Cancer Care & the LGBT Community The Same, Only Scarier: Cancer Care & the LGBT Community

Does it Matter? This is where I usually start my presentations. With a question about health.. Is a tumor a tumor a tumor or does it matter who the tumor spent Valentine’s Day with? or

Does it Matter? What if it’s an ovarian tumor and it is in a trans man? Does it matter now? To whom, besides the patient? or

Why Don’t We Know Them? …and we rarely ask. Most forms don’t permit disclosure, you can’t tell by looking …and we rarely ask.

LGBT Cancer Patients Disclosed How LGBT Cancer Patients Disclosed “If you were out to your health team, how did that happen?” The form gave me the opportunity to specify my sexual orientation/gender identity The provider asked me a direct question about my sexual orientation/gender identity/my relationship I brought up the subject myself, including as a way to correct a mistaken (heterosexual) assumption made by the provider or healthcare worker Someone else told the health care provider about my sexual orientation/gender identity 19% 17% 58% 3%

----------------------------------------------- Sexual Orientation ----------------------------------------------- Gender Identity

Sexual Orientation GAY, or BISEXUAL LESBIAN, or BISEXUAL HETERO- or BISEXUAL

Sexual Orientation LESBIAN an identity label for women who have primary sexual, romantic and relational ties to other women. GAY an identity label for men who have primary sexual, romantic and relational ties to other men. BISEXUAL an identity label for people who are attracted to people of the same gender and different genders.

The subjective experience of one’s own gender Gender Identity The subjective experience of one’s own gender

Constructs of Gender Identity Uninformed View Gender identity begins here Gender identity begins here Patient-centered Construct

Available for free download www.bathroom.support

Disparities across the continuum Risk Screening Diagnosis Treatment Survivorship Let’s do a bit of background now on LGBT health dispariites. This is the the typical cancer continuum, each phase marked by different issues and usually addressed by different providers. The mammogram technician and the radiologist pass the person with the suspicious breast lump off to the surgeon and then the oncologist. Social workers and/or palliative care providers may be involved too. But this Let’s start with the traditional way of looking at cancer. As a continuum, with distinct phases. Most healthcare professionals focus their practice and research one of these phases. “Patients” are passed on to the next team and “patient navigators” are often needed to help make these transitions smooth.   Looked at like this, we know that LGBT people experience disparities at every point on the continuum. But, our experience (and research) shows that the issues that are faced by LGBT people in the healthcare system are NOT best described as a an arrow, a straight line with discrete steps. Disparities across the continuum

Risk Survivorship Diagnosis Treatment Screening To better understand the experience of LGBT people (from risk to survivorship), we would do better to pull the arrow around until it formed a circle. The issues faced by this population are not discrete, but repeat themselves in each phase. The key issues of invisibility, lack of data, discrimination, etc, are not limited to one stage or phase. To give another example, we talk about “coming out” to one’s provider. This is a risk for patients who may feel that their very survival depends on the provider’s good will toward them. The coming out decision and dance (is the patient asked? Does she offer it up?) is repeated over and over again, across this continuum and over time. Probably dozens and dozens of times, if we include support staff like social workers, phlebotomists, MRI technicians, etc. Indulge us one more minute and let’s transform this circle into a new shape… one that offers a good metaphor for cancer in this community. Let’s fill out the circle.

Discrimination Barriers to Care Uneducated Providers This is where disease lives, the intersection of these three issues. Let’s take them one at a time. Try to remember these because I will take us seemingly far the circles but I will always return. First, I want to talk about discrimination, then barriers to care and finally I’ll give you a bit of info about how little most providers understand about LGBT lives and bodies. This order is important. Let’s look at the next slide

Discrimination This is where disease lives, the intersection of these three issues. Let’s take them one at a time. Try to remember these because I will take us seemingly far the circles but I will always return. First, I want to talk about discrimination, then barriers to care and finally I’ll give you a bit of info about how little most providers understand about LGBT lives and bodies. This order is important. Let’s look at the next slide

