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HIV Stigma and LGBT Communities

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HIV Stigma & LBGT Communities Shawn Demmons, MPH April 27, 2021 Shawn Demmons, MPH UCSF CAPS CBA Provider Trans Health Consultant Trans Activist 2 Bio: Shawn Demmons is a queer African American trans man committed to social and racial justice. Shawn is engaged in community activism aimed to improve the lives of those most marginalized in our society. He has organized and participated in numerous community events to increase public education and awareness about issues such as access to health care inside California prisons, linkage to care for newly diagnosed HIV positive individuals in low-income communities, and the social, political, economic marginalization of transgender individuals. Prior to joining the UCSF Center of Excellence for Transgender Health, Shawn served as the Chair of the Board Directors for the Transgender Law Center, and as a Program Manager with the San Francisco AIDS Foundation (SFAF) where he led programming designed to improve HIV-related health outcomes among African-American gay, bisexual, same-gender-loving men, and transgender/gender-variant individuals. Shawn has an undergraduate degree in Black Studies and a Masters in Public Health from San Francisco State University. Objectives Explore the current landscape for HIV stigma in LGBT healthcare Describe how HIV stigma can act as a barrier to care Identify culturally appropriate models and practices that address HIV-related stigma 3 Training Overview Define Stigma Types of HIV stigma Impact of stigma on LGBT health/access to care Impact of HIV stigma on HIV testing/PrEP uptake Strategies to address HIV stigma 4 State of LGBT Health MSM & HIV Disproportionally affected by HIV MSM represent 69% of new HIV diagnoses in 2018 in US Gay and bisexual men age 13-34 make up most new HIV diagnoses among MSM Estimate of Lifetime Risk for HIV 1:2 Black MSM 1:4 Latinx MSM Gay, bisexual, and other msm. (2020, May 07). Retrieved March 28, 2021, from https://www.cdc.gov/hiv/library/reports/hiv-surveillance/vol31/content/m...). 6 1 in 6 gay and bisexual men with HIV are unaware they have it. People who do not know they have HIV can't take advantage of HIV care and treatment and may unknowingly pass HIV to others A much higher proportion of gay and bisexual men have HIVcompared to any other group in the US. Therefore, gay and bisexual men have an increased chance of having a partner who has HIV. Gay, bisexual, and other msm. (2020, May 07). Retrieved March 28, 2021, from https://www.cdc.gov/hiv/library/reports/hiv-surveillance/vol-31/content/...). MSM & Engagement in Care 29% of Black MSM experienced stigma based on race and gay identity from providers 48% reported mistrust of medical establishments Black MSM with HIV who report higher levels of medical mistrust and stigma were less likely to have high CD4 counts Less than half of Latinx MSM with HIV are on ART LGB POC with HIV are twice as likely to experience abusive treatment by providers compared to their white counterparts Eaton, L. A., Driffin, D. D., Kegler, C., Smith, H., Conway-Washington, C., White, D., & Cherry, C. (2014). The Role of Stigma and Medical Mistrust in the Routine Health Care Engagement of Black Men Who Have Sex With Men. American Journal of Public Health, 105(2), e75e82. http://doi.org/10.2105/AJPH.2014.302322 Bogart, L. M., Landrine, H., Galvan, F. H., Wagner, G. J., & Klein, D. J. (May 01, 2013). Perceived Discrimination and Physical Health Among HIV-Positive Black and Latino Men Who Have Sex with Men. Aids and Behavior, 17, 4, 1431-1441. ASM/ICAAC: Racial Characteristics of FTC/TDF for Pre-exposure Prophylaxis (PrEP) Users in the US. (n.d.). Retrieved July 21, 2016, from http://www.natap.org/2016/HIV/062216_02.htm 7 Provider based stigma is associated with longer gaps in time between HIV care appointments Barriers to Care Lack of welcoming environment Lack of insurance Sexual Minority Stress: Sexual minority stress is a concept that encompasses pressures such as stigma, internalized homophobia/transphobia, and expectations of rejection. Sexual minority stress is thought to contribute to mental health problems and risky sexual behaviors Knight, D., & Jarrett, D. (2015, June 15). Preventive health care for men who have sex with men. Retrieved March 28, 2021, from https://www.aafp.org/afp/2015/0615/p844.html Trans People and HIV Nearly 1 million adults in the US are transgender HIV prevalence among trans people is 4x the national average From, 2009-2014, 2351 transgender people received an HIV diagnosis in the US 84% were trans women, 15% were trans men, and less than 1% had another gender