When LGBTQ health is at stake, patient navigators are ready to help

Figuring out health care can be a challenge for anybody. For LGBTQ people, many of whom routinely encounter discrimination when they need such care, it can be daunting.

Which is why some health care systems have begun to offer guides, or navigators, to get people the help they need.

“A lot of our patients come from a vulnerable place,” said Rebecca Vanden Bergh, the LGBTQ health services patient advocate for primary care at Denver Health in Colorado. And whether they’re just looking for a new doctor or taking the first step toward getting gender-affirming care, “a lot of our patients really benefit from having someone like me who is there to make sure that they are getting connected with a person who is immediately going to provide a safe environment for them.”

The term “navigator” implies giving someone directions. But LZ Mathews, a licensed social worker who is program manager and a patient navigator at the Penn Medicine Program for LGBTQ+ Health in Philadelphia, said the job is also about teaching and bridge-building.

“I help folks problem-solve what barriers have come up for them in the past or may potentially be posed to them in the future,” Mathews said. Sometimes that means educating people about how to schedule care. Sometimes it’s about helping them figure out their insurance plans.

“Some folks might just want to be working with someone who is affirming of their identity and who is culturally responsive to LGBTQ+ health-related needs,” Mathews said. Others might need a specialist, such as a cardiologist, and want somebody they can trust.

Mathews, who uses gender-neutral pronouns, also connects people with LGBTQ community organizations, social groups and peer support groups. If Mathews’s employer does not offer what someone needs, Mathews refers them somewhere that does. Mathews also gets feedback about patients’ experiences and relates that back to practitioners.

Vanden Bergh, whose preferred pronouns are both she and they, works with a mix of adult and pediatric patients. Some require little more than an email confirming an appointment, “but other folks want to check in after the appointment and say, ‘This went well,’ or ‘This didn’t go well. I think I need someone else.'”

Tracy Scott, administrative director of LGBTQ+ health services at Denver Health, said the job of a navigator is about more than just putting a friendly face on a complicated system. It’s about creating “a safe, welcoming space,” Scott said, so people “who have not always been treated properly engage in their own health care” and see long-term benefits to their health.

The idea of navigators for people who face barriers to care is not new. In the 1960s, federally recognized community health workers helped migrant workers. A navigator program for cancer care was pioneered in New York City’s Harlem neighborhood in 1990. Peer navigators also helped people with HIV in the 2000s.

Although research on navigators in general is limited, and no identified source tracks the number of LGBTQ navigators in particular, programs have popped up around the country. Their appearance coincides with a growing awareness that LGBTQ people face unique threats to their health.

For example, a 2020 American Heart Association scientific statement noted that gay and bisexual men may be at higher risk for high blood pressure. LGBTQ people also face harmful psychosocial stressors from discrimination.

LGBTQ people can regularly encounter such discrimination when seeking care. Echoing other reports, a Kaiser Family Foundation survey published in April found that 24% of LGBT adults report having a negative health care experience in the past three years that caused their health to get worse. That compares with 9% of non-LGBT adults.

In the 2022 U.S. Transgender Survey of more than 92,000 transgender people, 24% had avoided seeing a doctor when they needed to in the prior 12 months because they feared mistreatment. Of those who sought help, 48% reported a negative experience, such as being refused health care, being misgendered or having a provider use harsh language or become physically rough or abusive.

Many adult patients Vanden Bergh helps say they haven’t had an annual physical exam in “years and years” and come from “a background of mistrust of the medical system based on real mistreatment by previous providers,” she said.

So, navigators also offer emotional support. Scott said her team had helped one trans man who scheduled an appointment and then asked, “Could someone come with me to my appointment? I’m really nervous and experiencing a lot of anxiety.” A navigator met him in the lobby and stayed until the exam began.

“This is part of why navigation is necessary,” said Scott, who said Denver Health launched its LGBTQ+ program in 2017 as part of “recognizing some of the historical systemic trauma and harm that has been done to LGBTQ+ communities at the hands of health care systems.”

At Penn Medicine, which has provided navigation support since about 2014, Mathews said, “I’ve worked with patients who’ve experienced outright abuse from outside health care providers in the past. And all of this really changes the likelihood that someone will seek health care again.”

Solving problems, Mathews said, “is not as simple as lifting a curtain and suddenly everything is accessible,” partly because few doctors have the training and community experience to support all LGBTQ patients.

Mathews’ job includes talking to doctors about their background and, if necessary, helping them understand the importance of simple things, such as asking patients the name they go by and the pronouns they use. It might also include a discussion about sharing their own pronouns, or acknowledging a patient’s prior trauma, as a way of establishing trust.

“In some ways, we can start the conversation before the patient’s even seen,” Mathews said.

The work keeps navigators in demand. The Penn Health program serves more than 500 patients a year, Mathews said. At Denver Health, Scott estimated her team helps 100 new patients just for primary care each month.

Scott said their program has seen more patients every year since its founding. She takes that as a vote of confidence. “LGBTQ+ communities take care of each other,” she said. “And if care is not affirming, and it’s not a safe space, and this is not where you want to go—people are going to let each other know that.”

Both the Denver and Philadelphia programs have seen an influx of people fleeing states where gender-affirming care bans have become law. That has added an additional layer to the work of a navigator, who can help someone start anew after severing connections to health care professionals in their home state.

Vanden Bergh put together a guide to hotels and restaurants for out-of-towners and also has helped counsel visitors who are scared of what might happen when they return home.

Their fears can have an effect on navigators, who get exposed to that trauma secondhand. “We are primarily folks of the LGBTQ+ community,” said Scott, who uses the pronouns “she” and “her.” “And part of what makes folks qualified to do this work is it is a real commitment, a real dedication, lived experience, and an awareness of what it’s like to navigate the world and the health care system as an LGBTQ+ person.”

They get to celebrate successes as well.

Mathews recently heard from a couple of patients who first sought help a year and a half ago to establish primary care. After developing a trusting relationship with their primary care team, the two patients are ready to take the next steps in getting gender-affirming care. Scott said that one young person recently said her care in Denver was “the first time she’d been consistently referred to by her affirming name and her affirming pronouns, and that it was giving her the confidence to move out into the world and to come out to people and to accept care that she needs.”

People looking for a navigator might start by looking for a community organization that specializes in LGBTQ care, Scott suggested.

Mathews said that while directories of LGBTQ-affirming health care can be helpful, they don’t always list navigators. Mathews suggested looking at a health system’s website and seeing what they offer.

Vanden Bergh expects the demand for LGBTQ navigators to grow.

“As safe spaces become available, people who have always been there and have always existed finally feel comfortable to come out and ask for that care,” she said. “So I think that as we see this care continue to become more available, we will see the true breadth of folks who need access.”

Mathews doesn’t see the work as being a savior of some kind. Instead, it’s about helping people overcome entrenched problems to get the care they deserve: “We have a responsibility to bridge the gaps.”