Healthcare for Trans and Gender Non-Conforming Individuals

Healthcare for Trans and Gender Non-Conforming Individuals Kristin Keglovitz Baker PA-C, AAHIVS Associate Medical Director Howard Brown Health Center Disclosures: Advisory Board for Gilead

Objectives • 1. Describe specific health care and HIV prevention and treatment needs of transgender people • 2. Outline common terminology in the transgender community • 3. Discuss access to healthcare for transgender people

It’s been a long day, let’s try an exercise to start… • Take off both of your shoes • Then put them back on, but put your right shoe on your left foot and your left shoe on your right foot. • Now…

How Does It Feel? • Some transgender or gender non-confirming individuals have described that this is similar to how they feel when it comes to their gender identity not fitting their physical body • Can still walk around, jump up and down, but it is definitely not comfortable, something is not right, or doesn’t fit… • Can be helpful to remember as we discuss the definitions for these terms and what types of experiences and discrimination trans people face

Definitions Important to have common language…

Sex (noun) • Not the verb • Sex is always assigned to us at birth (or sometimes well before) • Often used interchangeably with gender but technically sex is describing only physical characteristics • Conventionally, only two options “M or F” for the rest of our lives based on this • Scientifically and medically speaking we know there are babies born with characteristics of both sexes (i.e. intersex or disorders of sexual development)

Gender • The social categories (for us, this includes male or female) that are differentiated by psychosocial characteristics and role expectations • The perceived or projected component of identity • In our society, it is assigned, based on sex • In our society, the assignment means a person likes certain things and acts in a certain way, based on their physical characteristics

We like boxes!

Gender Identity • One’s sense of self as a gendered person (as man, woman, both, neither etc). • Gender identity may or may not match the sex assigned at birth. • Gender identity may or may not conform to conventional expectations of maleness or femaleness From Dr. Anne Enke www.http://www.ourlivesmadison.com/2008/03/01/living-with-gender

Gender Identity is also… • NOT permanent or fixed or “boxable” • NOT something one person can decide for someone else • NOT something to be afraid of when it is different than what we might expect • NOT easy to avoid assigning to others • NOT the same thing as sexual orientation

Gender Expression • The physical manifestation of one's gender identity, usually expressed through clothing, mannerisms, and chosen names. • Chosen pronouns: • they, • his and/or her • ze, hir, herm • no pronoun

Sexual Orientation • Describes who an individual is sexually and physically attracted to • Someone can be transgender and attracted to… • Important for us as healthcare providers to know only what kind of sex someone is having with which body parts, in order to identify risk factors and do appropriate testing and counseling • In order to know this, we have to ask the right questions in a non-judgmental way • Sexual orientation is not based on gender identity or vice versa – each individual is unique

What is Transgender? • An umbrella term for anyone who’s gender identity does not match the sex/gender they were assigned at birth • Often sense this difference at a very young age

Trans • one who reassigns, or identifies differently than, the sex and/or gender they were given at birth • an individual whose gender expression is considered non-traditional for their sex or gender From “Establishing a Common Language to Discuss Transgender People,” Lydia A. Sausa 2009. www.lydiasausa.com

Language • Cross dresser • Drag king/drag queen • Trans masculine • Trans feminine • Intersex • Tranny • Pre-op/ post-op • Transgender • Transsexual • Trans • Gender queer • Gender bender • Gender fluid • Bi-gendered • FTM/MTF • Changer

What is Gender Identity Disorder? • Good question! Many will argue being trans is not a disorder • Defined in DSM IV • Statement to APA on their Work Group decision to not remove GID or any version of gender incongruence (GI) in the new version of DSM: • In summation, we challenge the Work Group to reconsider its revisions to the diagnosis of GID and, instead, withdraw the diagnosis altogether. Based on the defined purpose of the DSM and its definition of a mental disorder, there is no justification for inclusion of GI within the DSM-V. Any continued efforts to include GI are unnecessary, and label and stigmatize an already marginalized population. We challenge the Work Group to remove the diagnosis altogether, and support the destigmatization of GID/GI just as the APA did with the previous diagnosis of homosexuality."

Prevalence • Nobody is really keeping track in US – soon to be published study in Massachusetts estimates 0.5% (Conran et al) based on household phone survey. • Also complicated because data that is published are those presenting for care, and many people do not have access to trans friendly providers or others may not desire to transition • 2007 published Oslayger and Conway estimate of between 1:500 to 1:2000 MTF • 1993 data from Netherlands estimated 1:11,900 MTF and 1:30,400 FTM • But most experts estimate much higher than this • HBHC has almost 900 active transgender patients in primary care, well over 100 more accessing supportive services

HIV Prevalence • Transgender communities in the United States (US) are among the groups at highest risk for HIV infection • In 2009, about 4,100 of 2.6 million HIV testing events were conducted with someone who identified as transgender. Newly identified HIV infection was 2.6% among transgender persons compared with 0.9% for males and 0.3% for females • In New York City, from 2005–2009, there were 206 new diagnoses of HIV infection among transgender people, 95% of which were among transgender women From http://www.cdc.gov/hiv/transgender/