identity About half of trans people who received a diagnosis lived in the South Transgender people. (2019, November 12). Retrieved March 28, 2021, from https://www.cdc.gov/hiv/group/gender/transgender/index.html 8 In the U.S. where HIV prevalence is 0.4%, prevalence among trans women is estimated to be 21% Estimated 28% of transgender women with HIV (56% of Black transgender women with HIV) Grant, J. M., Mottet, L. A., Tanis, J. J., & Min, D. (2011). Injustice at Every Turn: A Report of the National Transgender Discrimination Survey. National Center for Transgender Equality and National Gay and Lesbian Task Force. Trans People & Engagement in Care 70% of trans people have experienced discrimination in healthcare 28% delayed or postponed care 33% delayed or declined to access preventative care Lambda Legal. (2010). When Health Care Isn't Caring: Lambda Legal's Survey of Discrimination Against LGBT People and People with HIV. Retrieved from www.lambdalegal.org/health- care-report Nearly 90% believe the healthcare workforce isn't properly trained to care for trans people 50% report having to teach providers how to care for them and their unique healthcare needs Grant, J. M., Mottet, L. A., Tanis, J. J., & Min, D. (2011). Injustice at Every Turn: A Report of the National Transgender Discrimination Survey. National Center for Transgender Equality and National Gay and Lesbian Task Force. 9 Transgender women less likely to achieve viral suppression within 12 months of an HIV diagnosis compared to MSM Wiewel, E. W., Torian, L. V., Merchant, P., Braunstein, S. L., & Shepard, C. W. (2016). HIV Diagnoses and Care Among Transgender Persons and Comparison With Men Who Have Sex With Men: New York City, 20062011. American Journal of Public Health, 106(3), 497502. http://doi.org/10.2105/AJPH.2015.302974 PrEP and MSM Black and Latinx MSM were significantly less likely than white MSM To be aware of PrEP To have discussed PrEP with their provider To use PrEP (2017 CDC NHBS) White MSM who discussed PrEP with a provider were significantly more likely to use PrEP than Black MSM Racial/ethnic disparities in PrEP use might further increase disparities in HIV incidence Racial/Ethnic disparities in Hiv Preexposure PROPHYLAXIS among men who have sex with men - 23 urban areas, 2017. (2019, September 19). Retrieved March 28, 2021, from https://www.cdc.gov/mmwr/volumes/68/wr/mm6837a2.htm 10 These findings speak to the need to address racial/ethnic disparities in PrEP awareness, discussions with providers, and use Because disparities emerge at the point of discussion with providers, prevention efforts that increase awareness and discussion should include patients and providers Prevention efforts need to increase PrEP use among all MSM and target eliminating racial/ethnic disparities in PrEP use https://www.cdc.gov/mmwr/volumes/68/wr/mm6837a2.htm Even when discussed with providers, racial biases affect providers' willingness to prescribe PrEP Some providers believe Black MSM more likely than white MSM to engage in increased unprotected sex if prescribed PrEP, leading to a reduced willingness to prescribe PrEP Calabrese, S. K., Earnshaw, V. A., Underhill, K., Hansen, N. B., & Dovidio, J. F. (2014). The Impact of Patient Race on Clinical Decisions Related to Prescribing HIV Pre-Exposure Prophylaxis (PrEP): Assumptions About Sexual Risk Compensation and Implications for Access. AIDS and Behavior, 18(2), 226240. http://doi.org/10.1007/s10461-013-0675-x PrEP and Transgender People Only 3% of trans people who are high risk for HIV take PrEP Among trans people familiar with PrEP, 72% regarded it favorably Significantly more sexually active trans men (58%) than trans women (35%) were familiar with PrEP Trans people who tested for HIV and who experienced affirmation of their gender identity were more likely to use PrEP Sevelius, J. M., Poteat, T., Luhur, W. E., Reisner, S. L., & Meyer, I. H. (2020). HIV testing and prep use in a National probability sample of sexually Active transgender people in the United States. JAIDS Journal of Acquired Immune Deficiency Syndromes, 84(5), 437-442. doi:10.1097/qai.0000000000002403 11 Defining Stigma What is Stigma? Stigma involves the co-occurrence of several overlapping components, including: Distinguishing and labeling group differences Associating differences with negative attributes Separating "us" from "them" Status loss and discrimination In a context of power Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27(1), 363-385. doi:10.1146/annurev.soc.27.1.363 13 Stigma = attitudes and beliefs Discrimination = Behaviors resulting from those attitudes or beliefs A by-product of misinformation and broad societal acceptance of certain human characteristics or