Fears and concerns about accessing health care (reprinted from “When Health Care Isn’t Caring: Lambda Legal’s Survey of Discrimination Against LGBT People and People Living With HIV” [New York, Lambda Legal, 2010]).
Nick Gorton and Hilary Maia Grubb
WHEN TALKING ABOUT COMMUNITIES WITH LIMITED ACCESS TO HEALTH CARE, the focus is often on illnesses and diseases that are more common or more severe in those communities. Discussions about transgender health often concentrate on our higher rates of HIV, lack of access to primary care providers, vulnerability to interpersonal violence, and silicone injection. It is critical to address these conditions that threaten our health and welfare. However, it is also important to understand transgender health in terms of physical, mental, and social well-being. Health represents a positive state of wellness, strength, and stability; not simply the absence of illness.
Our health is impacted by our environments and communities. These include where we grow up, live, work, and seek health care services. Many health care providers, researchers, and educators have focused on these areas, also called the “social determinants of health.” If we cannot find a find job due to being trans, we may be unable to afford food or safe housing. We might then need to access underground methods of survival and engage in sex work in order to have money to eat and pay rent. Doing this exposes us to increased risk of violence, HIV, and other sexually transmitted infections (STIs), and mental health issues such as depression and suicidality. We might have no choice but to live with an abusive partner because we cannot afford to move out. We may not be able to afford to see a health provider who knows how to prescribe and manage hormone therapy, so we might buy hormones on the street. Without a provider monitoring hormone therapy, we could have complications that go unnoticed, such as diabetes or a blood clot in the leg. Social determinants of health are linked to stable employment, a safe home and environment, access to transgender-sensitive and competent health care, healthy food choices, and opportunities to exercise.
Some social determinants of health are unique to trans people. One of the most important is access to health care that is safe and does not discriminate against us because we are trans. This includes hormone therapy and surgical procedures, but we have needs similar to cisgender people too, such as vaccines, treatment of high blood pressure and asthma, and screening for diseases like colon cancer. Unfortunately, transgender people are less likely than cisgender people to have these needs met, and we face many barriers to maintaining good health.
Many of us have delayed or avoided health care and health maintenance screenings because of negative interactions with the health care system. We have been denied care because our providers refused to see us or because our insurance company would not pay. We have waited disproportionately longer. We have been asked to fill out forms with boxes that do not describe us. We have been called names or pronouns that are accidentally or deliberately incorrect. We have heard biased and harassing comments from clinicians and staff. We have had unnecessary or prolonged physical exams. We have been denied access to safe and appropriate bathrooms. We have been assigned to inappropriate hospital rooms. And the list goes on.
“I avoid health care providers due to my gender identity. I experienced severe discrimination when I identified myself as queer in terms of sexual orientation, and I realize that gender is even less understood.”
Fears and concerns about accessing health care (reprinted from “When Health Care Isn’t Caring: Lambda Legal’s Survey of Discrimination Against LGBT People and People Living With HIV” [New York, Lambda Legal, 2010]).
Bias and discrimination in health care settings are not only unethical but also violate law and policy in many areas. It is critical that health care providers respect us; have a basic knowledge of social, medical, and surgical transition; and be aware of the specific health concerns of our communities. To improve our general health, it is important to focus not only on hormones and surgery: we must also address our environment and community. We need transgender-focused job fairs, transgender-friendly homeless and domestic violence shelters, transgender cultural competency education for police departments, and access to appropriate identity documents. One of the meanings of “to heal” is “to make whole.” Making our homes, jobs, streets, hospitals, grocery stores, doctors’ offices, and neighborhoods safer—free of discrimination and bias—will be one step in the right direction.
I was refused needed health care (reprinted from “When Health Care Isn’t Caring: Lambda Legal’s Survey of Discrimination Against LGBT People and People Living With HIV” [New York, Lambda Legal, 2010]).
Transgender and gender nonconforming people have existed throughout history, but only in the past century has the medical profession been able to provide help to change our bodies to match our gender identities. In 1917 in the United States, Dr. Alan Hart underwent a hysterectomy and eventually a mastectomy to help him live his life as a man. In 1930, Lily Elbe had the first of five surgeries in Germany to transition from male to female. Almost as soon as synthetic sex hormones were available, physicians provided them (or transgender people obtained them) to transition medically.
Christine Jorgensen’s public transition in the early 1950s increased general awareness about transgender people. From that time until the 1980s, transgender care became more available at academic medical centers. However, in the early 1980s, dozens of academic medical centers in the United States closed their doors to transgender people seeking transition-related care. This was set in motion by the closure of the first and most well-known gender identity center at Johns Hopkins University School of Medicine in Baltimore.
The program at Hopkins Gender Identity Clinic closed under the direction of then-chairman Dr. Paul McHugh. Dr. McHugh argued that transgender women were “caricatures of women. They wore high heels, copious makeup, and flamboyant clothing; they spoke about how they found themselves able to give vent to their natural inclinations for peace, domesticity, and gentleness—but their large hands, prominent Adam’s apples, and thick facial features were incongruous (and would become more so as they aged).” Dr. McHugh set out to study trans women and to discredit what he viewed as a “misdirection of psychiatry” that allowed some of us to access hormones and surgery (McHugh, 2004, p. 34). In his later writings, he explicitly stated his perspective on the gender identity program at Hopkins: “It was part of my intention, when I arrived in Baltimore in 1975, to help end it” (McHugh, 1992, p. 501). Indeed, an influential research study conducted by psychiatrist Jon Meyer and coinvestigator Donna Reter under McHugh’s direction (Meyer & Reter, 1979) resulted in the closure of many academic medical center transgender care programs.
This study compared transgender women who were offered surgery to those who were not (Lombardi, 2010). There were serious problems with the methodology of this study, and subsequent criticisms suggested that its conclusions were motivated more by politics than good science (Lothstein, 1982; Pfafflin & Jung, 1998). In addition, the paper did not conclude that transgender women had poorer outcomes with surgery; in fact, they had the same or better outcomes in each area measured in the study, and they experienced a better overall sense of well-being. However, the amount of improvement did not reach statistical significance, so the paper concluded that surgery was of no benefit.
This conclusion is at odds with the vast majority of research on transgender people who are offered gender-affirming surgical treatments. However, because this study came from the first and biggest US academic medical center that provided transgender care, it had tremendous influence and was reported in the popular press at the time (Brody, 1979). Furthermore, the study was used to justify the closure of every other gender program at US academic medical centers (except for the University of Minnesota Program in Human Sexuality, which has operated continuously since 1970 and provided patient care since 1973). After the closure of these gender programs, almost all care for transgender people in the United States was provided outside of mainstream academic medicine.
Around the same time, most insurance coverage for transgender care was eliminated if it existed. While, over the last decade, this has begun to change due to the efforts of countless advocates and activists, to this day most insurance policies expressly exclude transgender care (Transgender Law Center, 2012). Part of the justification for these exclusions was based on Meyer and Reter’s conclusions that transgender care is experimental and has not been proven to improve health outcomes (Meyer & Reter, 1979).
Fortunately, as a result of transgender care leaving academic medical centers and being provided in community settings, the development of a more patient-centered model of transgender medicine is happening in many places. Activists in the United States are working to expand insurance coverage of transgender care. Ultimately (though he did not intend it) Dr. McHugh’s schemes at Hopkins may have inadvertently made positive change in transgender medicine possible. His closure of the Hopkins program may have pushed us further toward the goal of culturally sensitive and affordable transgender care.
Christoph Hanssmann, MPH, is a doctoral student in sociology at UC San Francisco, where he is conducting research on classification, care, and citizenship as they pertain to trans health.
“Transgender” is a name and a category for which many gender nonconforming people have fought. It hasn’t come easily, and we’re still called by a lot of other names. For some of us, the term “transgender” is too broad. For others, it’s too restrictive. It is important to pay attention to what it makes possible and what it limits in its use as a category.
When it comes to “transgender” (or other similar categories, like “trans” or “trans*”), it is important to consider its emergence over time. Nineteenth- and twentieth-century US and European sexologists were very keen on classification, generating cascades of names and descriptions of “deviant” bodies, genders, and sexual desires. It was through the acts of naming and expert classification that “pathologization” emerged.
One of the ways gender nonconforming people fight pathologization is by naming ourselves. But because much of our scrutiny has focused on how other people have categorized us, we have failed to truly analyze what has gone into these processes of self-categorization. Within any group, some voices are inevitably granted more credibility than others. This begs the question: Who, within a community, determines “who we are” and how we should be defined?
Trans health is an important place to consider the effects of categories on different people—whether these are categories that “we” claim, or whether they are thrust upon us (or a combination of the two). “Transgender,” as a category, collectivizes us. But it can sometimes offer a false sense of the “us” that makes up that collective. If trans health is exclusively concerned with gender-confirming surgeries, for example, it overlooks the health needs of those who do not pursue these. This narrow version of trans health also solidifies the idea of “transgender” as only being possible as a category through bodily modification—even though we are well aware that there are many more ways to be trans. Conceptualizing trans health broadly allows for a much more expansive reach and focus. In the broad sense, trans health can center anything—from ending police violence and homelessness to ensuring access to all forms of health care.
