Rachel E. remembers being at work one day in 2015, when she overheard a co-worker commenting on how their new insurance plan would cover gender-affirming healthcare services for transgender people. Though her co-worker referred to the change cruelly, Rachel doesn’t focus on that part. All she thought to herself was, “This is my path forward.” Rachel is a 60-year-old transgender woman who lives in North Carolina. She recently retired after a long, successful career in the airline industry. But she never felt comfortable in her body and never looked in the mirror. In her early 20s, it had finally clicked that she was a transgender woman, but had been assigned male at birth. At that time, the care she knew she needed was far too expensive and there were a limited number of providers across the country. Fast forward through years of efforts from advocates to make gender-affirming care covered by insurance, and Rachel found not only a therapist to talk to in 2016, but eventually an inclusive primary-care doctor who would prescribe her hormone therapy, and eventually a surgeon who would provide gender confirmation surgery and a host of other services. “It’s like being reborn; I feel free,” Rachel said, adding that she was referred to Novant Health by her therapist. “I consider all of my doctors and my healthcare professional team essential in my becoming the woman I am today.”
““I consider all of my doctors and my healthcare professional team essential into my becoming the woman I am today.” Rachel E.
Coverage leads to access Not that long ago, hormone replacement therapy, gender-affirming surgeries and even basic primary-care visits were out of reach for the estimated 1.4 million transgender adults in the U.S. The Affordable Care Act spurred change, prohibiting most insurance carriers from charging higher rates or denying coverage altogether on the basis of sex. As the ACA was being passed, advocates saw an opportunity to work with insurance carriers and state regulators to remove gender-affirming care exclusions and expand access to coverage. It would take six years for the Obama administration to finalize federal regulations specifying that the ACA included transgender people and prohibiting blanket exclusions for gender-affirming care. “There used to be a lot of blanket exclusions, that insurers wouldn’t cover anything related to gender transition,” said Kellan Baker, executive director of the Whitman-Walker Institute, the research, policy and education arm of Whitman-Walker Health in Washington, D.C. “After the ACA, what we saw was a pretty dramatic drop-off in the use of exclusions, particularly blanket exclusions.” As insurers began to create policies to pay for gender-affirming care, health systems opened programs to a population that historically lacked access to any level of care due to untrained clinicians, discriminatory medical practices and cost-prohibitive services. “We’re now seeing health systems take this on, because they understand that there is a gap and it’s an important, marginalized community that has been long ignored and there’s such a demand,” said Dr. Jesse Ehrenfeld, a senior associate dean at the Medical College of Wisconsin in Milwaukee and an American Medical Association board member. “Now that the coverage landscape has changed, it’s much more feasible for patients to be able to access those services.” The services to aid patients in transition include prescription hormone therapy, mental health counseling, voice therapy and procedures like mastectomies, breast augmentation and genitalia surgeries. There are also basic things a health system can do to make everything from an annual wellness to a cardiology visit accessible.Delays in care Historically, going to the doctor was a mentally painful experience for transgender patients, and it still can be. Rachel recalls going to an urgent care center with a high fever in early 2020, well after she’d transitioned and had legally changed documents like her birth certificate.
How to know if you'll have transgender patients
Creating a business plan for a service line that meets the needs of transgender patients is not as easy as doing one for, say, cardiovascular or asthma patients. That’s due in large part to a dearth of data on this patient population. Health systems historically haven’t asked patients to identify themselves, and neither does the Census. In 2020, the Census Bureau added a checkbox for same-sex couples living in the same household to identify their relationship to each other, but not gender identity. It’s even a problem at the Veterans Affairs Department. Although LGBTQ veterans are at risk of higher rates of depression and thoughts of suicide, the VA doesn’t collect data on gender identity or sexual orientation. In 2020 the Government Accountability Office recommended the VA start asking these identifying questions in a systematic way so patients can be screened for risk, and health disparities can be addressed. In a written response to the GAO report, then-VA Acting Chief of Staff Brooks Tucker said the department was working on improvements in collecting the data as part of its massive electronic health system overhaul. “We still have this data desert around trans individuals and LGBTQ+ patients that unfortunately has limited some of the development of the provision of care in this area,” said American Medical Association board member Dr. Jesse Ehrenfeld. But some systems are starting to ask the question. In 2019, North Carolina-based Novant Health started asking patients via their EHR for this data, which had the added benefit of helping clinicians use the correct pronouns for patients and creating a better care experience. “So rather than a team member using incorrect pronouns, that information is in the medical record, and they can use it. That builds respect and trust between the patient and the caregiver,” said Wendy Renedo, a transcultural health manager at Novant Health. A good place to start providing an inclusive care environment for transgender patients is with training on the World Professional Association for Transgender Health standards of care to find out what kind of care you might be able to provide, and finding providers who are interested in caring for this population. Eventually, providers might hire a medical director for transgender health as the practice grows.