Hate Crimes Per 1 Million Adults http://www.nytimes.com/interactive/2016/06/16/us/hate-crimes-against-lgbt.html?em_pos=large&emc=edit_nn_20160617&nl=morning-briefing&nlid=22932996&_r=0 Sources: Federal Bureau of Investigation; socialexplorer.com; Census Bureau; Pew Research Center; Williams Institute Let’s start with discrimination…. Yes, there is discrim, even after marriage equality (in 2005, Jews were the most targeted group and LGBT were second. And, while the total hate crimes are fewer, we are more targeted.) Even before the shooting rampage at a gay nightclub in Orlando, Fla., lesbian, gay, bisexual and transgender people were already the most likely targets of hate crimes in America, according to an analysis of data collected by the Federal Bureau of Investigation. L.G.B.T. people are twice as likely to be targeted as African-Americans, and the rate of hate crimes against them has surpassed that of crimes against Jews. Nearly a fifth of the 5,462 so-called single-bias hate crimes were because of the victim’s sexual orientation or PERCEIVED sexual orientation.

We Are Not Equally Vulnerable http://www.nytimes.com/interactive/2016/06/16/us/hate-crimes-against-lgbt.html?em_pos=large&emc=edit_nn_20160617&nl=morning-briefing&nlid=22932996&_r=0 The LGBT community is diverse and discrimination is not distributed equally. We also have multiple intersecting identities. Here you can see that Trans women of color are at the greatest risk of being murdered. A report by the Human Rights Campaign found yhat more transgender people were killed in 2015 than during any other year on record.

70% of transgender and gender nonconforming people have experienced some form of harassment in public restrooms Herman, J. L. (2013). Gendered restrooms and minority stress: The public regulation of gender and its impact on transgender people's lives. Journal of Public Management & Social Policy, 19(1), 65.

Discrimination Health LGB respondents in states without protective policies were 5X more likely than those in other states to have 2 or more mental disorders. LGB people who had experienced “prejudice-related major life events” were 3x more likely to have suffered a serious physical health problem over the next year, regardless of age, gender, employment and even health history. LGB people who live in communities with high levels of anti-gay prejudice die 12 years earlier than their peers in other communities. Discrimination is not just unpleasant or unfair. It has real and serious health consequences. It compromises our immune system and raises our cortisol levels. You can read these yourself, but each shows that discrimination leads VERY CLEARLY AND DIRECTLY to health problems… m. h. problems, serious physical health problems and tobacco use. These held true regardless of age, race, and health histories. This last one is unbelievable. But true. The impact of hate crimes ripples across communities. When a specific group is targeted, researchers have found that the entire group has trauma responses similar to the actual victim. And that is the purpose of targeting a hate crime in the first place. It says Do Not Forget That None of You are Safe.

Individual Risk Behaviors Tobacco Drugs HIV Alcohol Discrimination results in a number of individual behaviors that impact the health of LGBTQ people, such as drug and alcohol use, sexual health, obesity, etc. Recent studies have shown that bullying (due to sexual orientation or gender nonconformity) directly leads to tobacco use, the biggest preventable cause of cancer. Discrimination increases cancer risks. In fact, lesbians are considered to have the greatest cluster of risk factors of any population (tobacco use, alcohol, high BMI and nulliparity). For gay and bisexual men, we see that HIV, HPV and tobacco use dramatically increase the risk for anal cancer, a growing epidemic among this population. Most of the individual behaviors that increase the risk for disease begin in childhood. So before I address some of these in more detail, let’s look at some of the profound differences in the concerns of queer vs. straight youth. STI Obesity / Eating disorders

Barriers to Care

Insurance Coverage Despite huge gains in coverage since the Affordable Care Act went into effect… LGBT people are 2x as likely to be uninsured than their non-LGBT peers. are less likely to have a regular health care provider. 9. Gates, G.J., In US, LGBT more likely than non-LGBT to be uninsured. 2014. 10. Ward, B.W., et al., Sexual orientation and health among US adults: National Health Interview Survey, 2013. 2014. Baker, K., L.E. Durso, and A. Cray Moving the Needle: The Impact of the Affordable Care Act on LGBT Communities. 2014.