Trans health and care entails focusing most scrupulously on those for whom chances for survival are most severely compromised. We can see patterns in what happens to those of us who are viewed as diverging from the norm. For example, CeCe McDonald—a black trans woman who defended herself against a life-threatening attack—was criminalized by the same system that has also criminalized non-trans black women resisting violence.
Fostering health and survival for all “transgender” people requires paying close attention to how differences along lines of race, class, geographic location, age, sexuality, and disability make a difference in individuals’ experiences. Thinking inclusively about trans health means thinking not just about whether a person experiences medical neglect, or whether surgeries, hormones, or electrolysis are reimbursable—it also means fighting violence and profiling, abolishing prisons where medical neglect is the norm, expanding welfare benefits and Medicaid access, redistributing wealth, fighting forced sterilization in the United States and abroad, and many more intersecting issues.
By no means must we dispose of “transgender,” “trans,” or “trans*” as categories—indeed, they have been quite useful, and for some of us they feel like home. But we must keep asking whether they take good care of us, and who the “us” is that gets the most tender care within its embrace (Mol, 2008).
REFERENCE
Mol, A. (2008). The logic of care: Health and the problem of patient choice. New York, NY: Routledge.
Although many people in the general US population are uninsured, transgender people are less likely to have insurance than cisgender people. There are many reasons for this, but the most significant is that transgender people are less likely to be employed than cisgender people, and most people are insured through an employer. In addition, because transgender people have more difficulty obtaining identity documents with the appropriate name and gender, we may have more difficulty applying for public insurance, even if we qualify.
Medicaid is a public insurance for some low-income people. In most states, Medicaid programs do not cover any transgender care despite federal laws requiring they do so (Title XIX, 440.230(c)). Individuals in some states have challenged their state Medicaid offices and won treatment for their specific cases by proving medical necessity. Currently, only California’s state program explicitly covers a comprehensive range of treatment options, including surgery. In states with coverage of transition-related care, it can be very difficult to find a surgeon because payment rates are often so low that after the bills are paid a surgeon can lose money. —Ronica Mukerjee FNP, LAc
For those of us who have insurance through an employer, the majority of us have policies that exclude transgender care. This is steadily changing, with more and more employers offering inclusive insurance. According to the Human Rights Campaign’s (HRC) Corporate Equality Index, 340 private companies currently offer at least one transgender-inclusive health care plan. Furthermore, 28% of Fortune 500 companies cover comprehensive transgender care for employees (Human Rights Campaign, 2013). In addition, California, Colorado, Oregon, Vermont, and the District of Columbia now outlaw insurance plans from excluding medically necessary care for transgender people. However, even when an employer offers insurance that covers transgender medical care, it may be difficult for us to find a provider who both provides the care we need and also takes our insurance. In addition, because of co-payments or travel expenses to see specialists, there can still be a considerable cost associated with accessing necessary care.
Fearing denial of care, many of us choose not to inform our insurance providers of our transgender identity. This can be risky because if insurers subsequently discover our transgender status they may retroactively deny care and seek repayment. It can also be difficult to sustain because insurers receive a great deal of information about us from different sources in order to pay for care. Information comes from health care providers, pharmacies, labs, and others.
“Until my nurse practitioner wrote me a letter to change all of my legal paperwork to say female, they would not cover my estrogen. But now my insurance covers it because my gender marker matches the hormone I am being prescribed.”
Medicare is public insurance for those over 65 years old. Unlike Medicaid, there is no provision in Medicare that can be interpreted to require coverage for transgender care. The coverage determination written in 1981 states that treatment is experimental but is being reviewed. —Ronica Mukerjee FNP, LAc
Since insurers use gender designations on insurance forms to determine what care is needed, transgender people are faced with choosing which designation is most appropriate. For example, if a transgender woman lists “F” (for “female”) on her insurance forms, she may be able to obtain coverage for estrogen prescriptions and mammograms, but she may be denied care for prostate issues. Likewise, if a transgender man selects “M” (for “male”), his insurance may cover testosterone prescriptions, but it may reject claims for a Pap smear. Even in the best case where an insurance company covers transgender-related care, obtaining authorization overrides for care specific to the sex assigned at birth may delay care and payments.
Many of us have commercial insurance like Aetna or Blue Cross/Blue Shield, which we purchase ourselves or is provided by our employers. Commercial insurance policies most often have a specific exclusion for coverage of transition-related surgeries. Some have a prohibition for any kind of transition-related treatment altogether. However, in recent years, there has been a growing trend among large employers to cover treatment. Some states, including California, Oregon, Colorado, and the District of Columbia, have issued regulations or guidelines that bar exclusions for trans care.
“I have insurance that has an exclusion on trans-related care. None of my transition-related care has been covered. I also pay out of pocket for gynecological care because I am listed as male on my insurance. This can be expensive. For example, I paid $1, 000 for an ultrasound to screen for ovarian cancer because I was experiencing severe pelvic pain. I will pay out of pocket for my hysterectomy and oophorectomy. My wife and I make a good living, but these costs put a strain on our budget. We are giving up the money we have saved on a down payment for a house to pay for my hysterectomy and oophorectomy.”
With the full provisions of the US Patient Protection and Affordable Care Act (ACA), many of us may be able to obtain public or private insurance. Each state under the ACA can determine the minimum necessary benefits (in addition to the federal standard) that must be included on policies available on the exchanges in that state. This means that some states may include transgender care while others may not. The ACA does include language that protects against discrimination based on sex, which has been interpreted as covering gender identity. However, how this will affect inclusion of transgender-specific benefits in insurance exchanges remains to be seen. The US Department of Health and Human Services (HHS) has issued a clarification that this does not mean that insurance will be required to cover transition-related surgery, but they have not clarified what this means with respect to other treatments. It is likely that this provision will be argued in court—possibly multiple times in multiple states.
The Veterans Health Administration (VHA) provides medical care for veterans. The VHA issued a directive in 2013 that trans veterans are entitled to all necessary preventive care, hormone therapy, mental health services, preoperative evaluations, and postoperative care. The VHA does not currently provide for transition-related surgeries.
In addition to the ACA providing more access to private insurance, it will increase the number of people eligible for Medicaid, public health insurance for those of us with low income levels. Included in the ACA is a Medicaid expansion that will encourage states to cover more people. In states that participate in the expansion, Medicaid will cover everyone with incomes up to 133% of the federal poverty level. Since transgender people are more likely to live at or below the poverty level, many more transgender people will be newly eligible for Medicaid.
TRICARE is government insurance for military service members and their families. TRICARE is unlikely to pay for any trans-related health care. Transgender identity remains a reason for discharge from the military.
“I was on charity care at one particular hospital and on sliding scale at Country Doctor for many years. Because I’ve been extremely low income for the past 10 years (with the exception of one 8 month stint), my health care has always been a patchwork job based largely on where I could get free or cheap trans friendly care.”
Many students have health care insurance through their universities. A growing number of colleges cover transgender medical and surgical treatments for their students.
In California and Oregon, laws mandate nondiscrimination in provision of health insurance regarding gender identity and expression. Recently in both states, these laws have been interpreted to mean that insurers may not deny transgender people care that is provided for cisgender people for different diagnoses. For example, if an insurer pays for hysterectomy to treat cervical cancer in cisgender women (or in transgender men, for that matter), the insurer must also pay for hysterectomy in transgender men to treat gender dysphoria. In California, Medi-Cal (the California Medicaid program) covers medically necessary transition-related care according to guidelines from the World Professional Association for Transgender Health (WPATH). In other states, some individuals have succeeded in getting transition-related care covered by Medicaid. However, even in cases where Medicaid does cover care, finding providers skilled at providing this care that will accept the very low Medicaid rates can be difficult.
Transgender people and allies who wish to work on furthering positive change for insurance coverage can seek more information in the Transgender Law Center’s online guide Organizing for Transgender Health Care.
The San Francisco Experience
In 2001, the City of San Francisco decided to offer transgender medical and surgical coverage in all of its contracted health plans covering city employees. It was estimated by insurance professionals that the monthly cost would increase by $1.70 per employee, a total monthly cost of $170, 000 given the 100, 000 employees of the city. As you might imagine, paranoia set in and people were concerned that San Francisco, already a transgender mecca, would attract every transgender person in the country and bankrupt the system. Instead, over the years 2001–2006, the monthly cost was gradually reduced due to low claims costs. In 2006 it was determined that a total of $386, 417 had been spent over the past 5 years on all transgender-related claims, while $5.6 million had been collected. At this point, the additional monthly cost was eliminated completely, and transgender health care is now packaged with other routine health care services such as blood pressure management or gallbladder surgery. If the cost was this low in a city like San Francisco, it is likely even lower in other places with smaller transgender communities.—Maddie Deutsch, MD
Primary care is our first stop in the health care system. Primary care providers (PCPs) are trained to diagnose and treat almost any health care problem regardless of the cause, the diagnosis, or the system of the body involved. They also provide ongoing care for chronic problems, offer services to prevent or screen illness, coordinate specialized care, advocate for patients in the health care system, and focus on treating the whole person.
