Improving Care Access and Research Are Key to Boosting LGBTQ+ Kidney Care

Intersectional challenges

LGBTQ+ patients face many of the same barriers to health care as other marginalized groups, Reddy stated. Social determinants of health such as poverty, inadequate housing, economic and food insecurities, discrimination, and lack of insurance may all create barriers to access, he noted. For example, he said that one in three transgender adults has a household income below $25,000, and the same proportion has experienced homelessness in their lifetime (2). “Remember that being a sexual or gender minority is not the risk factor,” Mohottige said. “It is actually a domain through which other key social determinants of health are allocated.”

Social determinants of health may drive higher rates of risk factors for kidney diseases, such as smoking (3) and obesity, among LGBTQ+ individuals (4). Stress caused by marginalization also increases cortisol and causes other physiologic changes that can affect overall health or kidney health, Reddy noted. “Increased smoking and obesity run the cascade of exacerbating CKD,” he said. “Because social supports may be lacking, home dialysis and transplant may be more challenging.”

For individuals who have multiple marginalized identities, these challenges are often compounded, Mohottige explained. For example, she noted that gender and sexual minority individuals who are also from racially minoritized groups face much higher rates of violence. Additionally, gender and sexual minority individuals who have disabilities are more likely to face employment discrimination or health care access challenges. “Discrete categories like race and gender don't account for the multidimensional experiences of people experiencing simultaneous forms of marginalization,” she said. She noted that it is important to acknowledge individuals’ experiences and recognize how policies and social structures may affect them.

Despite recent progress in the United States, such as securing the right to same-sex marriage in 2015, equality for LGBTQ+ people have come under attack with discriminatory laws passed in 25 states that are home to 40% of the LGBTQ+ population, Reddy said (5). The same number of states has laws specifically targeting the rights of transgender individuals. “With every step forward that you take with communities, there are sometimes steps taken back,” he said.

Reddy stated that such laws make people feel unsafe. For example, a 2022 survey by The Trevor Project, a nonprofit organization, found that nearly half of LGBTQ youth had considered self-harm in the past year (6). The survey also found youth with support from their family had half the rate of suicidal ideation as individuals without such support, but fewer than one in three transgender or nonbinary youth reported they had such support. Supportive schools and communities were also protective. “Having affirming folks in your life helps substantially,” Reddy said.

Cultural humility

Too often, when LGBTQ+ individuals seek health care, they may find their clinicians are unprepared to provide safe and affirming care, which affects their ability to trust the medical system, Reddy noted. Two-thirds of transgender adults report worrying that their health evaluations will be affected by their sexuality or gender identity (2). Half of transgender adults report negative or discriminatory experiences with the health care system. “There is a large sense of mistrust, and that mistrust is not misplaced,” Reddy said. “We should be more supportive and inclusive.”

Reddy noted failure to inquire about sexual orientation or gender identity may make patients feel like they cannot share information about their lives or partners. Instead, they may report living alone and not having someone who could help with home dialysis or be a living donor. Creating a welcoming environment can help patients feel psychologically safe. He suggested examples such as routinely collecting sexual orientation and gender identity information in a non-judgmental way; learning and respecting pronouns and proper language when referring to patients and/or their partners; providing all-gender, single-user bathrooms; and displaying Pride (a celebration of LGBTQ+) flags or pins. He acknowledged that physicians may not always feel prepared for conversations about gender or sexuality, but training and cultural humility can help.

“Cultural humility is really important and being okay with not having all the answers, being okay with making mistakes and learning through the process,” Reddy explained. “With the right training, we could create a welcoming environment to invite the opportunity to talk about it, and if people don't want to, that's okay. But many people are willing to talk about it and don't feel like we are creating space for them.”

Because sexual orientation and gender identity data are not routinely collected in many clinical and research settings, there are significant gaps in data on this population. Reddy noted that fewer than 1% of National Institutes of Health-funded projects focus on LGBTQ+ individuals. Mohottige recommended engaging LGBTQ+ individuals at every point in the research process and designing better health care systems. “We need to center the expertise of marginalized voices as a starting point because that is where so much knowledge is inherently embodied,” she said.

Reddy also emphasized the importance of collective and individual advocacy. He noted ASN's decision to hold Kidney Week in Florida in 2022 and “bring ASN's [supportive] values” to the state, which had recently enacted a bill prohibiting the discussion of sexual orientation or gender identity in schools. During the meeting, ASN and its members donated approximately $35,000 to the onePulse Foundation, a local LGBTQ+ charity, he said.

Reddy noted that until 1973, the Diagnostic and Statistical Manual of Mental Disorders listed homosexuality as a mental disorder. However, advocacy by LGBTQ+ individuals and psychiatrists, such as John Fryer, MD, who had been removed from his residency at the University of Pennsylvania for being gay and was fired by another hospital for his advocacy, helped change that (7). “Individual advocacy has a strong place here, and there's good trouble to get into,” Reddy explained. “Sometimes it is with consequences, but it can leave a long-term impact for generations.”

