Stigma and the Impact on Public Health

1. Stigma and the Impact on Public Health 2012 Ryan White HIV/AIDS Program Grantee Meeting Wednesday, November 28, 2012 Marriott Wardman Park Hotel, Washington, DC

2. Mission NASTAD strengthens state and territory-based leadership, expertise and advocacy and brings them to bear on reducing the incidence of HIV and viral hepatitis infections and on providing care and support to all who live with HIV/AIDS and viral hepatitis Vision NASTAD’s vision is a world free of HIV/AIDS and viral hepatitis

3. National HIV/AIDS Strategy The United States will become a place where new HIV infections are rare and when they do occur, every person, regardless of age, gender, race/ethnicity, sexual orientation, gender identity or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination.

4. Getting to Zero In conjunction with National Gay Men’s HIV/AIDS Awareness Day, NASTAD and the National Coalition of STD Directors (NCSD) released a policy statement this month calling on health departments to take six steps to respond to the ongoing HIV and STD epidemics among gay men/MSM.

5. Stigma Overview • What is stigma? • “An attribute that links a person to an undesirable stereotype, leading other people to reduce the bearer from a whole and usual person to a tainted, discounted one.” Erving Goffman (1963) • Stigma exists and is practiced at the individual leveland at the institutional and community levels

6. Stigma Overview • What do we mean when we talk about INSTITUTION-LEVEL stigma? • Stigma as a feature of cultural groups, neighborhoods, communities, & organizations • Anti-immigrant legislation serve as barriers to testing, prevention and adherence to medical care and treatment for Latino immigrants

7. Estimated Number and Percentage Engaged in HIV Care

8. MAC AIDS Fund (M·A·F) • M.A.C. Cosmetics is currently the leading non-pharmaceutical corporate fundraiser for HIV/AIDS worldwide and has raised over $224 million dollars to date thanks to the VIVA GLAM campaign. • MAC AIDS Fund (M·A·F) was established in 1994 and donates funds to communities that offer services and help to and prevent the HIV/AIDS through educational programs and services.

9. VIVA GLAM • VIVA GLAM is the backbone for M·A·F and was launched in 1994. • VIVA GLAM is a line of lipsticks and lip-glosses from which every cent of the sale price goes to help those living with HIV/AIDS around the world.

10. M·A·F Grant • In partnership with the National Coalition of STD Directors (NCSD), NASTAD was awarded funding from M·A·F to explore stigma affecting Black and Latino gay men/MSM. • The grant work mounts an unprecedented, aggressive, targeted effort across the silos of HIV and STD prevention, treatment & care, to examine and address stigma in public health practice.

11. Goals of Stigma Work • Increase comprehensive access to prevention, care and supportive services for HIV positive and negative Black and Latino gay men/MSM • Target social and sexual networks to promote positive sexual health messages • Establish and promote evidence-based practices and tools to educate NSCD and NASTAD members, key community stakeholders, and public health providers

12. Stigma on Prevention: Homophobia & Racism • Homophobia & racism impact HIV prevention efforts in three ways: • Sexual silence • Disclosure and coming out • Community mobilization

13. Stigma on Prevention: Femininity • Stigma related to femininity affects HIV prevention efforts in two ways: • Accelerated childhood and adolescence for young black men • Socially-rooted expectations for heterosexual marriage and fatherhood

14. Stigma on Prevention: HIV/AIDS • HIV/AIDS stigma affects HIV prevention efforts in three ways: • Reduced condom use • Lack of dialogue among HIV-negative and HIV-positive gay men • Increased community viral load

15. Goal of Stigma Survey • The goal of the survey was to assess stigma at the institution/community levels • Survey explores a broad range of types of stigma, including: • Stigma related to HIV/AIDS • Stigma related to same-sex sexuality/homophobia • Stigma related to gender performance/femininity (among MSM) • Stigma related to race /racism • Items in survey focus on institutional and community practices (i.e., as opposed to individual-level behaviors)

16. Development of the Stigma Survey • Stigma survey items were developed by the NASTAD staff, with the input from consultants • Focus group and interview data from NASTAD’s work with Black & Latino MSM was reviewed • Related measures, including the Kessler (1999) stigma scale and Herek & Glunt (1995) internalized homophobia scale, were drawn upon • Expert review and input • The survey was piloted with two jurisdictions (n=56) during October 2011 • Survey was refined based on the pilot data

17. Sample Questions • People in my community think that gay men/MSM who take the receptive role (i.e. are 'the bottom') in sexual relations are less masculine than men who take the insertive role (i.e., are 'the top'). • In my community, fear of others finding out that they are HIV-positive stops many gay men/MSM from getting HIV treatment and care. • In my community, most Black and Latino gay men/MSM face racism from the local, mainstream gay community.