“[A comfortable health care environment] includes referring to me with my chosen pronoun (he, him, their); being friendly and accepting; taking time to answer questions; having literature about LGBT organizations or having progressive magazines. [An uncomfortable environment can result from] not having a box on the medical form for Transgender identity; being cold and aloof; intentionally calling me with female pronouns; attempting to hurry through the visit; no knowledge of the WPATH standards of care.”
For transgender people, having a PCP is especially important. While increasingly more providers are sensitive to and knowledgeable about transgender patients’ needs, many remain uneducated about our health. Because of this, advocacy and care coordination roles for PCPs are even more important. For example, if we need referral to a cardiologist, a PCP can speak with that provider before referral to ensure the specialist feels comfortable with transgender patients and can encourage sensitivity among staff. Additionally, because some transgender patients avoid health care as much as possible due to negative past experiences or fear of negative encounters, a PCP who provides comprehensive care can decrease the care we have to obtain outside of familiar safe spaces. For example, a PCP trained in some gynecologic procedures can provide gynecologic care for transgender men without requiring referral to a gynecologist.
“I have a wonderful primary care physician who I found strictly by accident. She turned out to not only be LGBT friendly but also had an interest in transgender health care. At first she didn’t really know much about transgender health, but when she didn’t know, she contacted colleagues to find the answers. She has had such an interest in transgender care that she asked me to participate in resident round table discussions with family medicine residents to better find out how to meet our health care needs.”
“I found a trans* positive doctor (who is actually trans* herself). She is incredibly respectful and knowledgeable.”
“When I turned 18, I needed to find an adult provider, so I picked somebody whose name I liked, called his secretary, and asked if he had experience with people with my medical issues (yes) and whether he had experience with transgender people (no) and whether he was open to seeing a transgender patient (he’s open to all kinds of people). He has been great about respecting my identity. He put down my sex as male even before I was on testosterone, and referred to me by male pronouns and with my given name before I had my name change finalized, despite the fact that my mother was there and using the wrong name and pronoun at the first two visits I had with him. I had initially hoped that he would be willing to put me on testosterone, but he says I’m the only transgender patient he’s aware of having, and he’d rather I saw somebody with experience in that area, so I see another doctor as well.”
In the Northeast, clinics with a specialty in transgender health care include the Hartford Gay & Lesbian Health Collective, Fenway Health (Boston), Tapestry Health (Northampton), and Green Mountain Gender Clinic (Vermont).
Preventive care is proactive health care to prevent and diagnose disease as well as to identify harmful health-related behaviors early enough that poor outcomes can be prevented. Some of the leading causes of preventable death in the United States include poor diet and physical inactivity, tobacco smoking, alcohol and drug use, and STIs, including HIV. Like many groups experiencing discrimination, transgender people have elevated rates of harmful health-related behaviors compared to the general population. The greater prevalence of these behaviors in our communities is partly a reflection of the stress arising from bias, discrimination, harassment, and violence.
New York has a number of clinics with trans health care providers: APICHA Community Health Center, Callen-Lorde Community Health Center, Gay Men’s Health Crisis, Beth Israel LGBT Health Services Center, and William F. Ryan Community Health Center.
In our body-obsessed culture in which “you can never be too rich or too thin,” size can be something that we use against each other and against ourselves. Medical providers are often trained to prioritize the body mass index (BMI)—used to categorize people as “underweight,” “healthy weight,” “overweight,” or “obese”—as a measure of health. However, many people with BMIs above the “normal” range are perfectly healthy. Fat-positive activists seek to challenge fatphobia in our society just as we might challenge transphobia, cissexism, racism, classism, and other forms of personal and institutionalized bias. Part of our general health is connected to our capacity to determine a healthy size for ourselves as individuals, rather than being driven by media portrayals of a feminine or masculine ideal.
In California, clinics providing transgender care include the LA Gay & Lesbian Center and the San Francisco clinics Tom Waddell, Lyon-Martin, Dimensions, and Castro-Mission Health Center.
Although there is evidence that lesbian-identified women are at increased risk of obesity compared to their heterosexual peers, there are limited data regarding obesity risk in trans people. Taking either estrogen or testosterone is correlated with weight gain and can be associated with increased risk of developing certain health problems like diabetes and heart disease (Gooren et al., 2007). Therefore, when starting hormone replacement therapy it is especially important to embrace balanced nutrition and healthy exercise regimens. For some of us, the process of initiating gender-affirming treatments helps us value our bodies more and feel motivated to stay as healthy as possible.
The Whitman-Walker Clinic in Washington, D.C., and Chase Brexton Health Services in Baltimore have a focus on LGBT health.
Many guidelines recommend moderate-intensity exercise for 30 minutes, 5 days per week. “Moderate intensity” can mean we are able to carry on a conversation while exercising, but not able to sing a song. Walking briskly is an easy, inexpensive way to engage in moderate-intensity exercise. For those of us with busy schedules, we may feel like we do not have 30 minutes per day to devote to exercise. However, evidence shows that walking for 10 minutes, three times per day has similar benefits for weight loss and cardiovascular health as walking for 30 minutes continuously. Taking the stairs really can make a difference.
Cover of Freeing Ourselves: A Guide to Health and Self-Love for Brown Bois (art by Rebecca Emmanuelle Photography/Micah Bazant Designs).
In Chicago, the Center on Halsted and Howard Brown Health Center both have transgender health programs.
Some of us feel such intense pressure to appear thin that we develop restrictive eating patterns or force ourselves to throw up. There is also evidence that cisgender gay-identified men are at greater risk for developing eating disorders such as anorexia and bulimia. However, there are limited data regarding eating disorders in trans people. Unfortunately, most eating disorder treatment programs are segregated by gender, and few eating disorder programs currently address the specific needs of our communities. For those of us looking for help with eating disorders, we may want to start with our PCP. Trans-knowledgeable PCPs can sometimes point us toward a provider or clinic that they believe will be especially trans-friendly.
In Texas, Legacy Community Health Services in Houston and The Resource Center in Dallas provide trans health care.
In the Midwest, the University of Michigan Comprehensive Gender Services Program (Ann Arbor), the University of Minnesota Program in Human Sexuality (Minneapolis), and MetroHealth Pride Clinic (Cleveland) provide trans health care.
The Mazzoni Center in Philadelphia and the Persad Center in Pittsburgh provide trans health services to Pennsylvanians.
In Canada, Vancouver Coastal Health (B.C.), Nine Circles Community Health Centre (Winnipeg, Manitoba), Sherbourne Health Centre (Toronto), Sandy Hill Community Health Centre (Ottawa), and Rainbow Health Ontario provide trans health care.
Ryan K. Sallan’s memoir Second Son: Transitioning Toward My Destiny, Love, and Life tells the story of a trans man who battles anorexia (Greenbay, WI: TitleTown, 2012).
One additional factor to consider in constructing our diets and exercise plans is our bone health. There are a number of ways to improve our bone health and prevent osteoporosis (decreased bone density that can lead to fractures), including taking in enough calcium and vitamin D, as well as doing weight-bearing exercise. As trans people, our bone health can be affected by surgeries that remove our gonads (ovaries or testicles) or our hormone treatments. Estrogen is known to be protective for our bones, and taking either estrogen or testosterone may help to protect our bones because some testosterone is converted to estrogen in our bodies. Trans women who have had orchiectomies (removal of the testicles) who are not taking estrogen, and trans men who have had oopherectomies (removal of the ovaries) who are not taking testosterone may be particularly at risk because their bodies do not have the protection of estrogen. Talk to your health care provider about whether you should undergo a screening test (DEXA scan) or should be changing your diet, exercise, or taking medication to prevent osteoporosis.
Arlene (Ari) Istar Lev is a social and family therapist who specializes in working with LGBT families in Albany, New York.
My original copy of Our Bodies, Ourselves is tattered and torn, yellow with age. I read the original in my late teens or early twenties, and the chapter called “In America They Call Us Dykes” astonished and titillated me. I stared at the picture of the strong, brazen dyke at the opening of the chapter. She represented everything that liberation held possible.
The other part of Our Bodies, Ourselves that I vividly remember is a story of a mother in the bathtub with her young daughter. The daughter asks why Mommy doesn’t have a penis like daddy does. Mommy says, “Because I have a clitoris.” The girl asks can you show me, and her mom does just that. I have often contemplated how different my life would’ve been, how different the lives of so many women would’ve been, with this simple event happening early in our lives.
I joined the Berkeley Women’s Health Collective in the late 1970s because I saw myself as part of this great women’s health movement that was exemplified in Our Bodies, Ourselves. I taught self-breast and self-speculum exams. We started the first lesbian health clinic in the country.
Fast forward 15 years, and I am a therapist specializing in working with LGBT people and their families. Some of my clients are middle-aged transgender women who are seeking gender confirmation surgery after spending much of their lives fantasizing and desiring to live as women. I realize as I’m listening to their struggles for authenticity that some of them know very little about women’s bodies, particularly about how women’s genitalia look or function. Struggling to reconcile my early feminist worldview with my growing trans-positive queer sensibility, I often stumble. I find myself more than a bit shocked that someone could be so driven to be a woman that they are willing to spend a small fortune on life-threatening surgeries to have women’s genitalia, but yet they are not exactly sure how cisgender women’s bodies actually look.
