Rose, who asked us not to use her full name, is, like a lot of trans people, no stranger to having the medical profession fail in its service to her. She initially came out as trans at the age of 16 to her mom, who insisted that Rose discuss her gender identity with the therapist she had been seeing for her depression. It did not go well.
“His was just mind-blowing incompetence, spoken like he knew everything,” she says. “He told me no one would treat me for being trans at 16, and that I should just wait until I was 30 or 40. He refused to talk about it and said no one else would be willing to talk about it with me either. Which is profoundly untrue, especially considering that he himself admitted he didn’t know much about trans people. This is a recurring theme with me. Doctors admitting they don’t know, and proceeding as if they did.”
After her first suicide attempt, in 2012 — trans people are nine times more likely to attempt suicide than the general population — and during her committal, she experienced even more discrimination while an inpatient. Her memories from the period are fuzzy. By her own account, she was heavily dosed with Prozac, and has, understandably, worked to put a lot of what she went through behind her, but details stand out.
“I told them I had come in for my gender dysphoria [mental distress over the gender a person is assigned at birth], and that I felt my transition wasn’t going well, and how it made me feel hopeless,” says Rose. “They refused to treat it or acknowledge it. The more I talked about it, the more they pushed back. They found ways to make sure I couldn’t shave my face by always scheduling doctor visits during the 30-minute window we were allowed to shave.”
Ultimately, Rose found more solidarity with her fellow patients, many of whom encouraged her to continue her transition and hope for a better life. She credits them with whatever progress she made during her visit.
At her exit interview, her doctor continued to use Rose’s birth name and male pronouns, according to her. He told Rose that he believed she was a paranoid schizophrenic whose belief that she was a woman was a delusion of grandeur, especially since she seemed to think that she would suffer some sort of persecution as a woman. Rose doesn’t remember his name, but she does remember the last thing he said to her.
“If it were up to me, I’d hold you here until you gave it up.”
When we reached out to Methodist about this story, the hospital’s spokeswoman, Stefanie Asin, said she was unable to comment on Rose’s particular case owing to a lack of details and privacy concerns, but assured us that the treatment scenario described by Rose was not in keeping with Methodist’s practices.
“We do not discriminate here. We actually perform female-to-male gender reassignment surgery here. I think the most likely outcome would be a patient getting the care they need.”
That may be the goal, but trans discrimination remains a significant problem within the medical community. Rose’s case may be an extreme one, but incidents of discrimination and ignorance in care are not at all hard to come by in trans circles. A study of 7,000 participants undertaken in 2010 by the National Center of Transgender Equality and the National Gay and Lesbian Task Force found that 28 percent of transgender and gender-nonconforming people have delayed or avoided seeking medical care for fear of discrimination. Another 19 percent reported having been flat out refused care, and that number goes up when accounting for people of color among the pool. Another 2 percent reported outright violence that had been inflicted on them in a medical setting.
At least one physician, Robert J. Winn, based in Philadelphia and a writer for American Medical News, has said some patients will travel 500 miles to see a doctor like him who is comfortable with and sensitive to LGBT patients. Even in Houston, one of the most diverse and medically prestigious cities in America, trans people say they struggle to find doctors who will treat them without prejudice.
Like Rose, she came out as trans at a young age to a therapist unequipped to deal with the issue. She was in seventh grade; her therapist told her nothing was wrong and that she should get over it.
By 2012, she had begun hormone replacement therapy to start her transition. This generally involves doses of three hormones for trans women — estrogen, progesterone and spironolactone. HRT is also used to treat women suffering the effects of menopause. It’s not particularly complicated medicine, but getting hormones is not as easy as it might appear to be. The old standard of care in transitioning required six months to a year of therapy before a doctor would prescribe HRT, and some doctors also required trans people to live as their preferred gender without any medical aid to help them pass.
Juliet went to a doctor for her hormones, the only one she could find who would prescribe just on informed consent, meaning she only had to assert and sign a paper showing she understood what she was going to do to her body and was aware of HRT’s possible risks. The World Professional Association for Transgender Health’s standards of care were revised in 2011 to include the informed-consent model, but many doctors still require a small library of forms and diagnoses before they’ll agree to treat trans patients.
While that doctor has a good reputation among the trans Houstonians we spoke to, Juliet’s account of her initial visit is darker. She says she told him that she was experiencing severe cramping, to which he joked out loud to some nearby colleagues, “What? You think you’re growing ovaries?”
From there he referred her to an endocrinologist and a urologist. The office of the first doctor did not return our calls for comment on this story or for help tracking down the names of the other doctors that Juliet saw that day.
