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Trans Patients Face Multiple Barriers to Laboratory Testing, Medical Care


NEW YORK – When Emmett Patterson became pregnant in 2014, he didn't know where to turn.

Patterson, a transgender man, had never received birth control information for trans men from healthcare providers throughout his transition, and was effectively using testosterone as a form of birth control. After he became pregnant unintentionally, he was reluctant to seek medical care due to previous discrimination from healthcare providers due to his gender identity.

But once he began having severe pelvic bleeding, he went to an emergency room — one with a laboratory that denied him a confirmatory pregnancy test and providers who violated his privacy, he said.

The lab refused to perform a pregnancy test because Patterson's gender identity was male in its electronic medical record, despite him telling the staff he was pregnant. He was subject to "invasive questions" and "poking and prodding" from his providers, and medical students were invited into his room to observe without his consent.

Patterson, now a trans healthcare activist, learned that the bleeding had been a miscarriage, and the "stress and trauma" of his experience made him "lose all faith in the healthcare system," he said.

Patterson's story isn't unique — according to the 2015 US Transgender Survey (USTS), 33 percent of respondents seen by a healthcare provider said they had a negative experience, such as verbal harassment or refusal of treatment because of gender identity.

In addition, 23 percent said they declined to seek care when they needed to in the year before the survey because of fear of mistreatment, and 19 percent were denied care. Twenty-eight percent rarely sought healthcare because of the fear of discrimination.

In the area of lab testing, similar complaints abound, and trans patients said they've experienced a variety of issues when attempting to get necessary tests — largely due to major structural barriers in the healthcare system, according to laboratory stakeholders, starting with just basic information about the patients' gender and/or sex.

EMRs and Laboratory Information Management Systems, or LIMS, often aren't equipped to handle differences between a patient's gender and sex, and if they do, many insurers will deny coverage to patients who have a test that doesn't match their gender marker.

Trouble determining which reference intervals to use for trans patients and the subsequent difficulties in interpreting those results can leave trans patients dissatisfied or untreated.

Khushbu Patel, director of clinical chemistry at Children's Hospital of Philadelphia (CHOP), said that there are limits within certain EMRs that affect what tests or procedures can be ordered on trans patients.

While some systems can capture multiple fields related to someone's gender identity and sex assigned at birth, others don't allow for a difference between the two, limiting the option for providers to order a test that doesn't match a patient's sex — such as Patterson's pregnancy test or a prostate cancer test for a trans woman.

The issue is even more complicated when someone is nonbinary because most systems don't have a way to include a gender other than male or female, Patel said.

However, Epic Systems, a major provider of EMRs, does have an option for legal sex, sex assigned at birth, and gender identity to be stored separately for all patients, and fields for preferred names and pronouns are standard across Epic's products, the company said on its website.

Because data interfaces between labs and EMRs aren’t always seamless, it can be difficult for a laboratorian to track whether a patient is trans and identify potential issues with test ordering, Patel said. And many EMRs and LIMS aren't from the same provider, making it even more difficult to ensure standardization, she said.

Standardization across EMRs and LIMS is a key component to ensuring trans patients get the care they need, as is recognition of the problem, Patel said. There needs to be a "large-scale collaboration" between hospitals and manufacturers to include more comprehensive gender and sex options in information technology systems, she said.

Necessary information is often "buried or hidden" in an EMR, said Scott Nass, president of GLMA: Health Professionals Advancing LGBTQ Equality, an international organization for the advancement of LGBTQ health, and medical director at telemedicine company MedZed. A person's gender identity is "not just presented as standard demographics" in these systems, making it difficult for a provider to know if a patient is trans and counsel them appropriately, he said.

Having an "active gender marker" in EMRs, one that flags whether a patient is trans and clarifies that there is a difference between the patient's gender identity and sex, would allow providers and laboratorians to easily see that a patient is trans and order the correct tests, he said.

Individual systems have worked around this, flagging certain patients as transgender, but Nass echoed Patel's opinion that widespread standardization and adoption of more inclusive gender and sex fields would go a long way in advancing trans care.

"It's something important for every system to think about, even if they don't think they have transgender folks … who are coming into their system," Nass said.

In Patterson's view, automated hospital protocols "can't see the nuance" in someone's gender identity. Those protocols, as well as artificial intelligence tools used in labs, reflect interpersonal biases against trans people and are "reinforcing this idea that this type of test is only for this person with this gender marker," he said.

Ensuring appropriate healthcare while working within these flawed systems "requires [an] understanding of what trans folks need" and the "humility to question that system," he added.

"When you base lab protocol on something that's as fluid as gender and you only offer two options … you're not actually providing quality care," he said. "You're completely ignoring the reality of my body."

'My very self was inconvenient'

Trans patients seeking medical care encounter additional roadblocks aside from a provider's IT system. For example, insurance claims for tests performed on trans patients are often denied due to mismatches in gender identity and sex, and some labs will refuse to test patients if they know the claim will be denied.

According to the USTS, between 2014 and 2015, the period covered in its survey, 1 in 4 respondents reported having problems with their insurance related to being transgender, such as being denied coverage for care related to gender transition.

Seventeen percent had an insurer refuse to change their name or gender in their insurance record when asked, 13 percent had coverage denied for services deemed gender-specific, and 7 percent said they were denied coverage for other routine healthcare.

Asa Radix, an infectious disease specialist at New York-based Callen-Lorde Community Health Center and an adjunct professor in the department of epidemiology at Columbia University, emphasized that insurance denials are often automatic because claims programs are automated to match gender identity and sex.

Radix said the issue "is fixable," but it means the provider has to "get on the phone" with the payor and explain what's going on to get the claim manually amended. While it may "seem minor," dealing with insurers for every test or procedure "wears you down," Radix added.