“So there was a question on this form for ‘sex at birth,’ and I’ve always tried to be honest, and I put ‘male,’ but I never saw another box asking, ‘What’s your legal gender?’ ” she explained. “When they printed off the form and in the medical record, it identifies me as male, and not that it was just my sex at birth. That’s when I became upset, because I felt they weren’t a gender-affirming provider.” What was supposed to be a straightforward visit became stressful, and she never went back to that facility. This, and a range of discriminatory attitudes and practices, have resulted in transgender people avoiding care. As a result of that and other factors, transgender people have higher odds of multiple chronic conditions, poor quality of life, and disabilities compared with both cisgender men and women, according to multiple studies. Transgender individuals in the U.S. are also up to three times more likely than the general population to report or be diagnosed with mental health disorders, according to the AMA. “We’d see a lot of delayed presentation, or individuals who just choose not to seek the care that they need,” Ehrenfeld said. “There’s good data out there that suggests LGBTQ patients often are turned away or discriminated against when they try to access care, and were historically denied.”Feeling welcome At 15-hospital system Novant Health, based in Winston-Salem, N.C., a move to inclusivity for transgender patients started back in 2015 when a clinician who’d been prescribing hormone replacement therapy for a few years approached Novant Executive Vice President and Chief Diversity, Inclusion and Equity Officer Tanya Stewart Blackmon about making the electronic health record inclusive. In 2017, Novant formed LGBTQ community focus groups and began creating a template for gender identity and sex-assigned-at-birth options in the EHR. And then in 2019, the system launched the change that allows patients to identify with a gender different from the one assigned at birth. Later that year, training began for all staff members on the basics of what being transgender means, how to use the proper pronouns and health disparities. Novant hasn’t done a breakdown of revenue gains from providing this care, but Blackmon pointed to other data that she said shows transgender patients are bringing their care needs to the system. In 2016, Novant launched a brand tracker that asked people in its market if they preferred and chose the system as their provider. Novant has gone up 10 points among people in the LGBTQ community in preferring and choosing the health system.
ATRIUM HEALTH
Levine Children’s Center for Gender Health at Atrium Health opened in 2019 and was the ! rst clinic of its kind in Charlotte, N.C.
ATRIUM HEALTH
“The business part is that it’s going to increase revenue in your system, and increased growth and retention of people coming to your system,” Blackmon said, adding that the majority of their transgender patients have insurance. She said the focus is an outgrowth of the system’s attention to population health and health equity. Opening up hormone replacement therapy access can also mean general growth in other visits because patients feel welcomed and safe. Dr. Carolyn Wolf-Gould, a primary-care physician at Bassett Health in central New York, said she first started offering HRT in 2007 at the request of a new patient. Their transgender-specific care practice is embedded in a family medicine clinic. “Surgeries bring in a lot of revenue, and we’re doing a lot of the (transgender) surgical procedures at this point, but we’re billing for not only trans care,” said Wolf-Gould, adding that patients drive from up to four hours away for all kinds of care. “They choose to have their colonoscopy at Bassett because we offer gender-affirming colonoscopies, and the cardiologists know how to talk to trans people. Patients will come here to get their tests that they might otherwise do closer to home.”How to get started In April 2019, Atrium Health in Charlotte, N.C., opened a program for gender-diverse children and teens, the Levine Children’s Center for Gender Health. Led by Dr. Shamieka Dixon at their teen health clinic, the specialty grew out of her practice where she was already seeing a small panel of transgender adolescent patients for gender affirming hormones or primary care. Another Atrium pediatrician also had a large panel of transgender and non-binary children. With a new hospital administration, there was an opportunity to grow these services.