“He sent me to another doctor, an endocrinologist, who also then proceeded to completely ignore the symptoms and give me an unnecessary breast exam, informing me I was doing very well for how far I’ve been on [hormones],” she says. “From him I went to the urologist, who told me he thought that I had prostatitis, and then gave me a rectal exam against my permission. I told him no, and he proceeded to do it anyway.”
The unwanted rectal exam was particularly traumatic for Juliet. She bears scars in that area from a sexual assault she suffered when she was younger.
“Considering that Houston has a reputation for being one of the better cities for trans people as far as the region goes, I was shocked at how openly it was all done,” she says. “Doing an exam on someone, when a patient says, ‘Please don’t do this’ and the doctor does an exam anyway that is painful and makes me bleed, that’s beyond just general ‘I know better than you. I’m a doctor.’”
For a time Juliet lived in Washington State, and a doctor there altered her hormone dosage by halving the estrogen and doubling the spironolactone. After moving back to Houston, she noticed that she was having blood pressure issues. At six feet tall and 140 pounds, she was already prone to hypertension, but now body parts would regularly go numb. Since spironolactone is also prescribed for high blood pressure, Juliet decided she needed to get her hormone prescription restored to the way it had been. She walked to the Kelsey-Seybold clinic downtown.
“When I got there, I told them it was because of a medication I was on and asked for help,” says Juliet. “They flat out told me, ‘I don’t feel comfortable doing anything with this; maybe you should just quit all of it.’ She refused to do any kind of treatment or even discuss it.”
Kelsey-Seybold issued a brief statement regarding Juliet’s story when we contacted the clinic:
“We have no policy on what patients we will/won’t treat. All of our Kelsey-Seybold physicians are encouraged to treat any patient within their trained area of expertise. We do ask that our physicians make appropriate referrals when they believe a patient would benefit from seeing another doctor who is more specialized and trained in treating disparate issues.”
Eventually, Juliet found a doctor at Park Plaza Hospital who would deal with her hormone issues, which was a good thing because within days of her first appointment there, her blood pressure landed her in the hospital for surgery. Her dosage levels were speeding her toward kidney and liver failure. Even in a better place, though, she says, doctors continued to misgender her and call her by her no-longer-legal birth name.
“You have no choice,” she says. “You have to sit there and play nice, or they won’t help.”
Samantha Hack, 36, has also faced both discrimination and medical ignorance since she began her transition. Her health is extremely complicated owing to an unspecified disorder related to Marfan syndrome, a genetic condition that affects the body’s connective tissues. As a result, Hack suffers from migraines, heart problems and aneurysms, and has to monitor her anti-coagulation levels constantly. On top of all that, she’s also had three heart surgeries, a broken back resulting from a seizure, and rheumatoid arthritis. HRT is one part of a very elaborate puzzle in her daily health.
In 2014, she was receiving care through the Harris Health System, and had just recently begun identifying as female. She was transferring to HHS away from a surgeon’s care for neurological problems related to the broken back as she was in mid-transition. Things went sour immediately when she told the hospital that she was looking to get off the Vicodin her previous doctor had her taking and that she needed a referral for a neurologist.
“The response I got was, ‘We do not prescribe that drug,’ and they put in my file that I was seeking drugs when it was the opposite of that,” says Hack. “I’d never really experienced anything like that when I was presenting as male.”
Quentin Mease Community Hospital, which did not respond to a request for comment on this story, did finally get Hack her neurologist, but Hack found her doctor dismissive and transphobic. At that point, Hack was having a migraine virtually every day and was in considerable pain. According to her, the doctor told her she was having ministrokes and needed to stop taking estrogen immediately until an MRI could be scheduled. The next open slot was 31 days away.
“Estrogen does increase the risk of clotting,” says Hack. “However, I am on the highest therapeutic range for anticoagulants. There’s no risk for clotting. That’s why I’m on them. I flat out told her that if I was having ministrokes, I needed to be in the hospital immediately, not going off estrogen for a month while I waited for an MRI. Otherwise there really wasn’t anything going on and I didn’t need to stop my estrogen.”
Hack ended up getting her MRI the next evening, but the results were inconclusive. Her doctor simply repeated her recommendation for stopping the estrogen.
“That was obviously related to my HRT,” says Hack. “If I hadn’t had the knowledge of what medicines I was on…I’m really involved in my medical care. I have a lot more knowledge than most people. I’m not sure someone else would have known to call her bluff.”
