Injustice at Every Turn — Part III: Health Care

Scarlet Letter

This is the fourth in a series.  The first two parts of my review of the report Injustice at Every Turn (pdf) were Who we are — by the numbers, Part I: Education, and Part II: Employment.  Today we move on to health care.

Access to health care is a fundamental human right that is regularly denied to transgender and gender non-conforming people.

Transgender and gender non-conforming people frequently experience discrimination when accessing health care, from disrespect and harassment to violence and outright denial of service. Participants in our study reported barriers to care whether seeking preventive medicine, routine and emergency care, or transgender-related services. These realities, combined with widespread provider ignorance about the health needs of transgender and gender non-conforming people, deter them from seeking and receiving quality health care.

The majority of the sample population sought health care through a doctor’s office (60%), while 28% went to health clinics, 4% used the VA and 4% primarily used emergency rooms for care.  Race was a major indicator of ER use:  17% of black respondents and 8% of Latino/a respondents used ERs, as did 10% of the unemployed and 7% of those who had lost their jobs due to bias.  13% of those with less than a high school diploma also used ERs.

Visual conformers and those with the proper identity documentation primarily used doctor’s offices.

19% of the sample reported being refused care altogether due to gender identity or expession.  American Indians reported the highest level of treatment refusal at 36% while Latino/a respondents reported the highest incidence of unequal treatment (32% by doctor or hospital and 19% in both ERs and mental health clinics).  Those who worked in the underground economy suffered refusal-to-treat at a rate of 30% and those on public insurance had a rate of 28%.  Even those who had transitioned had a high rate (25%).

I have been refused emergency room treatment even when delivered to the hospital by ambulance with numerous broken bones and wounds.

24% of transwomen reported having been refused treatment as compared with 20% of transmen.

28% of respondents reported verbal harassment in a doctor’s office, emergency room, or other medical setting.  2% reported having been physically attacked in a doctor’s office.  1% reported being attacked in emergency rooms.

Those most prone to physical assault in a doctor’s office or hospital were those who were undocumented (6%), those in the underground economy (5%), and Asian respondents (4%).

I was forced to have a pelvic exam by a doctor when I went in for a sore throat. The doctor invited others to look at me while he examined me and talked to them about my genitals.

28% of respondents were out to all their medical providers.  18% said they were out to most of their providers.  33% said they were out to some or a few.  21% were out to none.

Personal observation:  not being out to one’s medical providers can be quite hazardous to one’s health, in my opinion.  I may be 16 and a half years post-op, but I still have a prostate…and hiding any surgeries from a doctor just seems to me to be bad form.  But it is understandable:

Unfortunately, our data shows that doctors’ knowledge of a patient’s transgender status increases the likelihood of discrimination and abuse.

23% of those who were out or mostly out to medical providers were denied service altogether as compared to 15% of those who were not out or only partly out.  8% of those who were out or mostly out were harassed in an ambulance or by EMTs,compared to 5% of those who were not out or only partly out.  And those who were out or mostly out were twice as likely as those who were not out or only partly out to be assaulted in a hospital.

Denial of health care by doctors is the most pressing problem for me. Finding doctors that will treat, will prescribe, and will even look at you like a human being rather than a thing has been problematic. Have been denied care by doctors and major hospitals so much that I now use only urgent care physician assistants, and I never reveal my gender history.

50% of respondents have had to teach their medical providers about transgender care.  Those who have had to do so most include FTMs (62%), those who have transitioned (61%) and those on public insurance (56%).

Many of the respondents reported having postponed either preventative care (50%) or necessary treatment when sick or injured (48%) either because they couldn’t afford it or because they feared discrimination and disrespect from providers.  The lack of money was worse for transmen (55%) than transwomen (49%).  Those with private insurance were less likely to postpone care, but still did so at a rate of 37%.  Of course, failing to obtain preventative care is known to lead to poor long-term health.  28% postponed or avoided health care when sick or injured do to the fear of or actual existence of discrimination and disrespect.  33% delayed or did not seek preventative care for the same reason.  Transmen reported this avoidance behavior at a rate 1.7 times that of transwomen.  Of those who were out or mostly out. 29% reported they had delayed care when ill and 33% postponed or avoided preventative care because of discrimination by providers.

Discrimination in the health care system presents major barriers to care for transgender people and yet a majority of our survey participants were able to access some transition-related care, with 75% receiving counseling and 62% obtaining hormones. Genital surgery, on the other hand, remains out of reach for a large majority, despite being desired by most respondents. This is one important reason why legal rights for transgender people must never be determined by surgical status.