behaviors as inherently bad or spoiling of individual identity Stigmatization is entirely contingent on access to social, economic, and political power that allows the identification of differences, the construction of stereotypes, the separation of labeled persons into distinct categories, and full execution of disapproval, rejection, exclusion, and discrimination Stigma: A Multi-Level Construct Structural State Policies Institutional Practices InterpersonalAbuse, Rejection, Discrimination Individual Self-Stigma Disclosure 14 Societal-level conditions, cultural norms, and institutional policies and practices that constrain the opportunities, resources, and wellbeing of the stigmatized (Hatzenbuehler & Link, 2014, p. 1) The under- representation of [structural stigma] is a dramatic shortcoming in the literature on stigma, as the processes involved are likely major contributors to unequal outcomes (Link et al., 2004, p. 515). Structural: harmful laws/policies that criminalize PLWH Interpersonal: community attitudes and societal prejudices, misinformation and fear can manifest into violence directed at people with HIV especially those who have another marginalized identity i.e. LGBT Individual: internalized stigma may lead to avoidance of health services and nondisclosure Anticipated & Enacted Stigma Anticipated Stigma Involves the expectations of discrimination, stereotyping, and/or prejudice due to a mark of disgrace that sets a person apart from others Enacted Stigma Involves experiences of discrimination, stereotyping, and/or prejudice due to a mark of disgrace that sets a person apart from others 15 Health-related Stigma Health-related stigma is typically characterized by social disqualification of individuals and/or populations due to a specific health condition Characterized by social disqualification targeting other aspects of a person's identity (ethnicity, sexual orientation, gender, gender identity) that result in adverse effects on health Weiss MG, Ramakrishna J, Somma D. Health-related stigma: rethinking concepts and interventions. Psychol Health Med. 2006 Aug;11(3):277-87. 16 Health-related stigma: A social process or related personal experience characterized by exclusion, rejection, blame, or devaluation that results from experience or reasonable anticipation of an adverse social judgment about a person or group identified with a particular health problem. (Weiss and Ramakrishna, Lancet, 2006) Stigmatized health conditions Mental Health Substance use disorders Obesity Certain cancers (lung) HIV/AIDS Stigma & Access to Care Among LGBT People Homophobia: irrational fear of, aversion to, or discrimination against homosexuality or gay people Transphobia: irrational fear of, aversion to, or discrimination against transgender people Impact on Access to Care 15% postpone/avoid care 12% have to teach providers about their community to get adequate care 14% report providers being visibly uncomfortable due to their sexual orientation or gender identity 8% report harsh or abusive language from providers 7% reported unwanted physical contact by a provider 8% report providers intentionally refusing to recognize their family members Sharita Gruberg, L. (n.d.). The state of the LGBTQ community in 2020. Retrieved March 27, 2021, from https://www.americanprogress.org/issues/lgbtq-rights/reports/2020/10/06/... 18 The Center for American Progress, in conjunction with the independent and nonpartisan research group NORC at the University of Chicago, designed one of the most comprehensive surveys to date exploring the lives, attitudes, and experiences of LGBTQ Americans. (n= 1528 LGBT people 18 or older) conducted June 930, 2020 These data are a signal that facing discrimination makes one less likely to seek out necessary services Impact of Anti-Trans Discrimination on Access to Care 25% experienced a problem with insurance related to being trans 25% of trans people who sought coverage for HRT were denied; 55% who sought coverage for gender affirming surgeries were denied 33% reported at least one negative experience related to being trans 23% did not see a doctor when they needed to because of fear of being mistreated James, S.E., Herman, J.L., Rankin, S., Keisling, M, Mottet, L., & Anafi, M. (2016). The Report of the 2015 U.S. Transgender Survey. Washington D.C.: National Center for Transgender Equality 19 The Effects of Discrimination on LGBT Health Anti-LGBT discrimination increases the risks of poor mental and physical health for LGBT people, including depression, anxiety, suicidality, PTSD, substance use and cardiovascular disease Discrimination is linked to health harms even for those who are not directly exposed to it, because the presence of discrimination, stigma