Low investment in LGBT health by medical schools is partly to blame for insensitive care. A study published in The Journal of the American Medical Association in 2011 surveyed the deans of medical schools across the United States and Canada. The median time spent on LGBT health issues was just five hours, and the content varied greatly. Of 132 respondents, nine reported no pre-clinical hours spent on trans- or gay-specific medicine, and 44 reported no clinical hours spent on LGBT health. For many, the average trans person is an interesting anomaly rather than a typical patient.
“I went in for a lump on my throat I thought was a swollen lymph node,” says Rose. “I was presenting as a woman, but there was a lot of gawking around my, well, my Adam’s apple. Very unprofessional about it, very difficult to get the records for that procedure. I was experiencing severe heart palpitations. The pain was actually so bad, I had fallen out of a chair, and it was coming every day along with joint pain that had gotten worse over the year. I explained my medications. She gets her laptop out and Googles about them. Her questions were like a schoolgirl on a field trip. ‘How long have you felt this way? When do you start your transition?’ One of her questions was, ‘Is your girlfriend a real woman or is she, you know, like you?’ She Googled my medications and decided they were the cause. She refused to breach anything other than the estrogen. This is a woman who had just asked for my pill bottles so she could look up what the drugs did. It’s just very insulting.”
Dana Louise Hinton, 60, is a long veteran of Houston’s tumultuous oil and gas industry, and currently works for Costello Engineering and Surveying. She is also the lead facilitator of Houston’s longest-running trans support group, Helping Transgenders Anonymously (“transgender” is a term that most trans groups consider outdated and no longer use). Hinton says her employer is supportive of her gender identity, but she remains legally male on all documents and has to use her birth name for most documents. That’s partly because no lawyer in Houston has been able to tell her if changing her name and gender marker will invalidate a power of attorney she currently holds, but it’s also because of quirks in the employee insurance plan that Costello has through Aetna.
“At first we had insurance through Cigna, but I wasn’t eligible because I was still under a 90-day trial contract,” says Hinton. “I was told by HR that they were going to switch to Aetna. When I was formally hired, we had a long talk with the broker. They told me that adding a trans-inclusive rider would cost the company $100,000 annually. They refused, and, to be blunt, I would have as well. I’m not going to pay $100,000 for one employee. I’m not sure I’d pay it for five.”
LGBT people still lag behind other Americans in terms of being able to find insurance, though the problem has decreased significantly since the passage of the Affordable Care Act. As of 2014, LGBT people were 75 percent more likely to be uninsured than the general population, according to one Gallup poll. The latest Human Rights Campaign equality report shows that only 40 percent of Fortune 500 companies offer trans-inclusive benefits.
Hinton says that even if Costello had gotten the rider, it wouldn’t have been much help. Most of the more expensive medical procedures involved in transitioning, such as vaginoplasty, breast implants and facial feminization, were still considered elective under the trans rider, and wouldn’t have been covered by the plan.
“I asked her, ‘If it wasn’t going to be included, what was the point?’” says Hinton. “She couldn’t answer me. She said, ‘It’s just our policy.’”
Hinton did sign up for the employee health insurance, but as a male. This actually makes her even more leery of going through a legal change since the policy doesn’t account for her trans status and will deny claims of trans-specific medical needs.
For instance, Hinton’s policy will pay for her hormone screenings because men get hormone screenings, but it will not pay for her estrogen because men aren’t prescribed estrogen. Likewise, should Hinton change her name and gender marker, and then develop, say, prostate cancer, Aetna will not cover any of the treatments. Aetna’s policy is that women do not have prostates. The same would be true for a trans man who found himself with ovarian cancer.
“I’m literally caught in a catch-22,” says Hinton. “I’m a heck of a lot more at risk to have a problem with my prostate than I am for any female issue. To most insurance companies, I don’t exist; there’s no such thing as transgender people.”
Cynthia Middleton of Alliance Employee Benefits brokered the policy for Costello. She likened the trans rider and policy to any other specialized set of benefits that raises the price of deductibles. For example, if a company wants to cover in vitro fertilization, the policy costs more. Likewise, adding trans care is adding a specialized area of coverage. She doesn’t see that changing any time soon.
“It’s been hectic just keeping up with Obamacare over the last several years,” says Middleton. “I’m sure they’ll get to it eventually. Maybe it has to go through the government to change. The insurance companies have their own agenda.”
The survey, which participants can take online and anonymously through a link on The Montrose Center’s website, is a broad, baseline set of health-related questions that aim to try to get data on what the LGBT community needs in Texas. According to Dr. Ann Robison, executive director of the center, information about the medical needs of LGBT people in the Houston region is terribly out of date.