Respondents were less likely than the general population to have health insurance, more likely to rely on Medicare or Medicaid, and less likely to be insured by an employer (of course, since we are less likely to be employed).  51% had employer based coverage, compared to 58% of the general public.

Of course, even with insurance coverage, that is not a guarantee that the insurer is going to cover anything…especially if the insurer deems it transition-related.  African-American respondents were the least likely to have health insurance (39% reported private insurance and 30% public).  In the general population, 68% have private insurance and 28% public).

Overall 60% of transpeople in the sample reported having private insurance, 20% pubic insurance and 20% no insurance.  Gender non-conforming people were at slightly higher rates of coverage, with only 17% uninsured.

I saw a doctor in New York and told her how I wanted [chest surgery]. She looked at

me sternly and said, ‘I can’t believe you are wasting my time. Do you know what your problem is? You just want to be a boy. You want to be a boy and that’s never gonna happen so just do yourself a favor and get over it.’ Then she left the room abruptly. I grabbed my things and bolted down the street, feeling like the biggest freak in the world.

Transition-related care:  It has come to my attention that many people don’t get the difference between the words transsexual and transgender.  Transsexual people desire to actually have their bodies transformed into the form associated with the gender they wish to live as, which is a process known as transition.  In order to do so, there is a lot of mental and medical care needed.  Transgender is a word invented to cover not just transsexual people but also those who just wish to live outside of the norms of the gender associated with the sex they were born with.  In some ways transgender is more a political term used to describe a class of people who often disagree with the needs of the group as a whole.  Yes, we have arguments over who is “like us” and who is not, pretty much like many other groups.  Many transsexual people refuse the word transgender as a descriptor because they wish to have the process they traversed acknowledged.  And some even go so far as to refuse the descriptor transsexual once they have finished their journeys, preferring the words men and women as descriptors.

Most survey respondents had accessed or sought some form of transition-related care.  Most sought were counseling and hormone replacement therapy.  On the other hand, the majority reported that they wished some day to have some form of sex-reassignment surgery as well.  But such surgery is expensive and usually not covered by insurance, rendering it inaccessible to most transpeople.

In order to have medical and surgical intervention transpeople are generally required to follow the Standards of Care as published by the World Professional Association for Transgender Health.

My choices for health coverage at my employer all exclude any treatment for transgender issues, even though they cover things like hormones for other people.

Genrally speaking, it is expected that before any life-altering surgical intervention, it is required that the candidate have a letter form a qualified counselor affirming the candidate is adequately prepared for the treatment.  75% of respondents had received counseling related to their gender identity issues.  Another 14% wished to receive it someday, while the remaining 11% were not interested in it.  89% of all those who had medically transitioned had undergone counseling, as had 91% of those who had some form of surgery.

Part of counseling can involve receiving a gender-related mental health diagnosis such as “Gender Identity Disorder.” Many doctors require this diagnosis before providing hormones or surgical treatment, but the diagnosis itself is widely criticized for categorizing naturally occurring gender variance as pathological.

50% of study participants had received a gender-related mental health diagnosis.  68% of transwomen had such a diagnosis as compared to 56% of transmen.  The overall rate for transgender-identified people in the sample was 63% as compared to 11% of gender non-conforming respondents.

62% of respondents had had hormone replacement therapy, with the rate increasing with age (only 47% of those 18-24, as compared to 82% of those in the 65+ category).

Transwomen may elect from a variety of surgeries, including breast augmentation, orchiectomy (removal of testes), vaginoplasty (transformation of the penis into a neo-vagina), and/or facial feminazation surgeries.  Only 21% of respondents had had breast augmentation, although an additional 53% wanted to have it someday.  25% had had an orchiectomy and an additional 61% wished to have one someday.  23% had had a vaginoplasty and an additional 64% wished to have one someday.  17% reported having facial feminization surgery, which generally is a series of surgeries, involving a variety of techniques, such as reduction of the brow ridge, removal of the adams apple, and perhaps nose and jaw work.  It is impossible to know exactly how many more would utilize such service if it were financially accessible.

I cannot afford gender reassignment surgery which is crucial to my mental well being and thoughts of suicide are always present.

Transgender men also may wish a variety of surgeries, including chest reconstruction (43% already had had and another 50% wanted it some day), hysterectomy (21% and 58%), metoidioplasty (release of the clitoris) (4% and 53%), phallosplasty (2% and 27%) and other genital surgeries.  It should be noted that FTM genital surgeries are much more expensive than MTF genital surgeries…and FTMs generally earn less than MTFs).

