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Stigma and the Impact on Public Health

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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 The National Alliance of State and Territorial AIDS Directors (NASTAD) represents the nation's chief state and territorial health agency staff (AIDS directors) who have programmatic responsibility for administering HIV/AIDS and viral hepatitis healthcare, prevention, education, and supportive service programs funded by state and federal governments. In working closely with its members, NASTAD is dedicated to reducing the incidence of HIV/AIDS and viral hepatitis infections in the United States, providing comprehensive, compassionate, and high-quality care and prevention services to all persons living with HIV/AIDS and viral hepatitis, and ensuring responsible and sound public policies. NASTAD provides national leadership to achieve these goals and to educate about and advocate for the necessary federal funding and policies to achieve them, and promotes communication between state and local health departments and HIV/AIDS and viral hepatitis prevention and care and treatment programs. NASTAD supports and encourages the use of applied scientific knowledge and input from affected communities to guide the development of effective policies and programs. 2

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. As noted by President Barack Obama, the vision for the National HIV/AIDS Strategy In order for our country to “become a place where new HIV infections are rare” we must ensure that every person has “unfettered access to high quality, life-extending care, free from stigma and discrimination.“ It is with those marching orders that we move forward our stigma work at NASTAD and NCSD. 3

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. In conjunction with National Gay Men’s HIV/AIDS Awareness Day (NGMHAAD), NASTAD and the National Coalition of STD Directors (NSCD) released “Getting to Zero: Scaling-up Health Department HIV Strategies for Gay Men/MSM”. The statement is a joint policy statement calling on health departments to take six steps to respond to the ongoing HIV and STD epidemics among gay men/MSM: Promote health strategies that support gay men’s health equity Build and further strengthen the capacity of state and local health departments to address the HIV and STD crisis among gay men/MSM Create an integrated and coordinated response across communicable disease areas that disproportionately impact gay men/MSM Enhance mental health and substance abuse service capacities to respond to the unique needs of gay men/MSM Improve data collection systems that provide an enhanced understanding of the health, social, and structural realities of gay men/MSM Implement comprehensive strategies and initiative advocacy efforts to better address the epidemic among gay men/MSM The statement builds on the “Statement of Urgency: A Crisis Among Gay Men,” released by NASTAD and NCSD in Furthermore, this joint policy statement reflects the dramatic changes in the HIV/AIDS policy and research landscape with the release of the National HIV/AIDS Strategy, a focus on High Impact Prevention activities by the Centers for Disease Control and Prevention (CDC), emerging biomedical prevention tools such as Pre-Exposure Prophylaxis (PrEP), and the implementation of the Affordable Care Act.

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 level and 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
In July 2012, the Centers for Disease Control and Prevention released a comprehensive analysis showing that only one-quarter of the 1.1 million Americans living with HIV have their virus under control. The study, based on HIV prevalence data from 2009 and other data sources, includes information on the proportion of people engaged in each of the five main stages of HIV care: HIV testing and diagnosis Linkage to care for those who test positive Retention in care over time Provision of antiretroviral therapy Achieving “viral suppression,” by using treatment to keep HIV at a level that helps individuals stay healthy and reduces the risk of transmitting the virus to others To reduce the impact of HIV in the United States, improvements are needed at each stage of the process with particular efforts to reduce disparities. HIV testing is a first critical step in HIV prevention. In addition, ensuring that people have access to care, stay in care and remain on treatment will increase the proportion of HIV-infected individuals who achieve and maintain viral suppression, which is critical to improve health and realize the full potential prevention benefits of treatment. A stigmatizing social environment poses barriers at all stages. HIV-related stigma and discrimination undermine prevention efforts by making people afraid to find out whether or not they are infected, to seek out information about how to reduce their risk of exposure to HIV, and to change their behavior to more safe behavior lest this raise suspicion about their HIV status. Thus, stigma and discrimination undermine the ability of individuals and communities to protect themselves.. The fear of stigma and discrimination also discourages people living with HIV from disclosing their HIV infection and may them from seeking treatment, care and support. 7