HIV Prevalence cont’d • In one study, 73% of the transgender women who tested HIV-positive were unaware of their status. • Studies also indicate that black transgender women are more likely to become newly infected with HIV From http://www.cdc.gov/hiv/transgender/

Prevention/Treatment Challenges • Identifying transgender people can be challenging • High levels of alcohol and substance abuse • Sex work • Multiple Partners • Domestic Violence • Discrimination and social stigma can hinder access to education, employment, and housing opportunities • Health care provider insensitivity

Barriers to Accessing Quality Health Care Barriers LGBT persons face in health care settings: Structural Personal Financial Cultural • These barriers tend to: • –Alter behavior and attitudes toward health care services, if available • –Can adversely affect health outcomes

A Deadly Equation Provider aversion to conducting appropriate sexual risk screening + • Proider lack of training + • Understandable patient fear of disclosure + • Research showing higher risk behaviors = • A Deadly Combination

Financial Barriers Experience lower socioeconomic status than the general population • Uninsured or underinsured • Many insurance companies and employers do not provider domestic partner benefits to LGBT couples in committed relationships

Financial Barriers • The uninsured have a greater preponderance of certain illnesses-anxiety, suicide ideation, physical or sexual abuse, ulcers, substance abuse, and eating disorders • Uninsured levels are highest among transgender people-47-52%

So What Can We Do? • DEVOTE TIME We expect changes in outcomes but we don’t take the time • In a survey of all US medical schools, an average of 2.5 hours was devoted to LGBT health in a 4-year program • Take time to inform yourself (and staff) about the health care risks of the LGBT population and how to develop competent, compassionate care • Tailor counseling to individual risk factors, needs, preferences, and abilities of each health care consumer

How Do We Improve? • Screen for risk without assumptions • Take a proper sexual history • Create all-inclusive patient forms • Create a safe environment • Staff development

Forms/Paperwork • Gender/pronoun training • Add “partner” wherever “spouse” is used • “Relationship status” instead of “marital status” • Ensure confidentiality and clearly state the only instances when confidentiality may not be possible

Screening for Risk • Providers often assume heterosexuality; heterosexism “How many men have you been with?” CLOSED QUESTION!! • Many lesbian identified women and gay identifying men have had sexual intercourse with the opposite sex at some point during their lives and some continue to do so at irregular intervals.

Considerations for Bisexual Persons • Sexual behavior may not differ significantly from that of heterosexual or lesbian/gay people. They may: Be monogamous for a long time and still identify as bisexual • Be in multiple relationships with the full knowledge and consent of their partners. • Have been treated as confused, promiscuous, or even dangerous. • Be on guard against providers who assume they are “sick” based on their having sexual relationships with more than one sex. • LACK comprehensive safer-sex info that reflects their sexual practices and attitudes • Benefit from thorough discussions about sexual safety.

Considerations for Transgender Persons • Special considerations when assessing the sexual history of transgender people: Do not make assumptions about their behavior or bodies based on their presentation • Ask if they have had any gender confirmation surgeries to understand what risk behaviors might be possible • Understand that discussion of genitals or sex acts may be complicated by a disassociation with their body; this can make the conversation sensitive or stressful for the patient.

Create a Welcoming Environment • LGBT patients often “scan” an office for clues to help them determine what information they feel comfortable sharing with their health care provider. • –Unisex bathroom signs • –Posters with racially and ethnically diverse same-sex couples or transgender people • –Visible non-discrimination statement stating equal care is provided to all patients, regardless of age, race, ethnicity, physical ability or attributes, religion, sexual orientation, or gender identity/ expression-AND STAFF WHO MEAN IT!!

Language • Listen to patient’s description of their own sexual orientation, partner(s) and relationship(s); Reflect their choice of language. • Individuals may have reclaimed the terms such as “queer,” “dyke,” and “fag” to describe themselves, BUT these terms have a history of being derogatory. They are not appropriate terms for providers who have not yet established a trusting and respectful rapport with the patient. • When in doubt, ASK how to refer to a patient, ASK what word or phrase they prefer.

Language • Avoid using the term “gay” with patients even if they have indicated a same-sex or same gender sexual partner. Patient themselves may not have indicated a particular identity or have indicated a sexual orientation other than “gay,” • Follow the patient’s lead about their self description (which builds respect and trust). Explore how this relates to their current and potential medical needs. • Respect transgender patients by making sure all office staff is trained to use their preferred pronoun and name. Clearly indicate this information on their medical record in a manner that allows you to easily reference it for future visits.