“We continually get requests from our staff from all over the world because we’re a major LGBT community center, and a lot of the surveys are not written very well,” says Robison. “They’re mostly student projects, and they don’t really benefit us or the community. We got kind of sick of that, so we decided to pair with a reputable institution that we knew would do good research.”
Drs. Vanessa Schick and Mike Wilkerson, both assistant professors in the Division of Management, Policy and Community Health at the UT School of Public Health, are the scientists administering the survey. They plan to share their findings with the community through The Montrose Center.
“When individuals participate in research, they never really get anything out of it,” says Schick. “People in academia publish in some obscure journal the community never sees. They don’t know what we found or how it might impact them. We made sure we have representation from the community and we’ll have a community report. And we’ll put that on the Montrose Center website and directly distribute to the community so they can see what other people are saying and wanting.”
According to the researchers, the majority of studies done on LGBT health have centered on populations in cities on the East and West coasts. They also tend to focus a great deal on the effects of HIV/AIDS. Now that HIV/AIDS is no longer the American epidemic it was decades ago, Schick and Wilkerson are hoping to hear from LGBT people who traditionally haven’t had as much of a voice as city-dwelling HIV patients.
“Our community has become far more dispersed,” says Wilkerson. “People who may live in the outer suburbs, or who might live in Huntsville or Livingston, which isn’t that far from Houston, what do they need? How do they get services if they live outside Harris County?”
Though the survey is broadly about the entire LGBT spectrum, its anonymity is particularly helpful for hearing from trans people, who are currently facing a nationwide backlash. Many who can pass easily as their preferred gender hide their trans status to avoid discrimination, even when seeking treatment.
“The federal government is starting to require health-care providers to collect what we call SOGI — sexual orientation and gender identity information — so that it is in their medical record,” says Robison. “Some people still won’t say.”
“No one knows how many trans people there are because a lot of us, if we can, blend in and manage,” says Hinton. “When you’re a trans man, testosterone is like a magic elixir. Top surgery isn’t cheap, but it’s generally attainable to someone with enough motivation. Or you could always bind. Those trans men disappear until they have to go to the doctor.”
Hack is hoping that some sort of medical database of trans-friendly providers will come from the work The Montrose Center and UTHealth are doing together. Finding doctors for her myriad conditions and troubles is a long and exhausting process not made any easier by worries over discrimination.
“[A database] would be wonderful. Especially for specialists who don’t necessarily treat your hormone therapy,” says Hack. “I have a cardiologist. I have a rheumatologist. I have a neurologist. A psychiatrist. A therapist. Finding someone for every specialty is really, really hard. Access to medical care is a big thing in our community, and for trans people it is something of a failure of the LGBT community that it hasn’t adequately addressed medical care.”
In 2014 the Association of American Medical Colleges released the first-ever national guidelines dedicated to training physicians on the health of people who are LGBT or gender nonconforming or are born with differences of sex development. Writing in the preface, Dr. Kristen Eckstrand said, “This publication offers evidence- and best practices-based recommendations for curricular and climate change with the aim of creating a welcoming and inclusive educational infrastructure within health care that is responsive to the needs of people who are or may be LGBT, gender nonconforming, and/or born with DSD.”
Some state legislatures, however, are more interested in protecting the freedom of doctors to make their own choices about patients. In April, Mississippi passed a law allowing physicians to opt out of caring for patients if they had a religious objection, with the text of the law specifically mentioning gay and trans people.
Juliet finds the atmosphere in Portland better than in Houston, but working with doctors who either don’t know or don’t care for trans people is still a nightmare, just a smaller one.
Rose is set to leave Houston as well; most of her trans friends have already done so. She worries about sharing openly with her therapist, afraid that she’ll end up as an involuntary committal simply for being trans. She says that has already happened to friends of hers who have spoken with their therapists about suicidal thoughts or psychotic episodes.
“I’ve always got this fear in the back of my mind,” she says. “They could do whatever they want to me. House me with the men, withhold my hormones, all kinds of things. It gets scary.”
She has just about stopped going to the doctor for any medical needs. She relies on advice from her family or girlfriend for anything that might need attention, either treating herself or just not getting any treatment at all. She dreads having to find a new estrogen provider, since her old provider is shutting down. She’s applied to see someone at Legacy Community Health Services, which will accept informed consent rather than letters from therapists. There’s a four-month wait because the clinic has too many patients and not enough doctors. She’s about to try her luck somewhere else.
“I really want doctors to look into what these hormones do for us, and go into that without assuming it’s a negative,” says Rose. “Can people just believe us when we’re talking about ourselves? Believe us when we say we’re men or women or neither?”