26% of respondents had been assaulted in either an educational setting, in interactions with police or family, at a homeless shelter, accessing a public accommodation, or in prison.  10% had been sexually assaulted in like circumstances.  Respondents reported a rate of being HIV+ of 2.64%, over 4 times the national rate of 0.6%.  The rates were higher for people of color:  24.9% for African Americans (2.4% for allAfrican Americans nationwide), 10.92% for Latinos/as (0.8% for all Latinos/as) , 7.04% for American Indians, and 3.70% for Asian-Americans (0.1% for Asian-Americans nationwide).  62% of those who were HIV+ had done sex work for income.  Indeed 15.3% of those who had done sex work were HIV+.  8% of respondents did not know their HIV status, equally divided among transmen and transwomen (both at 8%), while gender non-conforming people were at 9%.  Not knowing correlated highly with low income and low educational attainment.  Least likely to know their HIV status were Asian-Americans, at 13%.

30% of respondents reported smoking daily or occasionally, compared with 20.6% of American adults.  70% of the respondent smokers reported that they would like to quit.

41% of respondents reported that they had ever attempted suicide.  That compared with 1.6% of the general population.

The National Institute for Mental Health (NIMH) reports that most suicide attempts are signs of extreme distress, with risk factors including precipitating events such as job loss, economic crises, and loss of functioning.  Given that respondents in this study reported loss in nearly every major life area, from employment to housing to family life, the suicide statistics reported here cry out for further research on the connection between the consequences of bias in the lives of transgender and gender non-conforming people and suicide attempts.

The NIMH also reports that generally blacks, Latinos/as and Asians are less likely than whites to attempt suicide,but the sample revealed diametrically opposed data.  56% of American Indians, 45% of blacks, 44% of Latinos/as, 39% of Asians, and 36% of whites reported having attempted suicide.

60% of those who had worked in the underground economy had attempted suicide and 55% of those who had lost a job due to bias had done so.  51% of the unemployed handmade an attempt, as well as 37% of those who were employed.

Over half of those bullied, harassed, assaulted, or expelled due to bias in school attempt suicide.

The suicide attempt rate was dramatically higher if the perpetrator was a teacher (59%).  61% of those who who had survived physically assault attempted suicide, as had 64% of sexual assault survivors.

The data gathered here speak to a compelling need to examine the connection between multiple incidences of discrimination, harassment and abuse faced by our respondents in the health care system and the high risk for poor health outcomes. Additionally, our data suggest that discriminatory events are commonplace in the daily lives of transgender people and that this has a cumulative impact-from losing a job because of bias to losing health insurance; from experiencing health provider abuse to avoiding health care; from long-term unemployment to turning to work on the streets.

Recommendations:

• Anti-transgender bias in the medical profession and U.S. health care system has catastrophic consequences for transgender and gender non-conforming people. This study is a call to action for the medical profession:
• The medical establishment should fully integrate transgender-sensitive care into its professional standards, and this must be part of a broader commitment to cultural competency around race, class, and age
• Doctors and other health care providers who harass, assault, or discriminate against transgender and gender non- conforming patients should be disciplined and held accountable according to the standards of their professions.
• Public and private insurance systems should cover transgender-related care; it is urgently needed and is essential to basic health care for transgender people.
• Ending violence against transgender people should be a public health priority, because of the direct and indirect negative effect it has on both victims and on the health care system that must treat them.
• Medical providers and policy makers should never base equal and respectful treatment and the attainment of appropriate government-issued identity documents on:
• Whether an individual has obtained surgery, given that surgeries are financially inaccessible for large majorities of transgender people because they are rarely covered by either public or private insurance
• Whether an individual is able to afford or attain proof of citizenship or legal residency.
• Rates of HIV infection, attempted suicide, drug and alcohol abuse, and smoking among transgender and gender non-conforming people speak to the overwhelming need forM
• Transgender-sensitive health education, health care, and recovery programs
• Transgender-specific prevention programs.
• Additional data about the health outcomes of transgender and gender non-conforming people is urgently needed:
• Health studies and other surveys need to include gender identity as a demographic category
• Information about health risks, outcomes and needs must be sought specifically about transgender populations
• Transgender people should not be put in categories such as “men who have sex with men” (MSM) as transgender women consistently are and transgender men sometimes are. Separate categories should be created for transgender women and transgender men so HIV rates and other sexual health issues can be accurately tracked and researched