Clinical considerations

Sex is frequently a variable used in clinical decision-making tools. However, clinicians may face questions about using these tools in the care of gender-diverse or gender-nonbinary individuals. Reddy explained that individuals who identify with their sex assigned at birth are cisgender, whereas individuals who identify as a different gender than their sex assigned at birth are transgender. Some individuals also identify as nonbinary (outside the gender binary categories of man and woman) or gender fluid (shifting between genders), he noted.

“There is a spectrum of gender identities,” said David Collister, MD, PhD, FRCPC, assistant professor, Department of Medicine, at the University of Alberta, Canada. Approximately 0.5% of the US population, or about 1 million people, identify as transgender (8). Based on data from the Centers for Disease Control and Prevention and the US Renal Data System, Samira Farouk, MD, MS, FASN, a transplant nephrologist and professor of medicine and medical education at the Icahn School of Medicine at Mount Sinai, estimated that these data translate into approximately 176,000 transgender individuals with CKD and 4000 with end stage kidney disease.

Some transgender individuals receive gender-affirming hormone therapy or surgery to help their physical appearance match their gender identity. Gender-affirming care improves quality of life, mental health, and sexual function, Collister noted. The Endocrine Society's 2017 guideline (9) for gender-affirming hormone therapy highlights myriad treatment choices, which may include oral, sublingual, transdermal, or injectable options, Collister noted. However, there is no mention of a need for kidney-function monitoring or kidney risks in either the Endocrine Society guidelines or the World Professional Association for Transgender Health's standards of care (10), Collister said.

There are limited data on the kidney-related considerations of gender-affirming care, but Collister and other researchers hope to have more information in the coming years. In the meantime, he highlighted a few potential kidney-related considerations to gender-affirming hormone therapies (11). Typically, transgender women receive an estrogen and an anti-androgen, such as spironolactone, he said. “With spironolactone, you have to be careful with side effects of hyperkalemia, so it is generally not advised if the patient's eGFR is less than 30,” he warned. European clinicians typically use cyproterone acetate, which does not have to be renally dosed, he said.

Testosterone may be given to transgender men in several formulations, including patches and gels, to reach the normal reference ranges of testosterone of cisgender men, Collister said. Farouk noted that taking testosterone may increase a patient's creatinine to a level close to the threshold for acute kidney injury, whereas taking estrogen may lower creatinine levels and has been shown to have kidney-protective effects (12).

Collister recommended using both male and female inputs to calculate transgender patients’ eGFRs and engage in shared decision-making with patients, acknowledging the potential uncertainty due to limited data. Additionally, he noted that a sex-free and gender-free version of the CKD-Epidemiology Collaboration (CKD-EPI) 2021 was also presented at Kidney Week 2023 (13), and the European Kidney Function Consortium also has a new gender-free and race-free formula (14). “The bottom line is if you’ve got to know a patient's GFR precisely for clinical decision making, do a measured GFR, and measure proteinuria,” he said.

Farouk agreed that it was essential to look at eGFR estimates with both male and female coefficients for transgender individuals and assess which estimate is likely to be most accurate based on the patient's circumstances. She said that this is particularly important when a patient's eGFR on one of the calculations crosses a clinically important threshold. “We put a lot of weight on this number, even though we recognize how much uncertainty there is,” she said.

For example, she highlighted the case of a 55-year-old transgender woman who presented to a transplant center for evaluation with well-controlled diabetes and hypertension. In addition to metformin and nifedipine, she was taking estradiol and spironolactone. Using the CKD-EPI equation with creatinine alone with a male coefficient, the patient had an eGFR of 26, but with a female coefficient, she had an eGFR of 19. However, with the CKD-EPI with cystatin C alone, the patient's eGFR was below 20 with either gender coefficient.

Farouk noted that a patient taking exogenous estrogen may potentially be at increased risk of pulmonary embolism or deep vein thrombosis (DVT) when immobilized after surgery (15). “Transdermal preparations may be better [than oral ones] in this context [transplant surgery], not only for those with CKD but also perhaps for those preparing to undergo any surgery,” she said.

Collister cited research in cisgender women that showed that taking estrogen-containing oral contraceptives activates the renin-angiotensin-aldosterone (RAS) system because it must be first metabolized by the liver (16). Transdermal application of estrogen-containing contraceptives, however, circumvents the liver and is not associated with as much RAS activation, which may be better for patients with CKD.

“There [are] no data to support routine perioperative discontinuation of gender-affirming hormone therapy, and this decision needs to be the result of shared decision-making, and the risks and benefits need to be discussed, including the impact of discontinuation on [a] patient's mental health,” Farouk added. “Perhaps for this particular patient, stopping hormone therapy [would have been] more harmful than this theoretical risk of developing DVT.”

Farouk also recommended shared decision-making with transplant patients who may be considering the risks of future gender-affirming surgeries and their potential impact on the allograft or discussing the optimal timing of surgeries. She said clinicians use the same process for transplant patients considering any future surgeries. Farouk emphasized the importance of clinicians learning about gender-affirming therapies and connecting with experts on transgender care.

“It is our role to become comfortable and familiar with [gender-affirming therapy and its effects] so we know what the right questions are to ask and know where to go when we need help,” Farouk said.