In these moments, I put down my feminist ruminations and pull my worn copy of Our Bodies, Ourselves off the shelf. I show them pictures of women’s bodies, images of a diversity of vulvas and clitorises. Sitting there with the book between us, sister to sister, I realize that Our Bodies, Ourselves has been a text that wears incredibly well with time. I realize that in some ways transsexual women’s ignorance about their own bodies and desires is no different from my own once upon a time, and no different from the experience of most cisgender women. I confess I never thought 30 years ago that I would—or could—use Our Bodies, Ourselves as a resource for transsexual women, yet my 1970s feminism has laid the foundation for the queer health activism I still practice over 30 years later.
Because most studies of alcohol and other drug use have not included questions about gender identity, data about substance use in trans communities are limited. Some recent studies of transgender people in several large urban areas across the United States have identified substance abuse as a substantial concern.
Evidence indicates that rates of tobacco use among transgender people significantly exceed those of the general population. Since the mid-1990s, tobacco companies have made themselves highly visible in our communities via advertising, sponsorships, and promotions. In 1995, R. J. Reynolds actually created a campaign, internally named “Project SCUM” (an acronym for “Project Sub-Culture Urban Marketing”), that targeted LGBTQ and homeless people.
Tobacco use is a major risk factor for heart attacks, strokes, chronic obstructive pulmonary disease (COPD), and cancer. Studies have shown that smokers lose about a decade of life expectancy on average as a result of tobacco. Fortunately, quitting smoking can significantly reduce the number of years of life expectancy lost. For transgender women on hormone replacement therapy, smoking is an even greater risk. Smoking while on estrogen may increase the risk of developing a blood clot—otherwise known as a deep venous thrombosis (DVT)—in the legs or elsewhere in the body—that can migrate to the lungs and cause difficulty breathing or even death.
For those of us who want to quit, there are medical treatments available, including nicotine replacement therapy (NRT) such as the nicotine patch, gum, and lozenge; nicotine-free medications such as buproprion (Zyban) and varenicline (Chantix); and integrative treatments such as acupuncture and hypnotherapy. Health care providers can be excellent resources for information about local programs that support smoking cessation free of charge.
Scout, PhD, is the director of the Network for LGBT Health Equity.
There is a consistent pattern among available transgender smoking data, demonstrating that our population shares a profound smoking disparity with the intertwined LGB communities. The National Transgender Discrimination Survey provides our best information to date, showing transgender people smoke at rates that are 50% higher than the general population.
In the study, Black transgender people smoked at the highest rates, 150% higher than the general population. Undocumented people also smoked more than other groups, as did trans people with lower socioeconomic status. Transgender people who have been involved in street economies smoked at the highest rate of any subset in the survey. Gender spectrum also affects smoking rates, with female-to-male (FTM) spectrum people smoking at slightly higher rates than male-to-female spectrum (MTF) people.
Interestingly, the study also provided some insight into the relationship between stress and smoking. As would be hypothesized, people who experience less stress “passing” smoke at lower rates (27% versus 37% of those who do not pass). Congruent identity documents also improve smoking rates (25% versus 34% for those with no congruent documents). When researchers stratified Oregon counties by levels of acceptance of LGBT people, they found a positive correlation between acceptance and lower smoking rates.
Smoking is a pediatric epidemic; the average LGBT person begins by age 12. Current research and hypotheses directly connect the stigma and stress of growing up as “other” to youth turning to cigarettes for stress relief, and as a way to fit in with peers. In addition, when youth seek their adult trans or LGBT community role models, the higher smoking rate among the adults also lures the youth toward smoking.
The tobacco industry has proven very adept at using micro-targeting campaigns to engage specific population subgroups, including LGBT people.
Smoking is a broad-scale health depressant, specifically hindering circulation and the normal healing process. While rigorous research is lacking, there are numerous reports of doctors who will not attempt gender confirmation surgery for patients who smoke. At the extreme end of the spectrum, this author witnessed one doctor from Belgium attribute the failure of a phalloplasty surgery directly to the patient’s continued smoking.
For transgender smokers, the best current options for cessation are to do all of the following: (1) talk to your health provider about health impacts and medication options; (2) explore if cessation groups are available through your employer, insurance, or community center; and (3) call your state run quitline at 1–800–QUITNOW. If any of the above entities do not treat you in a respectful manner, contact the Network for LGBT Health Equity.
Abuse of alcohol and drugs like methamphetamine and heroin are significant problems in our communities. In addition to the risks of the drugs themselves, injecting drugs with shared needles carries an increased risk of contracting infections like HIV and hepatitis B and C. Another issue for transgender people who use drugs is the risk of arrest and prosecution. Prisons and jails are dangerous places for anyone, but especially for gender nonconforming people. In addition to the dangers associated with being housed in a jail based on our sex assigned at birth, we may be deprived of hormone therapy, thereby risking emotional trauma and, in some cases, regression of the effects of hormones on our bodies.
These concerns are complicated by the fact that recovery programs and rehab facilities may require strict binary male/female segregation based on our sex assigned at birth. Some may also require discontinuation of hormone replacement therapy. However, 12-Step Programs like Alcoholics Anonymous have meetings for transgender and gender nonconforming people in recovery, especially in urban areas.
Syringe exchange programs (“needle exchange”) exist in most states in the United States. Needle exchange programs are based on a philosophy of harm reduction and embrace the belief that all individuals who use drugs should have free access to clean supplies that will decrease their risk of contracting blood-borne diseases. These programs provide free sterile syringes and collect used syringes from people who inject drugs to reduce transmission of blood-borne pathogens, including HIV and hepatitis B and C. There is evidence that these programs reduce needle sharing and the use of dirty needles, as well as the transmission of HIV.
In addition to syringe access, many programs provide other equipment such as safer smoking supplies for people who smoke crystal meth and crack cocaine, safe sex supplies, and overdose prevention medications like naloxone injections (Narcan), which reverses an opiate (e.g. heroin, oxycontin) overdose and can be kept on hand by friends and family of people at risk. They also often offer HIV and hepatitis C testing and referrals, STI screenings, vaccinations for hepatitis A and B, and referrals for people who want to get sober.
Staying healthy also means staying safe. Unfortunately, because of discrimination and antitransgender bias in society, it is not always possible for us to be in safe environments. We are more frequently the victims of sexual assault than cisgender people (Balsam, Rothblum, & Beauchaine, 2005), and we are often the targets of hate-based crimes. However, many members of our communities distrust law enforcement and the criminal justice system due to decades of bias and discrimination. As a result, the majority of assaults against transgender people are never reported to the police.
Lifetime prevalence of intimate partner violence among transgender individuals is 35% (Ard & Makadon, 2011), which is more than double the prevalence for gay- or lesbian-identified individuals, and significantly higher than the 25% among cisgender women (Tjaden & Thoennes, 2000). A link between these experiences and posttraumatic stress disorder (PTSD) is widely suspected, but it has not been adequately documented.
We are less likely to be employed and financially independent than cisgender people, and we may need to stay with our abusive partners in order to have food and shelter, especially if we have children. Financial dependence can make it more difficult to leave an abusive relationship. Many domestic violence programs and shelters do not offer services to transgender people—some offer services only to cisgender women. Many of us worry about finding other partners because we have experienced discrimination and rejection from potential partners in the past—we therefore may be more inclined to stay in an unhealthy relationship. Since transgender people experience mistreatment and even violence from police, we may be much less likely to call 911 for help.
It is critical that our health care providers screen us for intimate partner violence just as they would screen other patients. In addition, a growing number of intimate partner violence agencies are receiving education in the needs of transgender (and LGB) individuals. In areas lacking trained agencies, we may seek support from a national LGBT antiviolence organization, such as the National Coalition of Anti-Violence Programs.
The National Domestic Violence Hotline is available 24/7 at 1–800–799–SAFE or TTY 1–800–787–3224.
As trans people, we can face more barriers getting tested for STIs, including HIV, than our cisgender peers. A sensitive sexual health assessment should identify our actual risk of STI exposure, which is based on sexual behaviors and the body parts involved, not on our sexual or gender identities. STI screening is guided by our actual risk level: high-risk sexual practices include receptive anal sex without a condom (“barebacking”), sex with multiple partners, sex with anonymous partners, and sex in conjunction with substance use. If we engage in these behaviors, we should receive STI screening every three to six months. If we engage in lower risk behavior, it might be OK to be screened annually. A good reason to get tested is that bacterial infections like chlamydia, gonorrhea, and syphilis are harmful but can be treated with antibiotics if they are found.
Our sexual behavior may change over time, and we might shift from high-risk to low-risk categories and vice-versa. It is important to remember that although providers will ask us whether we are experiencing any symptoms consistent with STIs, many STIs do not show symptoms so it is good to be honest about our behaviors, so we can be screened appropriately.