Words to know Transgender people are people whose gender identity is different from the gender they were thought to be at birth. “Trans” is often used as shorthand for transgender. Cisgender people are those who identify as the gender assigned at birth. Gender identity refers to your internal knowledge of your own gender—for example, your knowledge that you’re a man, a woman, or another gender. Sexual orientation involves other people that you’re attracted to. Transitioning is the time period during which a person begins to live according to their gender identity, rather than the gender they were thought to be at birth. Transition can include personal, medical and legal steps, including changing their name, using new pronouns, dressing differently and coming out to friends and family. Some, but not all, transgender people undergo medical treatments—sometimes known as gender-affirming care—to make their bodies more congruent with their gender identity. This can include hormone therapy, hair removal, surgeries and mental health counseling.
Sources: National Center for Transgender Equality and GLAAD
Dixon and her physician colleagues had many meetings with leadership, which led to development of the program, and they eventually expanded appointment slots for gender-based healthcare by 200%. In 2019, the clinic saw 68 new families with gender diverse youth and in 2020 that number grew to 169. “Gender healthcare efforts are often led by those of us who provide medical care, whether that be a department of endocrinology or adolescent medicine,” said Dixon, who is the division chief of adolescent medicine and medical director of Atrium Health Levine Children’s and the Center for Gender Health. “I think systems are getting on board, as they understand that this growing population needs care.” The care ranges from family and individual therapy, social worker involvement, discussing the possibility of puberty-blocking drug options, and for older adolescents and young adults, prescriptions for testosterone or estrogen and eventually referrals to surgical care. The clinic sees patients up to age 25. And despite adding more providers, there’s been a three-month wait list for new transgender or non-binary patients since it opened. Insurance issues While health systems increasingly offer this care partially because of an increased awareness and DEI efforts, it also comes down to money—a problem that could prove difficult even with insurance. Even after the ACA blocked insurers from denying care based on gender or sex status, it was unclear what gender-affirming services entailed. At the start, it was interpreted mostly to mean genital reconstruction surgeries. “But that’s not the only thing that affects someone’s gender,” said Zil Goldstein, associate director of medicine for transgender and gender nonbinary health at Callen-Lorde, a federally qualified health center in New York City. “It’s important to have coverage for things like facial feminization surgery and body contouring.” Coverage and access are still issues. As recently as July 2021, Blue Cross and Blue Shield of North Carolina updated its gender-affirmation surgery and hormone therapy policy to include facial feminization surgeries for the first time as medically necessary and not cosmetic. Advocates and clinicians were involved in pushing the insurer to make the change. Most insurers and providers follow standards of care set by the World Professional Association of Transgender Health for what is medically necessary, which are now more than 10 years old. An updated version is due out in 2022. While most insurers follow these standards, providers and patients say there are still difficulties.
WILLIAM J. NAZARETH JR.
Zil Goldstein, right, associate medical director for transgender and gender nonbinary health at Callen-Lorde, a federally qualified health center in New York City, confers with David Cole, nursing supervisor at the center.
By the numbers
$0.016 per member per month estimated insurance cost of providing medically necessary transgender-related services33% percentage who saw a healthcare provider and reported having at least one negative experience related to being transgender23% percentage who did not see a doctor when they needed to because of fear of being mistreated as a transgender person33% percentage who did not see a doctor when needed because they could not afford it
Sources: Massachusetts Group Insurance Commission study of costs for U.S. transgender population starting before transitional therapy; National Transgender Equality 2016 survey
“It (a claim for gender-affirming care) gets reviewed at the insurer level, most likely by someone who has no experience with gender-affirming care, and so then it will very often be the case that the understanding of medical necessity that is outlined isn’t applied,” Baker at the Whitman-Walker Institute said, which can result in a lengthy appeals process. Some insurers are trying to tackle these problems head on. Around 2016, Blue Cross Blue Shield of Minnesota started a project looking at the gender-affirming coverage policies and practices within the company. As a result, they changed some policies and started a gender care services initiative. The insurer hired a gender services consultant, who works with transgender or nonbinary members across all markets. The consultant participates in calls between members and customer relations on billing and coverage issues, provides specialized case management and makes sure transgender members find in-network providers. For instance, the consultant started hearing from members that while their policy covers gender-affirming hair removal, there was difficulty finding an in-network provider. “We were able to take that feedback and quickly implement a plan to address these concerns, including a strategy to ensure we make the most appropriate providers accessible to our members through the Blue Cross provider networks,” said Ani Koch, principal sustainability design consultant at the insurer.