and prejudice creates a hostile social climate that taxes individuals' coping resources and contributes to minority stress December 19, 2. (2019, December 19). Discrimination impacts health of LGBT people, analysis finds. Retrieved March 27, 2021, from https://news.cornell.edu/stories/2019/12/discrimination-impacts-health-l... 20 LGBT Health Disparities Greater risk of: Suicide-related behaviors Mood disorders Eating disorders Substance use (alcohol, tobacco, other drugs) Grant, Jaime M., Lisa A. Mottet, Justin Tanis, Jack Harrison, Jody L. Herman, and Mara Keisling. Injustice at Every Turn: A Report of the National Transgender Discrimination Survey.Washington: National Center for Transgender Equality and National Gay and Lesbian Task Force, 2011. Lesbian/bisexual women have higher rates of breast/cervical cancer; trans men and women at greater risk Gay/bisexual men and trans women more likely to have HIV Dibble, S.L., Roberts, S.A., and Nussey, B. (2004) Comparing breast cancer risk between lesbians and their heterosexual sisters. Women's Health Issues March-April 2004 Volume 14(2)60-68 Less likely to have insurance Less likely to fill prescriptions More likely to be refused care Grant, Jaime M., Lisa A. Mottet, Justin Tanis, Jack Harrison, Jody L. Herman, and Mara Keisling. Injustice at Every Turn: A Report of the National Transgender Discrimination Survey.Washington: National Center for Transgender Equality and National Gay and Lesbian Task Force, 2011. 21 2015 Trans Survey 40% of trans people have attempted suicide in their lifetime Six major disparities affecting LGBT people Higher rates of sexually transmitted infections More substance use and abuse Higher rates of mental health conditions Higher odds of obesity and eating disorders Higher rates of breast and cervical cancers Greater risk of heart diseases (Claire Gillespie June 12, & Gillespie, C. (2020, June 12). 6 major health Disparities affecting The LGBTQ+ Community. Retrieved March 27, 2021, from https://www.health.com/mind-body/lgbtq-health-disparities) HIV-related Stigma HIV-related stigma is negative attitudes and beliefs about people with HIV. It is the prejudice that comes with labeling an individual as part of a group that is believed to be socially unacceptable Facts about HIV stigma. (2020, October 22). Retrieved March 27, 2021, from https://www.cdc.gov/hiv/basics/hiv-stigma/index.html 22 Examples: Believing that only certain groups of people can get HIV Making moral judgments about people who take steps to prevent HIV transmission Feeling that people deserve to get HIV because of their choices HIV-relates stigma: Discourages testing and prevention practices Creates confusion about the routes and relative risks of HIV transmission Tied to and compounded by stigma and discrimination associated with sex, race and ethnicity, immigration status, poverty, sexual orientation, gender identity, and gender expression Stigma. (n.d.). Retrieved March 27, 2021, from https://www.hivlawandpolicy.org/issues/stigma Affects on PLWH Can lead to the concealment of one's HIV status for fear of being shunned or stigmatized by others Fear of disclosure can prevent accessing care and treatment for HIV Patients may be unwilling to take medications where they can be seen by others Concealment of HIV status leads to social isolation and internalized feelings of self-loathing Audet CM, McGowan CC, Wallston KA, Kipp AM. Relationship between HIV stigma and self-isolation among people with HIV in Tennessee. PLoS One. 2013 Aug 8; 8(8):e69564. Reece M, Tanner AE, Karpiak S, Coffey K.. The Impact of HIV-related Stigma on HIV care and prevention providers. J HIV AIDS Soc Serv. 2007; 6(3): 55-73. HIV Discrimination = Treating PWH Differently than People w/o HIV Workplace Travel Housing Relationships Healthcare 23 Workplace: not getting hired or not applying for a job because of your HIV status; or fearful of disclosing HIV status to co-workers Travel: certain countries do not allow PLWH to enter Housing: being denied housing or not feeling welcome in a neighborhood because of your HIV status Relationships: domestic or intimate partner violence Health care: denied access, being blamed/shamed for having HIV A health care professional refusing to provide care or services to a person with HIV Providing poor quality of care to PLWH Violating confidentiality Only providing care in settings that further stigmatize PLWH Using infection control procedures (e.g. gloves) with PLWH, rather than all patients Intersectional Stigmas Gender Identity/Sexual Orientation HIV Race/ethnicity 24 Overlapping stigmas are experienced by LGBT PLWH and are exacerbated for BIPOC LGBT PLWH The Effects of Stigma on HIV Prevention HIV stigmais associated