75% of lesbians report delaying/avoiding healthcare Harris Interactive survey in conjunction with Mautner Project, The National Lesbian Health Organization, January 2005

Uneducated Providers

Lack of Provider Knowledge about LGBT Health Average number of hours dedicated to LGBT health in an entire medical school education: 5 Average number of hours dedicated to LGBT health in nursing school: 2 50% of transgender people had to teach their medical providers about transgender care This is the third circle in the social determinants of LGBT health. . Without explicit teaching about LGBT health, physicians and medical students will reflect the same homophobia and heterosexism as the broader society The first statistic is from a 2011 survey of medical school Stat about trans people teaching their providers from National Transgender Discrimination Survey Report on Health and Health Care October 2010 Obedin-Maliver, J., Goldsmith, E. S., Stewart, L., White, W., Tran, E., Brenman, S., ... & Lunn, M. R. (2011). Lesbian, gay, bisexual, and transgender–related content in undergraduate medical education. JAMA, 306(9), 971-977. Lim, F., M. Johnson, and M. Eliason, A National Survey of Faculty Knowledge, Experience, and Readiness for Teaching Lesbian, Gay, Bisexual, and Transgender Health in Baccalaureate Nursing Programs. Nursing Education Perspectives, 2015. 36(3): p. 144-152. Carabez, R., et al., “Never in All My Years…”: Nurses' Education About LGBT Health. Journal of Professional Nursing, 2015. 31(4): p. 323-329. Michele J. Eliason PhD , Suzanne L. Dibble DNSc RN & Patricia A. Robertson MD (2011) Lesbian, Gay, Bisexual, and Transgender (LGBT) Physicians' Experiences in the Workplace, Journal of Homosexuality, 58:10, 1355-1371, DOI: 10.1080/00918369.2011.614902

Nearly 50% expressed explicit bias (2016). 80% of 1st year medical students expressed implicit bias against lesbian/gay people. Nearly 50% expressed explicit bias (2016). Medical provider discrimination is still alive and functioning. This is a very new study. It may also explain why LG med students have 50% higher risk of depression, anxiety and lower health than others. Just in case you thought times were changing, think again. An implicit bias is a positive or negative mental attitude towards a person, thing, or group that a person holds at an unconscious level. In contrast, an explicit bias is an attitude that somebody is consciously aware of having. Sabin, J.A., R.G. Riskind, and B.A. Nosek, Health Care Providers' Implicit and Explicit Attitudes Toward Lesbian Women and Gay Men. Am J Public Health, 2015. 105(9): p. 1831-41. Heterosexual nurses held strong implicit preferences for heterosexual people over gay and lesbian people (2015)

Screening rates Cancer risks

More Cancer, Less Research INCIDENCE 14% lesbians and 17.6% of bisexual women have reported ever having had cancer (vs. 11.9% heterosexual women) Bisexual women have the highest rate of breast cancer at 8.4%. Lesbians have higher 5-year and lifetime risk for developing breast cancer. Gay men are 44x more likely to diagnosed with anal cancer than men in the general population. If funding and research on LGBT populations and cancer continue at this pace, then we are decades away from understanding and eventually alleviating the cancer burden among LGBT populations. 9. Alexander R, Parker K, Schwetz T: Sexual and gender minority health research at the National Institutes of Health. LGBT Health 2016;3:7–10. Valanis BG, et al. Sexual orientation and health: comparisons in the women's health initiative sample. Arch Fam Med. 2000 Sep-Oct; 9(9):843-53. Kerr DL, Ding K, Thompson AJ. A comparison of lesbian, bisexual, and heterosexual female college undergraduate students on selected reproductive healt   12. National Institutes of Health Sexual and Gender Minority Research Coordinating Committee. NIH FY 2016–2020 Strategic Plan to Advance Research on the Health andWell-being of Sexual and Gender Minorities. National Institutes of Health, 2015. Available at: http://edi.nih.gov/sites/default/ files/EDI_Public_files/sgm-strategic-plan.pdf. Accessed November 15, 2015 RESEARCH Only 1.8 % of NIH funded Sexual and Gender Minority research focused on cancer (vs. 75% focused on HIV/AIDS) NIH

