Meeting the Healthcare Needs of Lesbian, Gay, Bisexual, and Transgender (LGBT) Populations: Ending LGBT Invisibility Harvey Makadon, MD Developed by The Fenway Institute, Fenway Community Health Boston, MA in collaboration with the American Medical Association GLBT Advisory Committee 2010 With Funding From Aetna and the Gilead Foundation LGBT Invisibility in Healthcare When you last saw a clinician for primary care, how many of you were asked to discuss your sexual history? sexual health? Has a clinician ever asked you about your sexual orientation? Has a clinician ever asked if you have concerns about your gender identity? How many have had discussions about LGBT health issues in school or in training? How about at CME programs? How many feel the centers where you work actively create a welcoming environment for LGBT staff and patients? © The Fenway Institute, 2009 Why LGBT Health? Two Worlds © The Fenway Institute, 2009 Growing LGBT Acceptance © The Fenway Institute, 2009 A Very Different Brady Bunch © The Fenway Institute, 2009 Tyler Clementi: Suicide Following Public Humiliation, Invasion of Privacy © The Fenway Institute, 2009 Tyler is not alone: Asher Brown Billy Lucas Seth Walsh © The Fenway Institute, 2009 Gang Harassment of Gay Youth in the Bronx © The Fenway Institute, 2009 Public Discrimination and Inequality: “I just think my children and your children would be much better off and much more successful getting married and raising a family, and I don’t want them brainwashed into thinking that homosexuality is an equally valid and successful option — it isn’t,” : “I didn’t march in …the gay pride parade this year. My opponent did, and that’s not the example we should be showing our children.” © The Fenway Institute, 2009 What Message? © The Fenway Institute, 2009 Stigma and Health The publication of Erving Goffman's Stigma: Notes on the Management of Spoiled Identity in 1963 generated a profusion of research on the nature, sources, and consequences of stigma Stigma …has… a dramatic and probably under-recognized effect on the distribution of life chances such as employment opportunities, housing, and access to medical care The extent to which a stigmatized person is denied the good things in life and suffers more of the bad things has been posited as a source of chronic stress, with consequent negative effects on mental and physical health. Link and Phelan, Stigma and Its Public Health Implications, Lancet, Volume 367, 11 February 2006-17 February 2006, Pages 528-529 © The Fenway Institute, 2009 The Community Responds © The Fenway Institute, 2009 What Can We Do? Dr. Elise D. Berlan of Nationwide Children’s Hospital in Columbus, Ohio, and her colleagues recently found that in a study of more than 7,500 adolescents, gay males were twice as likely to report being bullied and mostly heterosexual males were almost 1.5 times as likely to report being bullied, as compared to straight males (J. Adolescent Health 2010; 46: 366-71). Their findings among LGBTQ young women were similar. Dr. Berlan and colleagues advised doctors who are taking care of gay and bisexual youth to ask about teens’ experiences with violence and bullying, probe how they were doing with those experiences, and try to determine if there is anything that could be done to support them © The Fenway Institute, 2009 A Long History of Bias in Healthcare Survey of California physicians (1982 and 1999): 1982: 39% were sometimes or often uncomfortable providing care to gay patients (Mathews et al., 1986) 1999: 18.7% were sometimes or often uncomfortable providing care to gay patients (Smith and Mathews, 2007) National survey 2007 of general public: 30.4% would change providers upon finding out their provider was gay/lesbian (Lee et al., 2008) 35% would change practices if found out that gay/lesbian providers worked there 2005/6 surveys of medical students (AAMC reporter, 2007) 15% aware of the mistreatment of LGBT students at their schools 17% of LGBT students reported hostile environments © The Fenway Institute, 2009 Proportion of Physicians Discussing Topics with HIV Infected Patients -Adherence to Therapy 84% -Condom Use 16% -HIV Transmission or Risk Reduction 14% © The Fenway Institute, 2009 Discomfort as a Barrier “Ironically, it may require greater intimacy to discuss sex than to engage in it.” The Hidden Epidemic Institute of Medicine, 1997 © The Fenway Institute, 2009 LGBT Demographics, Concepts, and Terminology © The Fenway Institute, 2009 L,G,B and T