, and equals the sum of the Northeast’s (New York, Massachusetts, Connecticut, Rhode Island, New Hampshire, Vermont, and Maine’s) inhabitants combined. • Economy: • 28th Largest economy in the world

  4. THE united states of black America: a perspective • Social Determinants • Dynamics: Culture & History • Socio-economics & Health • Lower income is directly related to quality of health, and having health insurance • Past instances- many specifically related to research (the Tuskegee Experiment) have founded a general mistrust of government and health facilities. • Risk behaviors v.s. Risk Environment • Black HIV/AIDS Organizations • Out of the over 500 national HIV treatment, service, and advocacy organizations, a mere 10 of them are Black organizations…that is > 1%.

  5. THE united states of black America: a perspective • Attitudes and Beliefs • Dynamics: Culture & History • Behavior Taboos • Sexual Orientation and Religion in Black culture • Urban Myths and Truths • Conspiracy Theories • How do beliefs about HIV origins, rates and modes of transmissions, and government intentions effect risk behaviors?

  6. THE united states of black America: Representation • History & Culture • Misgivings & Bitterness of the Government and Medicine • Truth v.s. Urban legends • Tuskegee Study • “Miss Evers Boys” • A legacy of distrust • Conspiracy theories • Origins of HIV • HIV engineered/spread by the government • HIV as a plot to extinguish Black America

  7. THE united states of black America: Representation • History & Attitude • From Slavery, to Jim Crow, to Extinction? • Mistrust • Genocide • 67% of African Americans polled, compared to 34% of Whites, believe the government is not telling the public the “whole story” regarding AIDS (Herek and Glunt) • 20% Blacks (compared 4% Whites) surveyed believed that “a lot of information about AIDS is being held from the general public”. (Herek & Capitanio) • 44% of Blacks polled believed that HIV was created in a germ-warfare laboratory (Thomas & Quinn) • 25% of Blacks surveyed believed that “AIDS was intended to wipe blacks off the face of the planet”. (Thomas & Quinn)

  8. THE united states of black America: Representation (J Nat! Med Assoc. 2003;95:1057-1065.)

  9. THE united states of black America: Representation • Attitudes & Actions • The relationship between conspiracy beliefs regarding the origins of HIV held by young adult African Americans, and the influences on sexual behavior. • No research had been conducted prior to study this relationship • The results showed significant connections between beliefs and behaviors

  10. Disproportion in transmission & risk , and the connection to disparity in clinical research

  11. More than ONE MILLIONAmericans are now living with HIV/AIDS Among those living with HIV/AIDS … About HALF are not receiving regular care ONE IN FIVE do not know they are positive U.S Centers for Disease Control & Prevention The Big Picture Every 9 ½ min in the U.S. someone is infected with HIV

  12. HIV In Black America:An Epidemiological Report HIV Prevalence Projected number of people HIV+ in the United States to date Estimated 21% are undiagnosed 1.1 million people are HIV+ Source: CDC, HIV Prevalence Estimates—United States, 2006, MMWR, 57(39);1073-1076.

  13. Percent of AIDS Cases, Adults & Adolescents by Race 70% 60% Black 50% 40% White 30% 20% Hispanic 10% 0% 1985 2007 Year of Diagnosis America’s Two Epidemics U.S Centers for Disease Control & Prevention, 2007

  14. HIV Incidence Proportions of new HIV infections by Race/Ethnicity (per 100,00 people) Blacks: 83.7 Latinos: 29.3 Native Americans: 14.6 Whites: 11.5 Asian/Pacific Islander: 10.3 Source: Hall HI, Song R, Rhodes P, et al. Estimation of HIV Incidence in the United States. JAMA. 2008;300:520–529.

  15. Rate of New HIV infection per 100,000 Persons Blacks 83.7 Latinos White Blacks are nearly 3x as likely to contract HIV as Hispanics, and 7x as likely as whites 29.3 11.5 Blacks More Likely to Contract HIV/AIDS U.S Centers for Disease Control & Prevention, 2006

  16. White 35% 66% 45% Black 12% Latino 15% 17% Other New Infections U.S. Population Source: CDC, HIV Prevalence Estimates—United States, 2006, MMWR, 57(39);1073-1076.