The LGBT Cancer Experience Lesbian and bisexual women cancer survivors had 2.0 and 2.3x the odds of reporting fair or poor health compared with heterosexual female cancer survivors. Gay, bisexual and transgender men had more psychological distress after surviving cancer than their straight peers. Compared with norms, gay men with prostate cancer reported significantly worse functioning and more severe bother scores on urinary, bowel, hormonal symptom scales, worse mental health functioning and greater fear of cancer recurrence. LGBT cancer survivors had lower satisfaction with care than did heterosexual cancer survivors, even controlling for demographic and clinical variables associated with care. Boehmer, U., Miao, X. and Ozonoff, A. (2011), Cancer survivorship and sexual orientation. Cancer, 117: 3796–3804. doi: 10.1002/cncr.25950 Psychooncology. 2015 Nov;24(11):1384-91. doi: 10.1002/pon.3746. Epub 2015 Jan 28. Disparities in psychological distress impacting lesbian, gay, bisexual and transgender cancer survivors. Kamen C1, Mustian KM1, Dozier A2, Bowen DJ3, Li Y2. J Sex Med. 2014 Sep;11(9):2308-17. doi: 10.1111/jsm.12598. Epub 2014 May 30. Changes in sexual roles and quality of life for gay men after prostate cancer: challenges for sexual health providers. Hart TL1, Coon DW, Kowalkowski MA, Zhang K, Hersom JI, Goltz HH, Wittmann DA, Latini DM. Jabson, J., & Kamen, C. S. (2015). Sexual Minority Cancer Survivors' Satisfaction with Care. Journal of psychosocial oncology, (just-accepted), 00-00.

We start out wary From all past experiences with the healthcare system. After many years of avoiding engagement, LGBT people are thrust into the system after a diagnosis, whether they are ready or not. See, how the discrimination that may have led to the increased risks, like thru smoking, is still in play or feared after diagnosis. That’s why the continuum model is not an ideal metaphor.

Disclosure is related to safety (over & over & over again) Katz (2009) found that gay and lesbian patients have considerable difficulty disclosing their sexual identity to cancer care providers. Katz, A. (2009). Gay and lesbian patients with cancer. Oncology Nurs- ing Forum, 36, 203–207. doi:10.1188/09.ONF.203-207 Noncancer studies indicated that older LGBT patients in particular have difficulty disclosing their identity to medical providers (Brotman, Ryan, & Cormier, 2003) and that lack of disclosure results in poorer health outcomes for LGBT patients of all ages (Durso & Meyer, 2013) Disclosure is related to safety (over & over & over again)

gendered treatment often alienates us Most of us tend to think of medical tx as straightforward, not gender based, but it is grounded in gender assumptions. This is particularly alienating for trans and gender nonconforming people. Breast cancer is a perfect example, even as we know that men get it and transgender men do too. The pinking of breast cancer support, the emphasis on Look Good/Feel Good campaigns are grounded in stereotypical understandings of femaleness and femininity, and an assumption that all patients are female and all want to look “pretty”.. gendered treatment often alienates us

Think of it. Where does treatment for breast and GYN cancers take place? If the facility is marketed as a women’s cancer center and these are understood as “women’s cancers”, it is particularly unwelcoming to trans and GNC people with those cancers. Alienating, in fact. When the trans guy walks in with his girlfriend, the staff assume she is the patient.