Although there are limited data about STIs in transgender people, there is good evidence of higher risk of STIs—including syphilis, gonorrhea, chlamydia, human papilloma virus (HPV), hepatitis A (HAV), and hepatitis B (HBV)—among cisgender men who have sex with men (MSM), and it may be possible to make a guess from these data that anyone practicing penile-anal sex would be at a similar risk. Transgender men and women who have sex with cisgender men (TMSM, TWSM) may be at higher risk than the general population for contracting both HAV and HBV, viruses that attack the liver. HAV can be transmitted by unprotected fecal-oral contact during sex (“rimming”), and HBV can be transmitted through exposure to infectious blood or bodily fluids such as semen and vaginal fluids. The Centers for Disease Control and Prevention (CDC) and other professional groups have long recommended that all cisgender MSM be vaccinated against HAV and HBV, yet many clinicians are unaware of this recommendation. Although no vaccination protocol exists for transgender people, we may speak with our health care providers for more information about our risk level, and whether this preventive step may be appropriate. Hepatitis C is another virus that attacks our liver, and it is spread when there is blood-to-blood transmission, such as blood transfusions, sharing needles for injections, unclean tattoo or piercing instruments, or certain types of sexual practices such as fisting or rough anal sex where blood is exchanged.
There is also evidence of underrecognition of STIs—including chlamydia, gonorrhea, herpes simplex virus, HPV, and trichomonas (“trich”)—in cisgender women who have sex with women (WSW), and it may be possible to assume from this that anyone sharing sex toys, oral-vaginal sex, or vaginal-vaginal sex/rubbing could transmit these infections as well. Chlamydia, gonorrhea, and trich are especially important to know about for individuals who have an upper reproductive tract (i.e., uterus and fallopian tubes). These infections are easily treated with antibiotics, but if left untreated may lead to pelvic inflammatory disease, which is dangerous and has long-term consequences such as pelvic pain and infertility. These STIs may be asymptomatic, which is why sexual risk assessment and screening are important, with follow-up screening and treatment as appropriate.
It is important to remember that health care screening is based on the organs present! In other words, if you’ve got it, check it! Transgender people with a cervix have gynecologic health needs, but our gynecologic health may suffer because of avoided, delayed, or substandard care. Our gynecologic health is also endangered by the common misconception among clinicians that transgender men do not require Pap smears or STI screening. Those of us with a cervix need Pap smears according to the same screening criteria for cisgender women.
Lauren Abern, MD, is an Ob/Gyn at the University of Miami Miller School of Medicine.
For those of us assigned female at birth, including trans men, the pelvic exam is an important part of preventive health. The pelvic exam can detect sexually transmitted infections and precancerous lesions, as well as help a health care provider to evaluate pain and abnormal bleeding.
The pelvic exam is sometimes difficult for cisgender women, and it can be even more so for trans men. Trans men may feel frustrated about having to do something medical that is so gendered, or worry that the provider will not be sensitive to their needs or how to talk about their bodies. The pelvic exam can also potentially be more physically uncomfortable for trans men because the vagina may have thinner lining and produce less lubrication. The best way to be prepared is to be educated about the components of the exam.
The pelvic exam has three parts. The first is inspection of the outside of the body, including the vulva and anus. This is done once you are on the exam table and your feet are up in stirrups.
The second part of the pelvic exam is the speculum exam. This consists of placing a speculum (a device that looks like a duckbill) into the vagina so that the provider can see the cervix and vaginal walls. A very small q-tip can be placed into the hole in the cervix, called the cervical os, in order to test for gonorrhea and chlamydia. A Pap smear is done by inserting a brush the size of a q-tip into the cervical os and swirling it around, then rubbing a small broom-shaped brush inside and around the os to pick up more cells. These procedures are followed in order to gather cells from the cervix so that they can be looked at under the microscope to determine whether they are cancerous. Those trans men who have had their cervix removed (this is sometimes done with a hysterectomy and sometimes not) do not require a Pap smear.
The third part of the pelvic exam is called the bimanual exam. This is where an examiner places a gloved hand into the vagina and another hand on your stomach. The hand inside the vagina will push the uterus up so the hand on the abdomen can feel the shape and size of the uterus. The provider will then push down on the sides of your abdomen to feel the ovaries. This is the part of the exam where any masses may be identified. The examiner is also checking to see whether any tenderness is present.
The pelvic exam can be uncomfortable for some people and not for others. It is important to discuss your needs during the pelvic exam with your provider so that they can work with you to make the exam more tolerable. There are also a few tricks to making it a little easier. First, ask your provider to start with the smallest sized speculum. Lubricant can be put on the speculum so it is not as painful during insertion. Pulling your knees apart as far as possible can make it a little more tolerable. A friend or a chaperone from the office can be brought into the room with you for support or distraction. The provider can also start up a conversation to get your mind off of the exam. There are people that feel a little more comfortable if they know what is going on during the exam. If this is the case, let your provider know so that they can talk you through it. The most important thing is finding a provider who you feel comfortable with and trust. For trans men, that may mean finding someone who has worked with other trans men, but it could also mean finding a supportive person without as much experience who is willing to learn.
Trans women who have had vaginoplasty do not need Pap smears because these are only necessary to screen for cervical cancer. However, they may benefit from speculum exams so that a provider can identify any visible lesions or infections. Trans women may want to request lubrication and the smallest available speculum, since the vaginal opening is often small. In addition, trans women should be sure to see their primary care providers for prostate care.
Many of us may have heard about the relationship between HPV and cervical cancer, but it is important to know that not all HPV causes cervical cancer. HPV is the most common STI, and there are over 100 different strains of the virus. Some of the strains are responsible for causing genital and anal warts, and some strains lead to the changes in the cervical cells or the cells inside the anus that can cause cervical or anal cancer. HPV infections occur through sexual or even intimate genital skin-to-skin contact with a person who is already infected, and unfortunately, barriers do not protect against HPV transmission as well as they do against other STIs.
Cervical cancer prevention is a good example of how powerful preventive health care is. Before Georgios Papanikolaou discovered that cervical cytology (the “Pap smear” or “Pap test”) could detect early changes that lead to cervical cancer, cervical cancer was the number-one cause of cancer death in cisgender women. Since then, in places where this testing is routinely available, deaths caused by cervical cancer have been reduced by 98% (DeMay, 2007). We also now have a vaccine to protect against HPV infection available to anyone age 9–26 years. Pap tests need only be done every three years once they are normal for three years in a row. The recommendations changed because research showed that in most people, doing the test every three years is as effective as doing it every year.
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People of all sexual orientations and gender identities who have a cervix are at risk of contracting HPV and developing cervical cancer if we are or have been sexually active, regardless of the sexual orientations or gender identities of our partners. It is a misconception among patients and providers that HPV can only be transmitted via penis-vagina sex among cisgender men and women. In fact, HPV infection on the cervix can occur in people with a cervix, of all gender identities, who have never had sex with cisgender men. Prevention of cervical cancer includes both immunizing young people against HPV and performing screening Pap tests to find early cervical changes so they can be treated before becoming cancerous. It should also be noted that cervical cancer is more likely to be diagnosed in individuals who smoke, those with compromised immune systems, and those who have not had regular Pap tests.
HPV in the anus can cause changes to the cells, and in some at-risk individuals, if it is not detected and treated early, the changes can develop into anal cancer. Anal cancer is more common in people who have HIV, anyone who has had precancerous changes on their cervix, and anyone who practices receptive anal intercourse. Recent data show that anal cancer is up to 80 times more common in cisgender MSM than in the general population. While little data exist regarding the incidence of anal cancer in transgender populations, it is important for people of all gender identities who have had receptive anal sex, have had anal warts, who are HIV positive, or have any condition that weakens their immune system, or had precancerous lesions of the cervix or vulva to speak with a health care provider about whether anal Paps are an appropriate part of preventive health care. The CDC has expanded its recommendations for the HPV vaccine Gardasil to include prevention of anal cancer, so if we are under the age of 26 we can ask our provider about the vaccine for protection against anal cancer in addition to cervical cancer (Huyett, 2011).
“Some transgender clients (and even some providers) worry about the effect of hormones on antiretroviral medicines. The good news is that there are almost no worrisome drug-drug interactions and we can continue hormone therapy, although small adjustments may occasionally be made in the dose. An antiretroviral drug called fosamprenavir could possibly be affected by estrogen, so we should let our providers know we are taking hormones if this is prescribed.” —Anita Radix, MD
In our communities, the rate of HIV infection is four times higher than the national average (Grant et al., 2011). In transgender women, the rate is six times higher. If we are homeless, the rate is eight times higher, and if we are engaged in commercial sex work, it is 25 times higher. Although these statistics are worrisome, it is important to remember that they stem from social determinants of health. If we are unable to obtain gainful employment, we may be more likely to engage in commercial sex work with its accompanying risk of infection with HIV and other STIs. Furthermore, due to many factors, including internalized reactions to transphobia, we are more likely to abuse alcohol and drugs, which can lead to increased sexual risk-taking. Current guidelines indicate that routine HIV screening is recommended for all people between the ages of 13 and 64 years.
In addition to obtaining Pap tests to decrease our risk of developing cervical or anal cancer, there are other cancer screening tests that are important for us. There are limited data on the cancer risks we may face as a result of hormone replacement therapy, although several providers and organizations (including the Vancouver Transgender Health Program and the UCSF Center of Excellence for Transgender Health) have examined the data that are available and have developed screening recommendations.