Demographics, Concepts, and Terminology © The Fenway Institute, 2009 “No, we are not twins.” © The Fenway Institute, 2009 Same-Sex Couples in the United States LGB Demographics in the U.S. Identify as lesbian, gay or bisexual: Same-Sex Households 1.4 – 4.1% Same-sex sexual contact in last year: 3% (women) 4% (men) Same-sex sexual contact ever: 4.3 -11.2% (women) 6 - 9.1% (men) (Laumann et al.,1994; Mosher et al., 2005) (Makadon, 2006); Map Courtesy of Makadon, H. J. N Engl J Med 2006;354:895-897J. Bradford PhD. and K. Barrett PhD., SERL, VCU © The Fenway Institute, 2009 There is diversity of expression in our own communities and globally © The Fenway Institute, 2009 Understanding Sexual Orientation Identity Attraction ©22The Fenway Institute, 2009 Behavior Discordance between Sexual Behavior and Self -Reported Identity 2006 study by the NY Department of Mental Health sample of 4193 men in NYC 9.4% of men who identified as straight had sex with a man in the prior year More likely to • belong to minority racial and ethnic groups, • be of lower socio-economic status, • be foreign born Less likely to have used a condom (Pathela, 2006) 77-91% of lesbians have had at least one prior sexual experience with men 8% in the prior year (O’Hanlan, 1997) © The Fenway Institute, 2009 Transgender: The T in LGBT People who persistently identify and/or express their gender as the opposite of their biologic birth sex and often have hormonal and surgical treatment (sometimes called transsexualism) People who define themselves as a gender outside the either/or construct of male/female – e.g., having no gender, being androgynous, or having elements of multiple genders (some use the term genderqueer) People who enjoy the outward manifestations of various gender roles and cross dress to varying extents (some use the term crossdressers) ©24The Fenway Institute, 2009 Alternative Constructs of Gender Identity: Terminology Follows Concept Identity Begins Here Identity Begins Here Individual Construct Gender Affirmation © The Fenway Institute, 2009 Medical Construct Gender Reassignment or Transitioning Getting to Know Your Patients © The Fenway Institute, 2009 How well do you know your patients? New Patient New Lesbian Patient How do you feel when learning this? © The Fenway Institute, 2009 Taking a History The core comprehensive history for LGBT patients is the same as for all patients (keeping in mind unique health risks and issues of LGBT populations) Get to know your patient as a person (e.g., partners, spouses, children, jobs) Avoid judgment or bias Assure confidentiality – and ask permission to include sexual orientation and gender identity on medical chart The Joint Commission Roadmap/ Meaningful Use Non Discrimination Recording Identity © The Fenway Institute, 2009 Communicating with Patients Mirror the patients’ language: how do they identify their sexual orientation and partners? Their gender? Use gender neutral terms and pronouns when referring to partners, unless you are sure “Do you have a partner or spouse? Are you currently in a relationship? What do you call your partner?” Use the pronoun that matches the person’s gender identity If you slip up, apologize and ask the patient what term is preferred © The Fenway Institute, 2009 Learning about Identity, Behavior, and Desire through the Sexual History Explain to patients that the sexual history is routine and confidential: “I am going to ask you some questions about your sexual health that I ask all my patients. The answers to these questions are important for me to know to help keep you healthy. Like the rest of this visit, this information is strictly confidential.” Ask about sexual health as well as behavior (e.g., satisfaction with sexual function) Assess comfort with sexuality “Do you have any concerns or questions about your sexuality, sexual identity, or sexual desires?” © The Fenway Institute, 2009 The Sexual History, cont’d Assess sexual behavior “Have you been sexually involved with anyone during the past year, including oral, vaginal, anal sex, or other kinds of sexual practices?” “Are you sexually involved with women, men, or both?” (CCAC, 2001) “How many sexual partners have you had in the past twelve months?” Assess risk for HIV and STIs “How do you protect yourself from HIV and other STIs? (pregnancy)?” If use condoms or latex dams: “How often do you use condoms or latex dams when you have sex: all the time, most of the time, once in a while?” If barrier use is not consistent, ask: “When and