Lesbians Rejecting Reconstruction The Flattoppers Lesbians Rejecting Reconstruction rejecting being defined by their body image perceiving their social context as supportive of nonreconstruction feeling pressured by social norms to undergo reconstructive surgery LGBT Health Volume 3, Number 1, 2016 ª Mary Ann Liebert, Inc. DOI: 10.1089/lgbt.2015.0091   Rejection of Breast Reconstruction Among Lesbian Breast Cancer Patients Rachael L. Wandrey, MS, Whitney D. Qualls, BA, and Katie E. Mosack, PhD We conducted an inductive thematic analysis of breast reconstruction discussions among individuals who posted to a lesbian-specific online support forum found on breastcancer.org , the largest online support venue for BC survivors. Two hundred fifty-five users posted to the lesbian-specific forum; 53 of these users discussed breast reconstruction and were included in the present analysis. We analyzed a total of 168 posts. RESULTS: Our analysis revealed five important themes related to breast reconstruction attitudes as follows: (1) rejecting being defined by their body image, (2) privileging sensation over appearance, (3) believing that being breastless is protective, (4) perceiving their social context as supportive of nonreconstruction, and (5) feeling pressured by social norms to undergo reconstructive surgery. CONCLUSIONS: Among postings in the lesbian-specific online support forum, attitudes related to the rejection of breast reconstruction were pervasive. Provider communication should be evaluated for heterosexist biases, such as the implication that breast reconstruction should be a part of a normal course of treatment. In addition, providers must acknowledge that breast reconstruction is value laden and the range of viable treatment and construction options, including the decision not to reconstruct, should be presented in a nonbiased neutral way.

Our support teams Having a partner present during delivery of the cancer diagnosis was also associated with better current self-reported health. This finding underscores the importance of including same-sex partners in the cancer care process because associations between this inclusion and self-rated health may be seen years postdiagnosis In the decision tree analysis, support from parents at the time of diagnosis emerged as the strongest single factor associated with current good or better health Charles S. Kamen, PhD, MPH, Marilyn Smith-Stoner, PhD, MSN, Charles E. Heckler, PhD, MS, Marie Flannery, RN, PhD, AOCN®, and Liz Margolies, LCSW . Social Support, Self-Rated Health, and Lesbian, Gay, Bisexual, and Transgender Identity Disclosure to Cancer Care Providers. Vol. 42, No. 1, January 2015 • Oncology Nursing Forum LGBT patients may also rely on unique social networks that incorporate friends, ex-partners, and families of choice (Grossman, Daugelli, & Hershberger, 2000). Grossman, A.H., Daugelli, A.R., & Hershberger, S.L. (2000). Social support networks of lesbian, gay, and bisexual adults 60 years of age and older. Journals of Gerontology, Series B, Psychology and Social Sciences, 55, P171–P179.

Tell us what WE need to know

Prostate Cancer and Gay Men: Some unique challenges loss of the prostate as a site for sexual pleasure in receptive anal sex loss of ejaculate (more central in gay sex) persistent rectal irritation or pain sufficient to prevent receptive anal sex Erections too weak for insertive anal sex (Anal penetration requires 33% more rigidity than vaginal penetration) Having a partner present during delivery of the cancer diagnosis was also associated with better current self-reported health. This finding underscores the importance of including same-sex partners in the cancer care process because associations between this inclusion and self-rated health may be seen years postdiagnosis In the decision tree analysis, support from parents at the time of diagnosis emerged as the strongest single factor associated with current good or better health Charles S. Kamen, PhD, MPH, Marilyn Smith-Stoner, PhD, MSN, Charles E. Heckler, PhD, MS, Marie Flannery, RN, PhD, AOCN®, and Liz Margolies, LCSW . Social Support, Self-Rated Health, and Lesbian, Gay, Bisexual, and Transgender Identity Disclosure to Cancer Care Providers. Vol. 42, No. 1, January 2015 • Oncology Nursing Forum LGBT patients may also rely on unique social networks that incorporate friends, ex-partners, and families of choice (Grossman, Daugelli, & Hershberger, 2000). Grossman, A.H., Daugelli, A.R., & Hershberger, S.L. (2000). Social support networks of lesbian, gay, and bisexual adults 60 years of age and older. Journals of Gerontology, Series B, Psychology and Social Sciences, 55, P171–P179.

The Pervasive Expectation of Gender Conformity Can Be Alienating

liz@cancer-network.org ASK ME! www.lgbtcultcomp.org