Koch said BCBS Minnesota’s gender services program is one of the first of its kind in the U.S. Most plans don’t have teams trained in helping members or looking at access issues. And many health insurers still don’t even cover hair removal or facial feminization and masculinization procedures. “The ACA got the conversation started, but a lot of this is far beyond the minimum regulation of just not discriminating,” Koch said. “This is going from playing defense to providing affirmative care. And that’s the difference.” Another potential hiccup in coverage is the fact that self-funded employers in the state can opt out of providing gender-affirming care benefits. So BCBS Minnesota trained their commercial market account managers on educating employers about what they are opting out of covering, and the cost differential. “For a lot of programs, that specialized care coordination is a buy up, but this program is free to all members,” Koch said, adding that the vast majority of self-funded employers provide gender-affirming care benefits.
The importance of insurance There are also serious challenges for many transgender people who don’t have health insurance. “For many people in the gender-diverse community, access to insurance can be problematic, because there’s just pervasive discrimination throughout our entire system, and it can be harder for these patients to find employment and maintain employment,” said Natalie Frazier, clinician supervisor at Planned Parenthood South Atlantic, based in Raleigh, N.C. More than 1 in 4 transgender people have reported losing a job due to bias, and more than three-fourths have experienced some form of workplace discrimination, according to the National Center for Transgender Equality. And it wasn’t until 2020 that the Supreme Court ruled that federal law bars employers from discriminating against potential and current transgender employees. Where there are still gaps in care left by health systems, providers like Planned Parenthood and FQHCs step in. More than a third of patients working with Planned Parenthood South Atlantic are uninsured. And the care is needed: Once its clinics started offering hormone replacement therapy, one location in West Virginia saw a huge boost in patients and revenue, mostly from transgender patients. “These clinics have often been a place that have been not just willing to care for the needs of LGBTQ patients, but because of their mission, have been much more sensitive to the unique needs of marginalized populations,” said Ehrenfeld of the Medical College of Wisconsin. But these lower-cost centers only go so far. A portion of transgender patients choose to have gender-affirming surgeries, but without insurance, cost can be a big barrier. The cheapest vaginoplasty, a procedure that uses existing genital tissue to create a vagina and vulva, is around $19,000 in the U.S. “And that’s from the hospital system that’s been doing these procedures on a cash basis for many years and has put in a lot of effort to keeping their costs down,” said Callen-Lorde’s Goldstein. “But if you get a quote from a New York hospital that’s offering these procedures, the cash price is going to be around $60,000.”Lack of metrics Beyond insurer issues, the next frontier may be in quality and safety, a heavily measured area for some specialties, but not for transgender-specific care. People typically find care based on word of mouth or from local directories where providers submit their information and identify themselves as an inclusive provider. “The entire healthcare ecosystem needs to identify quality metrics, a way to say this is how we know that these are the providers that we should be referring folks to,” said Koch of BCBS Minnesota. One measurement could be patient satisfaction surveys for people after a surgery. Some suggest that providers or insurers could form an association to create a national database on providers to track surgery outcomes. But quality measurement in this field, like any other, can be nuanced and potentially used by insurers to limit access to providers. “An insurance carrier say they find anyone who meets the criteria, so they just can’t offer a service, or that they only have one provider that qualifies but isn’t very good at the procedure you need,” said Baker from the Whitman-Walker Institute. “(What) insurance does not cover, providers will not provide and then it becomes this cyclical relationship where you can’t get this care because it’s not reimbursed.” And the very last thing that Baker, along with everyone interviewed for this story, wants to see is care and coverage slip back to the way it was even just a decade ago.
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