  17. Deaths per 100,000, Ages 25-44 32.9 Blacks Latinos White 19.9 7.6 2.5 1.0 4.3 Males Females Blacks More Likely to Die as Result of AIDS Black men are 8x as likely to die as whites, and 4x as Latinos. Black women are 19x as likely to die as whites, and 8x as Latinos. U.S Centers for Disease Control & Prevention, 2006

  18. 35% Black Female 65% Black Male New HIV Infections Among Blacks by Gender Black women account for two-thirds of new HIV infections among women overall U.S Centers for Disease Control & Prevention, 2006

  19. New HIV Infections Among Blacks by Transmission MSM-IDU 3% IDU 14% Heterosexual 43% Men having sex with men (MSM) 41% HIV is primarily spread through sexual transmission U.S Centers for Disease Control & Prevention, 2006

  20. 50+ 10% 13-29 38% 40-49 24% 30-39 27% New HIV Infections Among Blacks by Age Younger Blacks represent largest share of new HIV infections … Though most Blacks who are newly infected are over the age of 30 … with 1 in 3 40 or older. U.S Centers for Disease Control & Prevention, 2006

  21. (textured portion indicates close friend or family member) 58% 43% 37% 38% 20% 19% Black Latino White When AIDS Hits Home Percent knowing someone with HIV or who has died from AIDS 2009 Survey of Americans on HIV/AIDS, Kaiser Family Foundation

  22. 56% Greater impact 68% About the same impact 27% 24% All Black Americans • Smaller impact 2% 0% 15% Don’t know/ Refused 8% Awareness About Impact on Black America As far as you know has AIDS had a greater, smaller or about same impact on Blacks as compared to other racial / ethnic groups in the U.S.? 2009 Survey of Americans on HIV/AIDS, Kaiser Family Foundation

  23. How to Achieve Progress • Develop culture of Treatment advocacy in Black America

  24. THE united states of black America: Participation Representation through participation Challenges in Recruitment for Clinical Trials Socioeconomic challenges Poverty Lack of adequate medical care Nutrition Social & environmental factors

  25. THE united states of black America: Participation Representation through Participation Challenges in Clinical Trial recruitment, cont. Lack of Health literacy Lack of Peer Navigators Lack of Peer Advocacy

  26. THE united states of black America: Participation Clinical Trials- Challenges and Participation Solution? Black Treatment Advocates Network: BTAN

  27. Background • Black Americans represent the largest group impacted by HIV/AIDS, but remain the least in care • Black Americans = 13% of population, yet 51% of people with HIV/AIDS (CDC) • Treatment advances have resulted in declines of more than 70% in the national rate of AIDS deaths, but Black Americans are not benefiting equally from the treatment breakthroughs • Very few community-based treatment advocacy initiatives are rooted in agencies focused on Black communities

  28. Defining the Initiative Rationale: Mobilizing existing community leaders with appropriate training could create the backbone of a new era in Black American HIV/AIDS advocacy Initiative: The Black AIDS Institute through funding and partnership from Merck will develop and mobilize a national network of black treatment and care advocates, the Black Treatment Advocates Network (BTAN)

  29. Insights Inform Strategies

  30. 2010 BTAN Goals Objectives • Design and launch national Network of influential peers within the Black American community to: • Increase HIV science literacy in Black Communities • Expand the diversity of the CAB pipeline • Increase representation of Black Americans in clinical trials • Increase HIV testing in Black America • Increase utilization of care and treatment in Black communities • Increase support for Black treatment advocates • Support link to the healthcare system and the bridge into quality care • Dispel myths about care and treatment

  31. Informing Development of the Network: What is the Need? • What do Black American HIV/AIDS Advocates need to know? • What are the current strengths and challenges of Black American HIV/AIDS Advocates? • What is the baseline of knowledge in advocacy community for • Science of HIV/AIDS • HIV/AIDS Treatment • HIV/AIDS Community Action • What resources are currently available? • What resources are needed? • What can a National Black Treatment Advocates Network achieve in the first two years.

  32. 2010 Key Initiative Activities • Selection of core Network member organizations/ pilot cities • Development of Network training curriculum, selection of training faculty; execution of local pilot trainings • Post-training, initiation of core Network pilot programs • Launch of National network website; inaugural WebEx for participants nationwide • Host initial Science Academy

  33. BTAN components Local Trainings National Gathering Qtrly updates Websites Monthly Webanars Mentoring and Buddy program Science & Treatment College

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