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 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 Convene a “stigma summit” with health department staff, community stakeholders and medical providers Develop and conduct a national stigma survey to measure the prevalence and impact of stigma Convene “Blue Ribbon Panel” of experts in HIV and STD prevention and care Conduct at least two “Ask, Screen & Intervene” Develop and disseminate an “Optimal Care Checklist”

12 Stigma on Prevention: Homophobia & Racism
Homophobia & racism impact HIV prevention efforts in three ways: Sexual silence Disclosure and coming out Community mobilization sexual silence inability to talk about sexuality within Black and Latino communities is a major factor that hinders HIV prevention efforts. community-level homophobia diminishes open, meaningful dialogues about homosexuality and sexual behaviors in which gay men engage instead of talking about sexuality in an open and healthy manner, discussions are more focused on Black and Latino gay men as engaging in deviant behaviors that propagate HIV within the community disclosure and coming out fear of social isolation and physical harm make Black and Latino MSM uncomfortable disclosing same-sex sexual behaviors and coming out as gay men community mobilization efforts to mobilize Black and Latino gay men are hindered by community-level homophobia experiences of racism within the gay community can lead Black and Latino gay men to distance themselves from the mainstream gay community and mobilize around issues it supports (e.g., gay marriage)

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 accelerated childhood and adolescence for young black men intense pressures for young Black men to engage in masculine behaviors (i.e., being tough, not crying, etc.) “…Black little boys, particularly, never get to be little boys. You’re always ‘little man’ from the time you can walk...If you fall down, you can’t cry.” young Black gay men, notably those who are effeminate, face social isolation, bullying, and physical violence that increase HIV risk socially-rooted expectations for heterosexual marriage and fatherhood expectation that black men “find a [wife], have a bunch of kids and then carry on that proud black line;” this expectation is reinforced given the current rate of incarceration among Black men being gay means being a disappointment to your family, the Black community, society, etc.

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 reduced condom use requests for condom use can lead to assumptions about HIV serostatus lack of dialogue among HIV-negative and HIV-positive gay men Black and Latino gay men are less likely than other gay men to disclose their HIV status to family, friends, health care professionals, and sex partners increased community viral load HIV/AIDS stigma prevents gay men from getting testing for HIV, and from accessing and adhering to treatments “[HIV-positive Black MSM] don’t want to be identified as HIV-positive. They don’t want to show up in a clinic or a medical setting where it’s just no question about why you are there”

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 Stigma survey items were developed by the NASTAD Policy & Health Equity team, 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 to gauge response level and clarity of survey questions 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 Demographic Variable N % Age group 18-24 25-44
45-64 65 or older 29 560 656 56 2% 43% 50% 4% Racial/ethnic group African-American/Black Hispanic White Other 254 179 764 80 19% 14% 60% 6% Gender Male Female Transgender or Other 541 734 16 42% 57% 1%

20 Survey Respondents (cont’d)
Demographic Variable N % Education High school/GED or less College or vocational training Graduate school 37 599 667 3% 46% 51% Employment status Currently employed 1,232 94% HIV Status HIV-negative HIV-positive Unknown HIV status 1,004 230 29 80% 18% 2%

21 Survey Respondents (cont’d)
Demographic Variable N % Sexual Orientation Gay/lesbian/homosexual Bisexual Heterosexual 443 71 750 35% 6% 59% Profession Health dept. manager or staff CBO manager or staff Health provider Community member Researcher 323 336 232 216 73 27% 29% 20% 18% Neighborhood Urban Suburban Rural 644 412 228 50% 32%

22 Average Stigma Scores

23 Findings – States w/ 25+ Responses
States significantly differed on the stigma scale and each of the four subscales Lowest perceived stigma (overall): Massachusetts, California, Connecticut, Washington Highest perceived stigma (overall): Kentucky, Michigan, Alabama, South Carolina HIV-related stigma: Lowest: Massachusetts, Washington, California, Texas Highest: Alabama, Virginia, Michigan, South Carolina

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. In response to the increase rates of STD and HIV infection among Black and Latino Men who have Sex with Men (BLMSM), NCSD and NASTAD have created the Optimal Care Checklists (OCC). The OCCs were designed to facilitate a more comfortable sexual health conversation for gay men/MSM patients and his Provider. Both tools stress the importance of decreasing stigma and promoting a non-judgmental environment. The provider document gives some sample questions to ask clients using the 4 Ps format of partners, practices, past history and protection

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. The patient document says “your doctor should ask you these type of questions, if not please be prepared to offer this information to your doctor so that s/he can provide you the best care.”