Screening for breast cancer is recommended for trans and gender nonconforming masculine-spectrum people regardless of medical or surgical history. Those of us who have had top surgery—even bilateral mastectomy—will have some residual breast tissue that is susceptible to breast cancer. Therefore, an annual clinical breast exam by a health care provider is recommended. Trans men who have not had top surgery require breast cancer screenings based on guidelines for cisgender women, including annual mammograms starting at age 50. Those of us with a family history of breast cancer may need to start screening mammograms earlier, and speaking to our health care providers can help us determine what is right for us. In theory, cross-gender hormone therapy in trans and gender nonconforming masculine-spectrum people could potentially increase breast cancer risk, due to the conversion of excess testosterone to estrogen, although there are limited data on this.
Trans and gender nonconforming feminine-spectrum people over age 50 with additional risk factors also require screening mammograms. Additional risk factors include estrogen and progestin use over five years, positive family history, and BMI greater than 35.
Those of us with ovaries, depending on family history, may require screening for ovarian cancer, particularly if we have a first-degree relative with ovarian cancer, or a known history of one of the genes that increases risk of ovarian cancer (BRCA1 or BRCA2). There are no data to suggest that ovarian cancer risk is increased, decreased, or unchanged in trans and gender nonconforming masculine-spectrum people who still have their ovaries. This does not mean that there is not a difference. However, because of the size of the transgender community, limits of statistics and medical research, and the infrequency of this cancer, it is not possible to answer this question. When thinking about risks and benefits of surgery to remove the ovaries, it is still reasonable to consider the average risk that cisgender women have.
The most common initial symptom of endometrial cancer is vaginal bleeding. Most bleeding in transgender men is not from cancer. However, if you have bleeding after a period of a year on testosterone without bleeding or after the age of natural menopause if you are not on testosterone, see your provider to have this evaluated. The provider may order an ultrasound or perform a biopsy in the office or refer you to a gynecologist for this office procedure. If you have difficulty with exams, the provider may be able to arrange for sedation.
Screening for prostate and testicular cancers is unfortunately not very effective in individuals of average risk. The United States Preventative Services Taskforce (USPSTF) recommends against routine testicular cancer screening in people assigned male at birth (US Preventive Services, 2004). The reasoning is that this cancer is rare, generally found by patients without performing an actual exam, and even when it has spread from the testicles it is usually very treatable. Therefore, screening has not been shown to prevent death from this cancer. However, screening might find noncancerous lesions, thereby causing the patient undue stress and potentially leading to unnecessary additional testing and surgery that could be harmful. Because the risks outweigh the benefits, the USPSTF recommends against routine screening.
Screening for prostate cancer is also not strongly recommended even for people of the age most likely to benefit from this screening (Fifty to Seventy five years old). In those who are not at higher risk, the harms of screening may outweigh the benefits. This is because the tests for prostate cancer, including the prostate-specific antigen (PSA) blood test and the digital rectal exam (feeling the prostate by inserting a finger into the rectum), may not detect cancer early, and they may be positive even if no cancer exists. Even if the tests were more accurate, not all prostate cancer is life-threatening: Some prostate cancers grow so slowly that most people die with them rather than from them.
Estrogen therapy can falsely lower PSA even if cancer is present, so the PSA screening test performs even more poorly in trans women than in cis men (Makadon et al., 2007). Those of us who have a high risk of prostate cancer (people of African descent or those of us with a family or personal history, for example) may benefit from screening, but this is a decision that we should make in partnership with our health care providers. In other words, our providers might recommend this screening even though it is an imperfect test, and we can always ask our providers why they believe this test is appropriate.
In almost all cases, vaginoplasty does not involve removal of the prostate. This is because removal can be a more dangerous surgery and could result in chronic problems with incontinence (leaking of urine). It is therefore important that our health care providers know about the presence of the prostate, regardless of whether we pursue vaginoplasty or other surgical procedures. Even if the physician performing an examination cannot tell whether we are cisgender or transgender, it is important to disclose this information so that our medical care is most effective. Screenings and guidelines are based on body parts and internal organs present, not on gender identity.
If a prostate exam is performed on a trans woman who has had vaginoplasty, a finger inserted into the vagina may offer a better exam than a finger inserted into the rectum because the prostate sits on top of the vagina instead of directly on top of the rectum. Providers may perform this exam in a manner similar to a gynecologic exam for cisgender women: lying with stomach facing up, with feet in adjustable brackets (“stirrups”), and knees spread slightly apart.
In addition to the care that is provided at a primary care office, we may need care at other locations such as a hospital, radiology center, emergency department (ER), or at a specialist’s office. There are several things we can do to help ensure we get the care we need without worrying about meeting unfriendly people or being in an unsafe space. An important first step is to enlist our primary care provider’s help: A call from a PCP to a specialist or the staff can smooth the process. If treatment like surgery or a planned hospitalization is involved, it is often possible to tour the facility in advance. If a tour would be helpful, calling the facility well ahead of the planned care is a good idea.
Unscheduled health care can be provided in a PCP’s office, but it is sometimes provided in ERs or urgent care settings where we may not know any of the health care providers. This can be scary for anyone whose status could potentially subject them to discrimination and harassment. This is especially true for us as transgender people because our bodies and identities do not necessarily fit within the typical medical binary of sex and gender (Polly & Nicole, 2011; Schaffer, 2005). However, it is important to take our health care needs seriously even if that means a trip to the local ER. While this may seem daunting, there are things we can do that will help us have a safe and comfortable visit.
One of the most important things we can do when we go to the ER is bring a friend who can advocate for us. (This is true for everyone, not just transgender people.) It is important to choose this friend wisely: This should be someone we trust to be with us in vulnerable situations such as after taking medicines that may have a sedating effect. This person should also be someone level-headed enough to be a good advocate if the situation escalates and becomes challenging. Finally, this person should ideally be someone who is able to drive us home after the visit or escort us in a train, bus, or taxi.
Many health providers in ERs genuinely want to help everyone who comes in. However, it is sometimes hard to do this when crucial pieces of information are missing. So it is important that we make sure we either have the following written down or are able to state it reliably and completely:
1. All medications we take as well as doses and frequency, including over-the-counter medicines and supplements
2. Any allergies we have (to medications, foods, latex, etc.), including the reactions we have had
3. Our complete medical and surgical histories, including hospitalizations and any important tests performed relating to current or past medical problems
4. A copy of our insurance information, if we have insurance
5. Names and contact information for our emergency contacts (who we would like contacted in case of emergency), our primary care provider, and our health care proxy (surrogate medical decision maker), if we have one
6. If our emergency concern is related to a surgical issue, the treating surgeon’s contact information
7. A copy of an advanced health care directive or durable health care power of attorney, if we have one
8. If the emergency concern is related to transgender care, a few resources to provide in case the treatment provider has not had experience with such care
When we first arrive in the ER, we will be triaged by a nurse who determines chief concerns and does a brief history and exam, including checking vital signs, such as heart rate and blood pressure. Triage means “to sort,” so the nurse is sorting us into a category based on level of illness. Generally ERs see people in the order in which they come, but people who are sicker (or who have a higher potential to deteriorate quickly) are bumped to the front of the line. This can mean that if we have a less serious or more stable issue, we may be passed over for other people. This can sometimes seem arbitrary, but often people do not look as sick as they are found to be in triage.
If a problem arises in the ER, we can talk to someone to see whether it can be addressed. However, it is important to realize that while some problems may be resolved, some may not. We can start by asking the nurse caring for us (or the triage nurse if we are in a waiting room). Our advocate can help with this. If the new problem is not an emergency, we may need to wait a short time before the nurse can talk with us; that is, a triage nurse may have to triage a new patient before they can address our issue. If the nurse is unable to resolve the problem, we can ask to speak to a patient advocate or a nursing supervisor. Be prepared to wait because these people may have to be called to the ER from another part of the hospital.
When we see the emergency physician, physician’s assistant, or nurse practitioner who will provide care, we should be prepared to answer many questions. These may be questions we do not expect but are important for our care. For example, if a transgender man comes to the ER with a possible concussion, it may not immediately be clear why it is important to know whether he has had a hysterectomy. However, the provider may be asking that to determine whether a pregnancy test is required before performing a head computed tomography, or CT (a scan that detects acute changes in the skull and brain, such as bleeding, swelling, or bone trauma), due to risk of radiation exposure to a fetus. In addition, the question “Have you had any surgeries?” is asked of everyone when taking a complete history. However, this question does not just refer to gender-affirming surgeries, but all surgeries, for example, whether a person has had an appendectomy. Residents (physicians in training) and medical students also frequently ask more questions than more senior physicians, because as part of their training they are expected to gather more information about patients. If we think a question may not be appropriate, it is always OK to ask why it is relevant to our care.
“In 1997, two years after [male-to-female] SRS, I had to have a serious kidney operation at [a major academic medical center in New York City]. They put me in a private room (when I was covered for semi-private) and gave me a wristband that said ‘M.’ The doctor was great. . . but he had a coterie of students who followed him around taking notes and asking questions. I was asked to sit up with my legs spread and a bunch of tubes going up my vaginal area to bladder and kidneys while the students discussed ‘his’ condition and referred to me as ‘Mr.’ There must have been some cognitive dissonance about this because after about 3 days a nurse came in and cut the bracelet off and put on a new bracelet which said ‘F.’ It was one of the few times in my life I was glad to get an ‘F’ on something. The operation was a success, so pronouns were really not critical, but the medical obliviousness made me uncomfortable.”