with whom do you not use condoms or latex dams?” “Do you use alcohol or drugs when you have sex?” “Does your partner(s)?” ©31The Fenway Institute, 2009 Gender Identity Ask all patients about gender identity concerns – make it routine: “Because so many people are impacted by gender issues, I have begun to ask everyone if they have any concerns about their gender. Anything you do say about gender issues will be kept confidential. If this topic isn’t relevant to you, tell me and I’ll move on.” (Feldman and Goldberg, 2006) Or ask: “Out of respect for my clients’ right to self-identify, I ask all clients what gender pronoun they’d prefer I use for them. What pronoun would you like me to use for you?” (Feldman and Goldberg, 2006) © The Fenway Institute, 2009 Understanding Desire: Support for “Coming Out” Can happen at any age regarding sexual orientation or gender identity Ask patients who are coming out if they have family and community supports Resources: Youthresource.com PFLAG.org HRC.org © The Fenway Institute, 2009 The Core of the Cross-cultural Interview Respect Curiosity Empathy Adapted from Betancourt and Green © The Fenway Institute, 2009 Health Disparities and Specific Concerns in LGBT Populations © The Fenway Institute, 2009 Background: Disparities in LGBT Health Research so far: Growing but limited number of studies; methodological issues Institute of Medicine Report on Lesbian Health conclusions (1999): Enough evidence to support more research; develop better methods of conducting that research Healthy People 2010 goal: Eliminate health disparities that occur due to differences in sexual orientation Future research on range of LGBT health issues: The Population Center at The Fenway Institute Other institutions across the nation The Institute of Medicine: Committee on LGBT Health Status and Research Gaps and Opportunities © The Fenway Institute, 2009 LGB Mental Health Concerns As compared to self-identified heterosexuals (Cochran et al 2003): Gay and bisexual men have higher prevalence of: Depression Panic attacks Suicidal ideation Psychological distress Body image/eating disorders (Siever, 1994; Kaminski Lesbian and bisexual women have higher prevalence of: Generalized anxiety disorder Depression Antidepressant use Psychological distress et al, 2005) Screen for disorders; assess comfort with sexual identity; social supports © The Fenway Institute, 2009 LGB Youth (12-24 years) Primary Health Concerns: Smoking Homelessness Suicide attempts Risk of being bullied, threatened, sexually coerced Lack of family support Higher levels of parental rejection associated with higher rates of attempted suicide, drug use, depression, and unprotected sex (Ryan, et al, 2009) For tips, see the Family Acceptance Project website: http://familyproject.sfsu.edu/. © The Fenway Institute, 2009 Lesbian and Bisexual Women: Health Concerns Smoking Alcohol abuse Obesity / Excess weight Mental health Cardiovascular disease Cancer prevention Cervical; Breast STI’s: HPV, HSV 1, BV, Trichomonas, ? HIV Personal safety hate crimes, sexual and domestic violence Screen according to current guidelines © The Fenway Institute, 2009 Gay and Bisexual Men: Health Concerns Smoking Recreational drug use (alcohol abuse?) marijuana, inhalants, ketamine, GHB and cocaine Crystal methamphetamine: growing use and concern Use in conjunction with sex raises risk of HIV/STIs Sexually transmitted infections (STIs) and viral hepatitis Anal cancer Mental health Personal safety hate crimes, sexual and domestic violence Screen according to current guidelines © The Fenway Institute, 2009 Transgender Standards of Care Mental health evaluation Hormone therapy Age at start?; level of feminine/masculine?; side effects Self Treatment Surgery for gender affirmation WPATH: Standards of Care www.wpath.org Vancouver Coastal Health (UBC) http://www.celebratevgh.ca/transhealth/ Endocrine Society http://www.endo-society.org/guidelines © The Fenway Institute, 2009 © The Fenway Institute, 2009 Life Cycle: Family Matters! Marriage / Commitment Reproduction Parenting Legal Issues © The Fenway Institute, 2009 Life Cycle: “Aging and Gay, and Facing Prejudice in Twilight” Isolation and fewer family or community supports Less likely to be “out” than younger LGBT Discrimination in long-term care facilities Need for advance directives – death of partner can bring great strain and confusion © The Fenway Institute, 2009 Jane Gross, The New York Times, October 9, 2007 Creating Change at Home: Better Environments