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. Build an understanding of and commitment to stigma „„ and discrimination reduction by using 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. Facilitate the inclusion of stigma/discrimination reduction in national HIV strategic planning, funding and programming activities. Ensure that planning, funding and programming efforts include attention to stigma and discrimination and support the implementation of promising programmes to address 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). 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). Create and/or support awareness on stigma and discrimination “Know your rights” campaigns 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. Work within a Cultural Framework to Address Stigma Stigma needs to be addressed at the community level. Rather than rejecting cultural values, HIV prevention efforts should focus on the expression of those attitudes and encourage positive, culturally-appropriate messages about HIV prevention. For example, HIV prevention providers can encourage those voices within the community that are striving to create positive, non-stigmatizing messages. Or facilitate collaboration between communities that are seeking to mobilize a non-stigmatized response to the AIDS epidemic. Normalize HIV Testing. There are various immunizations and screenings that are provided to individuals at their physician's offices. Why isn't HIV testing consistently one of those screens? The normalization of HIV testing could increase the number of individuals living.

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.  Target Prevention Messages at People Who Are HIV+ and HIV-. HIV prevention messages are most effective when they are ongoing and consistent, although they should vary in venue and presentation. Stigma also impacts people living with HIV/AIDS and may prevent them from seeking prevention services. 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 HIV prevention providers have found that HIV prevention is not the highest priority in the lives of the people they serve. It is important to meet the needs of the targeted population first. In various communities, from youth to African-American and Latina women, prevention providers have found that providing a safe space in the community for a discussion of meaningful issues can engender trust between HIV prevention providers and the community. After gaining that trust, HIV prevention providers can begin to discuss HIV transmission. HIV testing may be the last component of HIV prevention programs.

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. Increase Cultural and Media Exposure of People Living with HIV/AIDS Exposure to the personal experiences of people living with HIV and AIDS can have a profound impact on individual and com-munity perceptions of HIV/AIDS. Similarly, media representation of people living with HIV/AIDS increases cultural exposure to AIDS and may reduce some of the stigma surrounding the disease. Both national and local media can provide opportunities for people living with HIV/AIDS to share their life experiences with a broader audience. Increase Coordination Between Community-Based Organizations, Funders and HIV Prevention Providers All of the recommendations discussed above are components of successful HIV prevention strategies that reduce stigma and reach communities in need. In order to combat stigma, it is important for all of the interested parties to work together to promote a greater understanding of, and exposure to, HIV/AIDS. While stigma is a product of broader social problems such as homophobia, illness, and ignorance, it is imperative to address stigma in HIV prevention immediately in order to limit the number of new HIV infections in this country.

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) Key Programmes to Reduce Stigma and Discrimination and Increase Access to Justice in National HIV Responses. UNAIDS (2011) This toolkit is for people working to establish, strengthen or expand HIV-related legal services. All governments have recognized that stigma, discrimination and violations of other human rights are major barriers to effective national responses to HIV. Consequently, they have committed to protect the human rights of people living with HIV, as well as the rights of women, children, and members of vulnerable and key populations in the context of HIV. Reducing HIV Stigma and Discrimination: A Critical Part of National AIDS Programmes: A Resource for National Stakeholders in the HIV Response. UNAIDS (2007) Despite the pervasiveness of HIV-related stigma and discrimination in national HIV epidemics and their harmful impact in terms of public health and human rights, they remain seriously neglected issues in most national responses to HIV. Taking Action against HIV Stigma and Discrimination. DFID (2007) This paper highlights best practice responses to stigma and discrimination and provides guidance on how DFID can help build further evidence and accelerate action for change. Though this guidance has been developed specifically for DFID staff, it will be of interest and benefit for others working on HIV and AIDS.  

39 Thank You Dana Cropper Williams Francisco Ruiz
Jermel Wallace For more information:


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