18. Survey Launch • Launched on December 1, 2011 and closed on January 31, 2012 • 1,314 respondents completed the survey • 54 different states/territories represented in the survey • 18 states had 25 or more respondents with completed surveys • Alabama, California, Connecticut, Florida, Illinois, Kentucky, Maryland, Massachusetts, Michigan, New York, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee, Texas, Virginia, and Washington

19. Survey Respondents

20. Survey Respondents (cont’d)

21. Survey Respondents (cont’d)

22. Average Stigma Scores

23. Findings – States w/ 25+ Responses

24. Findings – Region • Participants from different geographic regions showed significant differences perceived stigma • Those from the South and Midwest reported significantly higher levels of HIV-, gender-, and sexuality-based stigma than those from the West and Northeast

25. Findings – Racial/Ethnic Group • Across domains, participants from different racial/ethnic groups had significantly different perceptions of stigma • A consistent trend was that white participants expressed the lowest levels of stigma, while Black participants perceived the highest levels

26. Findings – Racial/Ethnic Group • HIV-related stigma: • Black participants perceived significantly higher levels than White, Hispanic/Latino, and “Other” race participants • Gender-based stigma: • Latino and Black participants perceived significantly higher levels than white and “Other” race participants • Race/ethnicity-based stigma: • Latino, Black, and “Other” race participants perceived significantly higher levels than white participants

27. Findings – Gender • Gender group differences were observed for gender-based stigma, race/ethnicity-based stigma, and overall perceived stigma • Transgender respondents consistently reported higher levels of gender- and race/ethnicity-based stigma than other respondents

28. Findings – HIV Status • Across domains, participants from different HIV status groups had significantly different perceptions of stigma • HIV-positive participants perceived higher levels of HIV-, gender-, race/ethnicity-, and sexuality-based stigma; unknown status participants perceived the lowest levels of stigma

29. Findings – Sexual Orientation • Differences among sexual orientation groups were observed for gender-, race/ethnicity-, and sexuality-based stigma, and overall perceived stigma • Overall, sexual minority participants perceived more stigma than heterosexual participants

30. Findings – Profession/Job • Participants from different professional backgrounds were significantly different on perceptions of stigma • Participants who worked in CBOs perceived significantly higher levels of race/ethnicity- and HIV-based stigma than participants from the health department • However, there were no significant differences by profession on overall stigma, gender- or sexuality-based stigma

31. Optimal Care Checklist:Provider The provider OCC document serves as a tool to familiarize providers with the unique sexual health needs of Black and Latino gay men/MSM.

32. Optimal Care Checklist: Patient The patient OCC document informs Black and Latino gay men/MSM about HIV and STD testing options, vaccinations (e.g., Hepatitis A & B), and other sexual health information.

33. 10 Actions to Reduce Stigma • Build an understanding of and commitment to stigma and discrimination reduction. Use existing tools for measuring stigma and discrimination to “know your epidemic” in terms of the prevalence of stigma and discrimination and their impact on the response to HIV and STD. • Facilitate the inclusion of stigma/discrimination reduction in HIV and STD strategic planning, funding and programming activities. Ensure that planning, funding and programming efforts include attention to stigma and discrimination.

34. 10 Actions to Reduce Stigma (continued) • Use or promote approaches that address the root causes of stigma and discrimination. Implement programs that tackle the actionable causes of stigma (e.g., lack of awareness of stigma and discrimination and their negative consequences). • Advocate for a multifaceted approach to stigma and discrimination. A response which employs a range of approaches will have the greatest impact (e.g. “know your rights” campaigns; social mobilization and media campaigns; legal support to those affected by stigma and discrimination).

35. 10 Actions to Reduce Stigma (continued) • Work within a cultural framework to address stigma. Stigma needs to be addressed at the community level. HIV prevention providers should focus on the expression of those attitudes and encourage positive, culturally-appropriate messages about HIV and STD prevention. • Normalize HIV testing. While there are significant issues with insurance coverage of HIV testing and confidentiality of test results, the normalization of HIV testing could increase the number of individuals living with HIV who know their status.

36. 10 Actions to Reduce Stigma (continued) • Target prevention messages at people who are HIV+ and HIV-. The development of prevention messages for people living with HIV/AIDS must acknowledge AIDS stigma and promote non-stigmatizing images of people living with HIV/AIDS. • Successful HIV prevention outreach may not even mention AIDS. It is important to meet the needs of the targeted population first. After gaining that trust, HIV prevention providers can begin to discuss HIV transmission. 

37. 10 Actions to Reduce Stigma (continued) • Increase cultural and media exposure of people living with HIV/AIDS. Media representation of people living with HIV/AIDS increases cultural exposure to AIDS and may reduce some of the stigma surrounding the disease. • Increase coordination between community-based organizations, funders and HIV and STD prevention providers. It is important for all stakeholders to work together to promote a greater understanding of, and exposure to, HIV/AIDS.

38. Additional Resources on Stigma • Key Programmes to Reduce Stigma and Discrimination and Increase Access to Justice in National HIV Responses. UNAIDS (2011) • Reducing HIV Stigma and Discrimination: A Critical Part of National AIDS Programmes: A Resource for National Stakeholders in the HIV Response. UNAIDS (2007) • Taking Action against HIV Stigma and Discrimination. DFID (2007)

39. Thank You Dana Cropper Williams Francisco Ruiz dcropper@NCSDdc.org fruiz@NASTAD.org Jermel Wallace jwallace@NCSDdc.org jwallace@NASTAD.org For more information: www.NCSDdc.org www.NASTAD.org