"It causes people to just want to avoid healthcare," Radix said.

Patterson said that one of the reasons the emergency room lab declined to perform a pregnancy test is it couldn't bill for the test correctly, since he was listed as male in the LIMS and EMR and in his identification documents.

"It just felt like … my very self was inconvenient," he said.

Receiving denials from insurers for routine tests puts the burden on trans patients and their providers to figure out how to get a test paid for, Patterson said. Despite his proficiency in navigating the healthcare system, he said he still has to call labs and insurers on the phone to double-check claims and explain why they're appropriate.

There can also be confusion surrounding legal documents, such as when a patient has changed their sex marker on legal documents but hasn't updated their gender identity with their insurance, or vice versa, Patterson said.

"There's not one single pillar of documentation in the US," he said, and these contradictions have created "a system of confusion and chaos."

Patterson has faced denials for pelvic exams, birth control, and preventive ovarian and cervical cancer screenings, and the "very simplistic binary" in healthcare ignores that "all sorts of folks, not just trans folks, have variations in their bodies," he said.

"People's actual bodies and healthcare needs aren't taken into account," he said.

A spokesperson for United Healthcare said via email that the insurer has no reviews based on gender that would impact payment of claims, while a representative from Cigna said it removed any requirement for a specific gender marker to access lab testing years ago. 

Representatives from Aetna, Anthem, and America's Health Insurance Plans did not respond to requests for comment.

What is 'normal'?

Many of these problems radiate throughout the health system beyond just laboratories, but there are also lab-specific issues — namely those related to test reference ranges and the interpretation of test results.

In a study published in Laboratory Medicine in 2016, researchers looked at the challenges faced by trans patients and found that "the lack of a standardized definition of 'normal' laboratory values" is a significant difficulty for laboratory staff when reporting results.

"The interpretation of laboratory data in transgender patients is especially complicated for laboratory tests that have sex-specific reference ranges, such as tests for liver enzyme, creatinine, and hematocrit levels," the researchers wrote.

Mark Marzinke, director of general chemistry at Johns Hopkins Hospital, noted that there is little guidance on how labs should report reference ranges for someone on gender-affirming hormone therapy, or GAHT. There are "a variety of changes" that occur when a patient goes on hormones, including differences in hematologic markers, creatinine clearance, platelet counts, and glomerular filtration rates.

In addition, some patients use GAHT intermittently, which can cause differences in hormone levels from visit to visit, he said.

"There's a lot of heterogeneity in terms of hormonal therapy," he said. "It really has to do with the type of therapy you're on and the duration of the therapy."

In a paper published by Marzinke and Radix in 2020 in the Journal of Applied Laboratory Medicine, they noted that it "may be more beneficial to utilize target ranges for certain laboratory assessments that are contextualized by a specific hormonal regimen," rather than relying on gender-based ranges.

For the microbiology lab, there are also considerations when collecting genital specimens or urine samples to make sure the right sample has been taken and the appropriate results are reported. And in anatomic pathology labs, assessment of Pap smears and prostate or breast biopsies is often susceptible to misinterpretation in trans patients.

Patterson said he has faced issues with testing for sexually transmitted infections, including a laboratory that threw out his vaginal swab three separate times because it assumed the swab wasn't right, since his gender was male.

Interpreting results from any lab falls on the provider, who must also be aware of which reference ranges to use and how to explain them to the client. It's a "shared responsibility," Marzinke said, wherein the laboratory must "use logic" to determine which intervals to use and the provider must confirm those intervals are appropriate.

Marzinke emphasized that there have been "huge strides over the last decade" in trans healthcare, but that a major challenge is a lab "having appropriate resources." Most labs are "doing more with less," and that leads to a "natural prioritization," which may not include updating guidance and reference ranges for trans patients, he noted.

But increased advocacy that highlights the "issues and implications" of not providing such relevant information to trans patients can help convince labs to be quicker on the uptake, he said.

Patel, the CHOP laboratorian, said that the lack of established reference intervals specific to trans patients and their genders hinders labs in their reporting. "We still don't have a complete understanding" of how GAHT impacts certain biological markers, and its dependent not only on the treatment regime but a patient's adherence to it and other factors, she said.

"It's hard to know which reference interval to report," especially when a lab tech sees a mismatch between gender and the test ordered, she said. And when a lab doesn't know what medications a person is on, determining the appropriate interval is even harder, since the specific interval might depend on the patient's treatment plan, she added.

Her lab's solution, and what she's seen most other labs do, is to include reference intervals for all genders on a report and allow the provider to interpret which is appropriate for the patient.

"Right now, there's not a lot of consensus on how to do this," she said. "We need guidance before laboratories can fix it."

That guidance should come from professional societies, Patel said.

While the American Association for Clinical Chemistry has had abstracts presented at its Annual Scientific Meeting about testing for trans patients, the organization itself hasn't issued recommendations or guidance for lab testing for trans patients, a spokesperson said.

The American Clinical Laboratory Association hasn't released guidance on the issues either, and a spokesperson for the Association for Molecular Pathology said any questions about recommendations for trans testing should be directed to AACC.

Some studies have been published that lay out appropriate reference ranges for trans patients regarding certain tests or analytes, including two in the Journal of Applied Laboratory Medicine published last year, but more widespread studies have been slow to come.

Ultimately, Patterson said, there are both structural and interpersonal issues at play when trans patients seek medical care, encompassing personal biases and a lack of thought for the differences in trans bodies compared to cisgender patients. But the problem isn't on one person, he said.

"It's the fault of systems and the people that have created them," he said.