1. 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.  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.  Left Behind: What if Black America were a country unto itself?  Life Expectancy: 72.5 years,105 th amongst countries; 5.2 years lower than Caucasian  Population: 35 th 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: 28 th Largest economy in the world

4.  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.  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.  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.  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. (J Nat! Med Assoc. 2003;95:1057-1065.)

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

12. 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. America’s Two Epidemics U.S Centers for Disease Control & Prevention, 2007 Black Hispanic White 0% 20% 10% 30% 40% 50% 60% 70% 20071985 Year of Diagnosis Percent of AIDS Cases, Adults & Adolescents by Race

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

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

17. Blacks Latinos White Deaths per 100,000, Ages 25-44 32.9 7.6 4.3 Males 19.9 Females 2.5 1.0 Blacks More Likely to Die as Result of AIDS U.S Centers for Disease Control & Prevention, 2006 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.

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

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

20. 13-29 38% 30-39 27% 40-49 24% 50+ 10% 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 … U.S Centers for Disease Control & Prevention, 2006 with 1 in 3 40 or older.

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

22. 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.? All Black Americans Awareness About Impact on Black America 0% 8% 24% 68% About the same impact Greater impact Don’t know/ Refused Smaller impact 15% 2% 27% 56% 2009 Survey of Americans on HIV/AIDS, Kaiser Family Foundation

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

24.  Representation through participation  Challenges in Recruitment for Clinical Trials Socioeconomic challenges Poverty Lack of adequate medical care Nutrition Social & environmental factors

25.  Representation through Participation  Challenges in Clinical Trial recruitment, cont. Lack of Health literacy Lack of Peer Navigators Lack of Peer Advocacy

26.  Clinical Trials- Challenges and Participation  Solution? Black Treatment Advocates Network: BTAN

27.  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. 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. InsightsStrategies  Few well trained black treatment advocates exist due to the lack of training and infrastructure  Support training efforts that create a network of care and treatment advocacy  HIV related stigma and general distrust of healthcare systems create enormous barriers to testing and care  Focus education efforts in small number of high prevalence communities to optimize impact  Peers are among the most effective at bringing new patients into the care system  Identify and mobilize black peers to engage patients in care Identify Needs Build a Program

30.  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.  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.  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