Staff Sensitivity and Training • Circulate these Guidelines to all administrative, nursing, and clinical staff. Training for ALL staff is critical to creating and maintaining practice environments deemed safe for LGBT patients. • Training should be periodic to address staff changes and keep all staff up-to-date. • Designate an on-site LGBT resource person to answer any questions that arise in the interim. • ONE ISSUE CAN GO A LONG WAY TO LABEL YOUR PRACTICE AS UNFRIENDLY

Staff Sensitivity and Training • Understand that discrimination against LGBT patients, whether overt or subtle, is as unethical and unacceptable—and in many states as illegal— as any other kind of discrimination. • Make it clear to employees that discrimination against LGBT patients “will not be tolerated.” • Monitor compliance and provide a mechanism for patients to report any disrespectful behavior.

Body modification • Changes a trans person makes to their body to feel more at home or comfortable based on their gender identity • Ways individuals may decide to modify their body include: • Binding or tucking • Laser hair removal • Silicone injections • Minor or major surgeries • Hormones • May be permanent or temporary • Not necessarily all, or one before other

Deciding to “transition” • Body modifications reduce psychological distress of being in body that does not align with perceived gender identity • Not always Male to Female or Female to Male • Some people use terms like “wanting to pass” and others are more comfortable as gender neutral, or desiring mixed gender appearance • What is important? • accurate information about risks and expectations • Thoughtfulness about individual’s transition plan, how will impact interactions with family, friends, society, coworkers, peers • Team approach with trans friendly providers who empower the individual • Ability to give informed consent

The reality is… • Trans people experience discrimination, marginalization, oppression at very high rates • Notably, within medical establishments • Directly leads to inadequate health care • Often leads to inadequate education, economic hardship • Which leads health disparities and cycles of inequality

Barriers to Education • National Transgender Discrimination Survey n=6400 • 61% reported experiencing significant abuse in educational settings • Of these who experienced abuse in educational settings (including physical abuse by teachers and expulsion): • 25% were currently or formerly homeless • Of those who left school because of the abuse • Rate of HIV infection is greater than 5% (more than 8 times the infection rate for rest of U.S.) National Transgender Discrimination Survey (NTDS) Report (2010) accessed at www.transequality.org

Unstable Housing • NTDS Survey: One fifth felt they experienced unstable housing because they are trans. • 30-40% transgender female (MTF) have ever experienced homelessness • 59% reported ever engaging in survival sex • 49% who had used hormones in past 3 months got it from friends or off the street

Income • NTDS Report: • Double the unemployment rate • 26% lost job because they are trans • 97% experienced mistreatment, harassment, or discrimination on the job • Finding employment is challenging • Employment linked to insurance • Since often required to pay for hormones out of pocket, lack of income and poverty impacts ability to stay on hormones regularly

Barriers to Accessing Healthcare • 19% were refused care due to transgender or gender non-conforming status • 28% experienced verbal harassment in medical setting • 2% experienced being physically attacked while in doctor’s office • 50% had to teach medical provider about transgender care • 28% postponed or avoided seeking medical care when sick or injured due to discrimination or disrespect Data from National Transgender Discrimination Survey Report (NTDS) released 10/13/2010 by National Gay and Lesbian Task Force

Inadequate or no healthcare • Many people don’t have trans-knowledgeable health care providers in their area • Many insurance companies do not fully cover hormones and hardly ever cover surgeries • Many are uninsured completely, creating an additional barrier to all health care • Youth may be on parent’s insurance, if parents are unsupportive they may not be able to use it for hormones or surgery • Trans health and hormone management is not taught in medical or nursing school

Harm Reduction Approach • High proportion of trans people do not have access to safe hormones - experience very high rates of isolation, discrimination, unemployment, lack of insurance, housing. • Many young trans women of color work in street economy or sex trade in exchange for hormones or $ to buy hormones putting them at high risk for violence, HIV/STDs, incarceration • Other folks find ways to buy hormones online due to barriers in accessing care (rural areas, jumping through hoops) • Many people take these risks instead of continuing to live without hormones • without hormones they often experience very high rates of depression, anxiety, suicide. • Without hormones it is very difficult to live in identified gender and not experience harassment, discrimination, abuse

Harm Reduction Approach (cont’d) • Empowerment and reducing harm can look like: • Safer injection teaching • Needle exchanges • Std/hiv testing and counseling on safer sex • Connecting with trans community and supportive services around the city • Providing info about where and how they can get hormones safely

Identity Documents • State by state, birth certificate, passport • EHRS • ID • Insurance issues/coverage

Hormone Protocol • Informed Consent: • Consistent with other LGBT orgs in US and WPATH SOC version 7 • Three step process • Empowers clients with accurate information • Includes assessment by medical and behavioral health whether person has cognitive ability to give consent • Removes stigma that being trans means you have a chronic disorder or mental disease

Hormone Therapy Basics: Masculinizing and Feminizing regimens, effects

Baseline Laboratory Tests • Transmen:Hgb, HDL, LDL • Use M reference values Transwomen: Fasting lipid panel, CMP, use F reference values and use body/muscle mass when taking creatinine into account

Healthcare for Trans and Gender Non-Conforming Individuals