with lower uptake ofHIV testingservices, non-disclosure and delayed entry into comprehensive health care, which further leads to higher transmission rates. Among People with HIV (PWH) Negatively effects HIV health outcomes Treatment adherence Engagement/retention in care Social withdrawal & isolation Increased rates of depression Substance use Overall lower quality of life Turan, B., Budhwani, H., Fazeli, P. L., Browning, W. R., Raper, J. L., Mugavero, M. J., & Turan, J. M. (2017). How Does Stigma Affect People with HIV? The Mediating Roles of Internalized and Anticipated HIV Stigma in the Effects of Perceived Community Stigma on Health and Psychosocial Outcomes.AIDS and behavior,21(1), 283291. https://doi.org/10.1007/s10461-016-1451-5 26 HIV Prevention Strategies Testing Lower uptake in HIV testing Non-disclosure Delayed entry into HIV care Higher transmission rates Thapa, S., Hannes, K., Cargo, M.et al.Stigma reduction in relation to HIV test uptake in low- and middle-income countries: a realist review.BMC Public Health18,1277 (2018). https://doi.org/10.1186/s12889-018-6156-4 PrEP Labeling/stereotyping "Truvada whore" Rejection Generational divide Dubov A, Galbo P Jr, Altice FL, Fraenkel L. Stigma and Shame Experiences by MSM Who Take PrEP for HIV Prevention: A Qualitative Study. Am J Mens Health. 2018 Nov;12(6):1843-1854. doi: 10.1177/1557988318797437. Epub 2018 Aug 30. PMID: 30160195; PMCID: PMC6199453. 27 Stigma Reduction Strategies Stigma Reduction Strategies Intrapersonal Level Interpersonal Level Community Level Organizational Level Structural Level 29 Intrapersonal Increasing individual knowledge about HIV transmission, prevention and care Counseling (e.g. CBT) Self-help/support groups Empowerment Access to legal services Interpersonal Care and support Community-based stigma reduction campaigns that reinforce the importance of social support (e.g. We are Family from Greater than AIDS) Community Education, social marketing, mass media that raises the awareness about HIV and its impact on all lives (e.g. CDC's Let's End HIV Together) Organizational Anti HIV stigma training for providers that address Culturally-specific stigma drivers (including personal fears) Prejudice towards vulnerable groups Misconceptions about transmission, prevention, treatment, and universal precautions The effects of stigma on PLWH overall health and well-being PrEP, routine HIV testing, TasP Structural Legal interventions Rights-based approaches Web-based mechanisms for PWH to report HIV-related discrimination in care, employment, education etc Intrapersonal & Interpersonal Strategies Intrapersonal Increasing individual knowledge about HIV transmission, prevention and care Counseling (e.g. CBT) Self-help/support groups Empowerment Access to legal services Interpersonal Care and support Community-based stigma reduction campaigns that reinforce the importance of social support 30 Interpersonal e.g. stigma reduction campaigns such as "We are Family" from Greater than AIDS emphasizes the important role that loved ones can play in supporting the health and well-being of people living with HIV. Materials are available on English and Spanish Community Strategies Education Social marketing Mass media that raises the awareness about HIV and its impact on all lives 31 e.g. CDC's Let's End HIV Together highlights the role that each person plays in stopping HIV stigma and gives voice to people living with HIV, as well as their friends and family. Campaign participants share their stories and call on everyone to work together to stop HIV. Organizational Strategies Anti HIV stigma trainings for providers that address Culturally-specific stigma drivers (including personal fears) Prejudice towards vulnerable groups Misconceptions about transmission, prevention, treatment, and universal precautions The effects of stigma on PLWH overall health and well-being PrEP, routine HIV testing, TasP 32 Structural Strategies Legal interventions Rights-based approaches Web-based mechanisms for PWH to report HIV-related discrimination in care, employment, education etc 33 Questions? 34 April 27th 12:00-1:00 HIV and Stigma: Addressing Stigma in Primary Care Practice, Fostering an Inclusive Clinic Environment Around HIV Prevention 1. How can providers and staff make themselves more approachable to their patient to talk about HIV and PrEP? 2. What kinds of things might a trans person go through when they begin to acknowledge their true gender identity? 3. What are some other activities that can be done to further my lifelong learning and self-examination of my values? 4. Do you have any other suggestions for additional trainings providers and their team should take to talk to their HIV patients? Thank you! 35