Creating Safer Kidney Care Spaces for LGBTQIA+ People

What does feeling truly seen and supported mean in your health care? For many LGBTQIA+ people with kidney disease, the answer isn’t simple.

Jess Walters is a mixed-media artist, Board Certified Patient Advocate, and independent scholar living with a kidney transplant. Marissa is the Patient Programs Director at the National Kidney Foundation (NKF) and a social worker working to make kidney care more inclusive. Together, they share what supportive care and community look like and why they matter. When Jess legally changed their name after coming out, they expected paperwork challenges.

They didn’t expect it would stop them from getting the medicine they need to protect their kidney transplant. “I changed my name everywhere except my Social Security card, because they don’t allow nonbinary options,” Jess said. “The next time I went to the pharmacy, my name didn’t match their records. The pharmacist refused to give me my medications.”

Jess knew that missing even one dose of anti-rejection medication could put a transplant in danger. “My doctor resolved the issue that day, but not everyone is so lucky,” Jess said. “My doctor’s advocacy is an exception, not the rule.” Jess also experiences constant misgendering from check-in, with nurses, and technicians.

“It’s a constant barrage of ‘I don’t see you,’” Jess said. “As a transplant recipient, I’m frequently in clinics. It affects my mental health, which impacts my physical health.”Stress can raise blood pressure, which can damage the kidneys.And that’s not even factoring in the anxiety of wondering whether their gender identity might one day disqualify them from a second transplant.

“There’s a chance I’ll need a new kidney someday,” Jess said. “Some clinicians believe that gender dysphoria makes you ineligible. A biased individual could cost me my life.”Jess’s experience opened their eyes to the other inequalities in the healthcare system. “The healthcare system doesn’t work for everyone equally—not just for LGBTQIA+ people, but for anyone with a marginalized identity. Whether it’s your race, gender, orientation, religion, housing, or job status—it can affect the care you get and whether you get it at all.”

Learn more about inequities in kidney care.

The Importance of Community

Jess was diagnosed with Alport syndrome, a rare genetic disorder that affects the kidneys, hearing, and eyes, when they were 16. “My doctor told me I’d likely never meet another person living with Alport Syndrome, Jess said. “I felt destined to go through my journey alone.” Years later, a simple Google search led them to the Alport Syndrome Foundation.

“I met other patients online. Then I went to Italy in 2019 to meet Alport patients from all over the world in person,” Jess said. “Now, I have friends in the UK, Greece, China, and more.” That experience changed Jess’s life in the best way. But finding a space that embraced all of their identities was harder. “It’s rare to find a queer disabled kidney community,” Jess said. “But you can get little doses of different communities in different spaces.”

For Jess, those doses come from online groups, nonprofits like NKF, and art spaces in Charlottesville where they create zines, small handmade magazines, by and for women, nonbinary, and gender-diverse artists. Jess is especially known for their zines in NKF's Voices for Kidney Health advocacy community.