Affirming care makes it easier for kidney patients in the LGBTQ+ community to stay connected with their health care professionals, and that can save lives.
Patients who identify as LGBTQ+ face injustices in their everyday lives, including a disproportionate rate of kidney disease compared to those not in the LGBTQ+ community. The National Institutes of Health recommends multidisciplinary efforts to eliminate disparities affecting LGBTQ+ people.
The Effort Makes a Difference
Kidney transplant recipient Kim Müller, who identifies as lesbian, is grateful for her medical team, who have supported her for decades in her journey through kidney disease. In fact, she doesn’t know where she would be today without them.
“I’ve trusted my transplant center and they trust me,” said Kim, 65, who lives in Southern California and serves at a National Kidney Foundation (NKF) Patient Advocate. “They are just awesome. I am so grateful to my healthcare team at UCLA. I am so grateful for everyone who takes care of me. And I am so grateful that being gay here has never been any big deal.”
The acceptance that Kim and her partner, Alissa Marquis, of 28 years have always received is critical when it comes to kidney health care, and medical professionals need to know how important it is to LGBTQ+ patients, she said.
Stats Highlight Disparities
But Kim’s experience is not universal and too often LGBTQ+ patients avoid the doctor’s office out of fear of discrimination or judgment1.
LGBTQ+ people in the U.S. are at disproportionate risk of kidney disease. Cost, denial of care, job loss, fear of discrimination, and harassment can get in the way of sick people in the LGBTQ+ community from seeking medical care.
Further investigations suggest that many people in the LGBTQ+ community avoid sharing their family life with their medical professionals out of fear of judgment or because of past negative experiences.
“If patients don’t feel comfortable sharing this part of their lives with their medical team, it will adversely effect their care and treatment,” Kim said. “There are so many barriers that need to come down because kidney patients need support.”
Family Matters in Kidney Care
Kidney disease, especially end-stage kidney failure, is a diagnosis the entire family must fight together, Kim said. Everyone treating kidney disease, from primary care physicians to dialysis centers to transplant teams, want to know, in fact need to know, that a patient has support at home, Kim said.
“A patient can’t even get on some transplant centers’ waitlist unless they can prove they have support at home,” Kim said. “You can’t even start home dialysis unless you can show you have a care partner at home to help.”
If patients don’t open up about their family, then they might be denied care they need, Kim said.
What Inclusive Care Feels Like
Kim was diagnosed with polycystic kidney disease in 1999 and received a living-donor kidney transplant in 2012 from a then anonymous donor. She has readily shared her sexual orientation most of her life and she took that same approach with her medical team when she first faced kidney disease and then transplantation.
“It was critical that my team know and meet my partner, given that she would be my caretaker after surgery,” Kim said. “She also was an active participant in my training for home peritoneal dialysis. My doctors also knew that Alissa was my ‘next of kin’.”
Often her medical team spent a lot time checking in on Alissa’s feelings as the couple navigated through the overwhelming process of end-stage kidney failure, Kim said.
“She was with me at many of my appointments and we were widely embraced, and they were happy that I had strong support at home,” Kim said.
One study published in August 2020 called “Ensuring Gender-Affirming Care in Nephrology” recommended that “the nephrology workforce implement the following actions to enhance…care:”
- Use affirming language when talking with patients;
- Promote tools to improve care for LBGQT+ patients across all clinical environments;
- Improve inclusive engagement of individuals in research and in the workforce;
- Advocate for and implement nondiscrimination policies that explicitly include gender identity, sex, and sexual orientation to protect all patients.
Kim recommends to medical professionals:
- “I would encourage doctors to get to know their patients a little better and establish trust with them.”
- “If a patient never mentions or brings their partner along to an appointment maybe the doc should inquire, in a non-threatening way, as to how their partner is doing regarding their diagnosis, or current health challenges.”
- “Obviously with HIPPA protocols, it's also important that one's partner/spouse be included in the patient's chart as the family member entitled to the information.”
- “The patient needs to feel comfortable sharing that information with their docs, without fear of judgment.”
The more a medical team can provide an inclusive and accepting environment, the better outcomes will be for their patients and according to Kim and others, it makes a difference.