for Caring, Learning, and Working © The Fenway Institute, 2009 Assessing the Current Environment Do you know if LGBT patients feel welcome and feel safe to disclose their sexual behavior and identity? Do you know if LGBT students, trainees, faculty, and staff feel safe and accepted? Does everyone feel comfortable being themselves? Can everyone talk freely with colleagues? Are students and professionals being taught about LGBT health needs? © The Fenway Institute, 2009 © The Fenway Institute, 2009 The Patient Environment The Joint Commission-2010 Create intake forms that include the full range of sexual and gender identity and expression Ensure confidentiality on forms Train all staff to be respectful of LGBT clients, and to use clients’ preferred names and pronouns Post non-discrimination policy inclusive of sexual orientation and gender identity Display images that reflect LGBT lives (e.g., posters with same-sex couples, rainbow flags, trans symbol) Provide educational brochures on LGBT health topics Offer unisex bathrooms © The Fenway Institute, 2009 HIV: Metaphor for LGBT Health "This disease will be the end of many of us, but not nearly all. And the dead will be commemorated, and will struggle on with the living, and we are not going away. We wont die secret deaths anymore. The world only spins forward. We will be citizens. The time has come.“ Angels in America, Tony Kushner © The Fenway Institute, 2009 © The Fenway Institute, 2009 Resources AMA GLBT Advisory Committee: www.ama-assn.org Training video on taking a sexual history Sample non-discrimination policy The Fenway Institute: www.lgbthealtheducation.org LGBT Health Learning Modules Links to many other resources for providers and consumers Gay and Lesbian Medical Association: www.glma.org Pamphlet with guidelines for providers on LGBT health The Fenway Guide to Lesbian, Gay, Bisexual, and Transgender Health. American College of Physicians, 2008. (order from Amazon.com or acponline.com) © The Fenway Institute, 2009 Enhancing Healthcare=Enhancing Human Rights © The Fenway Institute, 2009 STI Screening in MSM (CDC) Sexually active MSM should be tested for STIs annually Or every 3-6 months if have multiple or anonymous partners, use illicit drugs in conjunction with sex, or use methamphetamine: HIV (serology) Syphilis (serology) Urethral gonorrhea (culture or NAAT*) and Chlamydia (NAAT) if had insertive intercourse in past year; Rectal gonorrhea and Chlamydia (culture) if had receptive anal intercourse in past year; Pharyngeal gonorrhea (culture) if had receptive oral intercourse in past year *nucleic acid amplification test © The Fenway Institute, 2009 STI Screening in MSM (CDC), cont’d. Vaccinate against hepatitis A and B (unless previous infection or immunization is documented) Consider HSV-2 testing (type-specific serology) if infection status is unknown Anal Pap not yet recommended by CDC (but some experts do recommend it) HPV vaccine in men being evaluated © The Fenway Institute, 2009 Safer Sex Counseling Guidance Behavioral risk /harm reduction approaches: Abstinence Monogamy with uninfected partner Reduce number of partners Low-risk sexual practices Consistent and correct use of barrier methods Cease engaging in one form of high-risk activity Avoid excessive substance use Advise having a proactive plan to protect self and partners Counsel on correct use of barrier protection Educate on availability of post-exposure prophylaxis (PEP) for high-risk HIV exposure (e.g. condom break, post-coital HIV disclosure) © The Fenway Institute, 2009 Anal Cell Carcinoma: Screening No consensus on whether to screen No randomized trials; no formal guidelines except NY State AIDS Institute (www.guideline.gov) Rationale for screening: Rates in MSM similar to CSCC in women before routine Pap Hypothesis that pathogenesis is same as cervical cancer Effective screening modalities Morbidity and mortality related to anal cancer Cost effectiveness (Kreuter and Wieland, 2009; Palefsky, 2009; Goldie et al., 2000; Volberding, 2000) © The Fenway Institute, 2009 Whom and How to Screen Whom to screen? HIV infected men and women (yearly) MSM with high-risk behavior Transplant recipients Women with cervical cancer, high grade lesions Need larger studies for definitive guidance How to screen? Anal Pap Follow Up High Resolution Anoscopy (HRA) Digital Rectal Examination (Ryan et al., 2000; Goldie et al., 2000; Palefsky J et al. 2008, Palefsky 2008; Kreuter and Wieland, 2009) © The Fenway Institute, 2009