In general, while we may be apprehensive about unscheduled care in an ER, assuming the best but being prepared for problems is a good plan. Unpleasant experiences may be due to discrimination, but they may also be due to lack of knowledge, poor communication, or simply a busy ER. Being prepared for people to succeed when given a second chance makes it more likely we will have a positive experience in the end.
The Philadelphia Transgender Health Conference takes place every June and welcomes everyone. There are special professional tracks for lawyers, general health providers, and mental health providers.
Our sexual health is a crucial aspect of our overall health. Sexual health includes prevention and early diagnosis of STIs, as well as contraception when needed. It also includes screening for conditions that might impair sexual function.
Just like general health, sexual health is a positive state of soundness, strength, and stability, not simply a lack of illness. Sexual health includes physical, emotional, mental, and social well-being with respect to sexuality. Good sexual health requires an approach to sexuality and sexual relationships that is respectful of ourselves and our partners. One implication of this approach is that we try to ensure a safe sexual experience for everyone involved, without coercion, discrimination, or violence.
Although we emphasize the positive components of sexual health, is important to remember that sexual health is also connected to freedom from disease and dysfunction, including STIs and impairment of body parts involved in our sexual experiences. Consider these examples:
1. A transgender man who wants to enjoy vaginal penetration but has pain that prevents him from doing so
2. A transgender woman who wants to maintain an erection but is unable to as a side effect of hormone therapy
3. A transgender man who wants to enjoy stimulation of his nipples but has lost erotic sensation as a complication of chest surgery
4. A genderqueer person who has less interest in sex because of side effects of a medicine they take
When we have issues such as these with our sexual health, it can be important to seek out help. This can come from our primary health care providers, but sex therapists, mental health providers, and members of our communities who have experienced similar issues can also be valuable resources.
Sometimes we may have more difficulty communicating about and negotiating for safer sex than cisgender people. We may feel less empowered to assert boundaries around our sexual safety, or be more invested in engaging in certain sexual activities as gender-affirming behaviors (Sevelius, 2010). Bias and stigma are also associated with an increased risk of engaging in unsafe sex practices (Herbst et al., 2008; Nemoto et al., 2004).
Communication about safer sex helps to reduce the chances of acquiring and transmitting an STI. Just as gender can exist on a spectrum, safer sex can, too. Some activities are very safe, some are very risky, and some are in between.
The relative safety of an activity depends on the activity but also what things we do to decrease risk. For example, with respect to HIV transmission, anal sex without a condom is about three times riskier for the receptive partner (“bottom”) as it is for the insertive partner (“top”). However, anal sex with proper condom use is three times less risky for the receptive partner than anal sex without a condom is for the insertive partner (NAM, 2013).
To decrease our risk, we may use barriers, avoid use of alcohol or drugs during sex, engage in open and honest communication, and possibly take antiretroviral medicines before or after sex to prevent transmission of HIV (called pre-exposure prophylaxis [PrEP] or post-exposure prophylaxis [PEP]) (CDC, 2012). Barriers can include latex condoms, so-called female condoms, and latex dental dams. The female condom currently available (FC-2) has that name because it can be used by cisgender women during vaginal penetration. However, the FC-2 can also be used by anyone who is having vaginal or anal intercourse regardless of gender identity (Planned Parenthood, 2013). One advantage is that it can be inserted prior to sex, giving the receptive partner control over protecting their health.
Condoms and other barriers are one of the most important ways to protect ourselves from STIs. When using latex condoms (or any other latex barrier), it is very important to use only water-based lubricants. Oil-based lubricants or vaseline can break down latex and make them ineffective against the transmission of HIV and STIs.
Sexual health is a positive state of balance and includes physical, emotional, mental, and social wellness. A pleasurable and healthy sex life, however we conceptualize it, starts with sexual health. The bottom line is that sex and sexuality can be pleasurable, fun, and important parts of our well-being.
Rye Young is the Director of the Third Wave Fund, an activist youth-led gender justice organization. He is dedicated to social justice philanthropy, gender liberation, and challenging white supremacy and classism.
When I was working at Third Wave Foundation, a gender justice foundation that gives grants to youth-led organizations, one of our grant partners was a group led by people involved in the sex trade. Many of their community members were trans* women of color who were working in the sex trade for economic survival. They reported that when community members tried to access STI and HIV testing at hospitals, they were routinely turned away with no explanation, and sometimes they would be arrested because the hospital staff called the police. In this example, basic reproductive health care was denied because of barriers such as racism, transphobia, and classism.
Reproductive justice means that we cannot separate the struggle for reproductive rights—such as contraception, safe abortion, and comprehensive sex education—from other struggles. Trans* people, like all people, have reproductive health needs, and though the reproductive health needs of trans* people are vast, we are often left out of reproductive health services and rights movements.
While reproductive justice teaches us to look at oppression as a barrier to access, it also means we must look at the flip side of how privilege increases our access to reproductive health and rights. For example, if I sought out HIV and STI testing in the same hospital that turned away trans women, even though I am trans and queer, the fact that I am white, class privileged, and male would make it more likely that I’d receive care. If denied care, I would be safer filing a discrimination complaint, the complaint would be more likely to be taken seriously, and I would not have to wonder whether my complaint would result in my arrest.
It is important for trans* people to fight for reproductive justice because we cannot assume that anyone is going to fight for our liberation and rights if we don’t. Part of being a trans* activist for reproductive justice is making sure that our issues are present in women’s spaces, and that we stand with trans* women if they are pushed out of or treated as inferior within feminist and women’s spaces. We must also make sure that reproductive justice is on the agenda within LGBT movement spaces, and if people ask why, it is because being queer and trans impacts our access to reproductive health care. This work is important because we are important!
Reproductive health care includes the ability to make informed choices about whether and when we would like to have children. This includes two different types of decisions. The first ensures that if we do not want to be pregnant, we can choose from contraceptive options that suit our needs. The second type connects individuals with assistive reproductive techniques and technologies that can improve chances of a successful pregnancy. Every technique or method of assisting people with reproductive health has benefits, risks, and varying success rates.
In some ways these techniques are not very different for transgender people than for cisgender people. Condoms are condoms regardless of gender identity. However, the special needs of transgender people and the effect of cross-sex hormone therapy can make certain techniques preferable. As technology advances, even more options for fertility and contraception may become available for transgender people.
One of the most important things to remember is that testosterone is NOT birth control. In some transgender men, testosterone may diminish fertility, but this is not reliable and has not been tested clinically. This is important because testosterone is a United States FDA “Pregnancy Category X” drug. In pregnancy, drugs are classified as A, B, C, D, or X. Drugs in class A and B are commonly used in pregnancy and are generally regarded as reasonably safe. Drugs in class C and D are known or suspected to cause harm to the fetus, but in some circumstances their use may be justified because the condition they treat may be more dangerous than the drug. Category X is reserved for drugs that are known to cause harm and whose use is never justified in pregnancy. In addition to testosterone, finasteride, another drug sometimes used by transgender men to treat balding, is also Category X. Therefore, good contraception is important in transgender men who have sex with cisgender men (TMSM) who choose to have receptive vaginal sex. Contraception in TMSM is also complicated by the fact that unlike cisgender women, transgender men on testosterone often do not menstruate, so pregnancy may be detected later in trans men than it would be in cis women because there is no missed period.
There are many options for cisgender women to prevent pregnancy, and many of these are very reasonable options for transgender men. Barrier methods like the male or female condom are effective at preventing both pregnancy and sexually transmitted infections. If used correctly every time, out of 100 sexually active cisgender women, after one year, two will become pregnant. However, in typical use, this number can be as high as 15 pregnancies. Traditional hormonal contraceptive methods (“the pill”) have not been studied in transgender men, so recommendations for their use are uncertain. However, some reasonable options for transgender men include treatment with progestins like DepoProvera or Implanon. These can be used in trans men who are on testosterone as well as those who are not. In trans men who are not on testosterone, these methods may decrease or eliminate menstruation, which can be a welcome side effect for some people. In addition, intrauterine devices (IUDs) are a highly effective and safe method. Options for IUDs include those with and without hormones. The progesterone in the Mirena IUD decreases ovulation and significantly decreases vaginal bleeding. For trans men who sleep with cis men and need good contraception and who also have residual vaginal bleeding on testosterone, the Mirena IUD may both provide highly effective contraception and help decrease bleeding.
Emergency contraception (the “morning-after pill”) may also be effective, although it has not been tested in transgender men. This medication is now available over the counter to people of all ages and can be taken for up to 72–120 hours after sex (depending on which medicine is used). If you are a trans man and think you may be pregnant, stop taking testosterone (and finasteride) immediately until you have contacted your primary care provider or gynecologist for advice and testing. These medicines should not be restarted until advised by a provider, as they can cause serious harm to a fetus.
Jack Hixson-Vulpe is often very busy and unsure of what he is doing.
As a boy, someone who identifies as not female—I never thought I would have to pee on a stick. The summer of 2010 proved otherwise.
In May 2010, I traveled on a plane to see my partner, and that same month I returned with more luggage than I came with. When I peed on the stick, it took less than two minutes to come out positive; it took me even less time to get my partner on the phone. I cried. He was very supportive. I got off the phone with him and made a phone call to schedule my abortion.
I scheduled an appointment at a “women’s clinic.” The clinic’s materials talked about the busy lives of women who might need to schedule abortions and all the help they were willing to provide for women. This sent the message that in order to go through this process, I needed to be a woman. What would this abortion clinic do if someone called and wanted to make an appointment for a pregnant person named Jack? A boy couldn’t walk into this women’s clinic. I felt I had no option but to become a woman for that two-hour stretch; so I used my legal name, the name that was given to me as a little girl, to book the appointment.
I got off the phone realizing that there was no possible way I could go through this and be a boy. How are boys supposed to get abortions? I wasn’t supposed to be able to get pregnant.
I sat in a waiting room littered with fashion and gossip magazines. A woman sat down next to me and flipped through a magazine. I started a conversation; my hairy legs and short hair made me feel conspicuous, and I needed to get out of my own head. She talked to me about how she had done this before. I am pretty sure she could tell how nervous I was, and she told me that everything was going to be okay. At the time I didn’t know how to respond to her words. I wish I could say thank you.
I was called in to see the clinic doctor. They referred to me by my legal name and used female pronouns. They asked when I conceived and how I knew I was pregnant, and they gave me a quick breakdown of the entire procedure. I was handed a light blue nightie with pink pigs all over it, and an overwashed flannel that looked like it should have belonged to a 70-year-old grandmother. Not something that I, as a boy with a baby, should be wearing.
It did end up okay. One of the nurses doing the procedure thought to ask me why I was on T. I told her that I was transitioning, and from that point she never used my name or a single pronoun. Instead, she referred to me as “honey.” I wish I could go back to say thank you.
After the procedure, I lay on a chair completely out of sorts, my stomach aching, feeling nauseous, and watching multiple women slowly walk by me. I had performed my role; I had passed as a woman. I was no longer pregnant. I left the clinic.
I wanted to be okay with the process, but talking to my partner revealed otherwise. I started to look for support material. It was a difficult process, as I had to sift through the pro-life material that masked itself as wishing to help “women” who have gone through abortions. I came across material that wasn’t pro-life and instead talked about some of the feelings I was experiencing, but it was all geared toward women. None of what I read spoke to my experience.
I searched for some reflection of what I had gone through, but all the information I could find pertained to issues that were not important to me. My experience was outside of the “trans experience” and outside of the standard “abortion experience.” I was a boy who got an abortion, and it still sounds like a contradiction to me.
In transgender men who do not desire to retain the ability to produce offspring, surgical sterilization is also a permanent method of birth control. In a tubal ligation (having your “tubes tied”), the fallopian tubes are clamped or blocked, preventing eggs from reaching the uterus. Other options for trans men include a hysterectomy (removal of the uterus) or a hysterosalpingo-oopherectomy (removal of the uterus, fallopian tubes, and ovaries). This may be a part of gender-affirming surgery for some transgender men. Typical methods of surgical sterilization now include laparoscopic procedures, in which instruments and a camera are introduced into the abdomen through a small surgical incision. There are also methods in which the sterilization is performed by entering through the vagina into the uterus and inserting the sterilization device into the fallopian tubes.
Transgender women who retain testicles can potentially produce a pregnancy in a cisgender female or transgender male partner who is fertile. Estrogens and spironolactone may decrease sperm counts and the viability of sperm, but enough may remain to result in a pregnancy. The best nonpermanent contraceptive option currently available for people born with a penis (and who still have a penis and wish to use it during sexual activities) is condoms. In addition to decreasing the risk of impregnating a partner, condoms also decrease the transmission of STIs.
If pregnancy in a partner does occur while a transgender woman is on estrogens and spironolactone, there is no risk of harm to the fetus. However, if you are using finasteride to decrease hair loss, it is very important to keep the drug away from a pregnant partner. Pregnant people should not even touch this medicine during pregnancy.
For transgender women with no desire to produce offspring, there are permanent contraception options. Cisgender men typically have a vasectomy for this purpose, which is a procedure where the vas deferens, the ducts that carry sperm, are cut to prevent sperm from leaving the body. In addition to the typical vasectomy, transgender women can also have an orchiectomy (removal of the testes) even if they do not need or wish to have a vaginoplasty. While this option is not used in cisgender men for contraception, it is a viable option for transgender women and may not be that much more expensive than a vasectomy. There are added benefits to this, including simplifying hormonal regimens and improving the ability to “tuck,” as well as benefits in legal recognition, as this is considered a type of sex-reassignment surgery.
Transgender men may actively seek fertility, either by carrying a baby themselves or donating an egg to be fertilized and implanted in a partner or surrogate. In addition, trans men who are undergoing gender-affirming surgery that involves hysterectomy (removal of the uterus) or oophorectomy (removal of the ovaries) may wish to preserve future options for fertility.
Pregnancy in transgender men who retain the uterus and ovaries is possible. However, transgender men may face issues with fertility. The effect of testosterone on future fertility is not certain, but it is possible that testosterone can reduce or eliminate fertility even after treatment is stopped. If transgender men want to become pregnant, they must be off testosterone for a sufficient period of time for hormone levels to return to a typical female range. In trans men who use topical testosterone, this process may take a relatively short time (days), whereas in trans men who are using injected testosterone, it may take weeks to months. Even after menstruation has restarted, testosterone levels may be too high to become pregnant safely. Transgender men who wish to become pregnant should therefore have testosterone levels tested before attempting fertilization. In addition, a visit to a primary care provider or gynecologist before pregnancy allows for certain prenatal tests and treatments to be performed. Finally, transgender men who are considering pregnancy should start 0.8 mg of folic acid daily, which is recommended by the US Preventative Services Taskforce for people who may become pregnant in order to prevent birth defects (US PSTP, 2009).
There are options for transgender men who wish to preserve fertility for the future, but they can be expensive and are not always successful. The standard technique for decades has been to harvest oocytes (egg cells) after patients are given hormones that induce increased ovulation. These eggs are then fertilized with sperm either from a known or anonymous donor to produce embryos that are subsequently frozen. Over the past decade, freezing unfertilized eggs without sperm (rather than fertilized eggs) has become a more viable option, although it is still considered experimental because eggs alone are harder to freeze and then use for fertilization than they would be if they were part of an embryo (Noyes, Boldt, & Nagy, 2010). Both freezing fertilized embryos and freezing unfertilized eggs generally costs over $10, 000 as well as a yearly fee for as long as the embryos or eggs are preserved. Given this cost, many transgender men opt to preserve their fertility by delaying or avoiding hysterectomy.
Simon Adriane Ellis is a genderqueer certified nurse midwife.
1. Focus on your skills and biases. You are compassionate and dexterous at meeting people where they are at. Keep doing what you do best. And keep an eye on your biases. What if your patient doesn’t identify as a woman? Does that make their experience less authentic?
2. Build trust and offer accommodations. Fear of discrimination presents a huge barrier to care; it is your job to make care accessible by creating trust. Some patients will desire anonymity, in which case you can offer appointments at the beginning or end of the clinic day. If you refer the patient to another provider, make it an LGBTQ-friendly one and offer to call ahead and provide the patient’s background.
3. Keep your wording inclusive and honor patient preferences. Changing the way you speak may seem hard at first, but it can be as easy as simply replacing the word “women” with the word “people.” Include fields on your intake forms for preferred name and pronoun, then make sure your staff respect the patient’s wishes. If you slip up and say the wrong thing, just acknowledge your mistake and move on.
4. Don’t let curiosity get the best of you. Gender-variant people are constantly asked to justify our existence. This is stressful. Maintain your professional integrity and ask only what you need to know in order to provide excellent care.
5. Don’t pass the buck. The urge to refer patients to “someone who has more experience” than you do is strong; often, it is grounded in sincere concern for the client’s well-being. But the truth is that, with very few exceptions, there is no one with more experience. Using compassion and clinical/professional acumen as your guide, you will do an awesome job.
Fertility preservation in transgender women is easier and less expensive compared to transgender men. The process of obtaining semen for preservation is simple and the cost for the initial process and preservation for up to five years is in the range of $2, 000–$3, 000. Sperm can be frozen for longer periods of time, but additional annual costs do apply. For those of us who wish to use this technique, it is extremely important to think about preserving sperm before starting hormonal treatments, as we may become less fertile or theoretically even permanently sterile on hormones.
For those of us who are already on hormones, cessation of hormones for long enough for sperm counts to rise to viable levels is an option in many cases and likely increases the chances of successful insemination of a partner. However, hormone use may reduce fertility, and this may be permanent even if hormones are discontinued. Estrogen may also have the effect of reducing libido, erectile function, and ejaculation.
Health is a positive state of wellness, and includes physical, emotional, mental, spiritual, and social well-being. Despite a history of bias, discrimination, and stigma in our interactions with health care systems, we now have the potential to seek out competent and sensitive providers that support us in all aspects of our health. We can take responsibility for our own general, sexual, and reproductive health, as well as the health of our partners, families, and communities. We still have a long way to go, but the future of transgender health care is bright.
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