Originally published in Healio, June 2024.

June 17, 2024 | By Kate Burba

According to a 2021 Gallup poll, 7.1% of the U.S. population reported identifying as LGBTQIA+ — “nearly double” the percentage in 2012 — including one in five Generation Z adults.

Despite these growing numbers, historically upheld bias, stigma and discrimination on both societal and provider levels continue to marginalize patients in this population and affect equitable access to health care.

“It starts off with individuals in positions of power within the medical and health care community using stigmatizing language and making the community of sexual and gender minorities feel minoritized and like they are not deserving of the same kind of treatment as others,” Alexander M. Goldowsky, MD,attending gastroenterologist at Beth Israel Deaconess Medical Center, instructor at Harvard Medical School and Rainbows in Gastro board member, told Healio Gastroenterology.

These discriminatory events in medicine date back to the psychoanalytic movement of the 1950s, when homosexuality was labeled as a mental disorder in the “Diagnostic and Statistical Manual of Mental Disorders.” Another example of medical discrimination surfaced in 1983, during the HIV and AIDS crisis, when the FDA enacted a lifetime ban on blood donation by men who have sex with men.

These events and more have culminated in a paucity of trust between patient and provider.

“Unfortunately, a lot of this has carried forward and we are now in an era where, while outwardly there may seem to be increased acceptance regarding the rights of LGBTQIA+ patients, there is still a significant barrier when it comes to education,” Goldowsky said.

According to an article in The Lancet Gastroenterology & Hepatology, a 2015 U.S. national survey showed 23% of transgender adults avoided necessary health care due to fear of mistreatment by a provider. Another survey revealed up to 89% of transgender and 49% of LGBTQIA+ patients in the U.S. did not think there were enough trained providers to care for sexual and gender minority (SGM) people.

To overcome this perceived deficit in education and training in gastroenterology and hepatology, a group of gastroenterologists, hepatologists and advanced practice providers, who identify as members of the LGBTQIA+ community, formed Rainbows in Gastro in 2022 to advocate for improved care for this marginalized group.

“Rainbows in Gastro is the first group of its kind in terms of GI and liver specifically,” Howard T. Lee, MD, FAST, a gastroenterologist, transplant hepatologist and assistant professor of medicine and surgery at Baylor College of Medicine, chair of the LGBTQ+ Taskforce for AASLD and executive board member of Rainbows in Gastro, told Healio Gastroenterology. “One of the reasons is that in the past, GI as a procedure-based specialty was often considered not as LGBTQIA+ friendly.

“Also, there are certain conditions, like viral hepatitis and anal cancers, that affect LGBTQIA+ people disproportionately, which is another reason why we started this.”

In this exclusive, Healio Gastroenterology spoke with LGBTQIA+ advocates across the field about how to promote a safe and open environment in practice, the importance of addressing sexual health with patients and steps needed to advance education and training.

Disease Prevalence in GI and Beyond

In 2016, the National Institute on Minority Health and Health Disparities designated SGMs as a health disparities populationChristopher Vélez, MD, and colleagues wrote in The American Journal of Gastroenterology that the health disparities this community has historically faced are “further compounded in transgender and intersex individuals.”

According to Matthew B. McNeill, MD, a gastroenterologist at Summit Health and clinical assistant professor at NYU Langone Health, LGBTQIA+ youth are more likely to experience homelessness and unemployment, are “two to three times more likely” to commit suicide and have higher rates of substance abuse.

In an interview with Healio Gastroenterology, McNeill also noted that lesbian women are less likely to obtain preventive care, including colonoscopies, and are more likely to be overweight or obese, which may lead to metabolic syndrome or fatty liver disease. Gay men are more likely to have higher rates of STIs and HIV, as well as eating disorders and body dysmorphia, and transgender individuals are “often being banned from having access to affirming care in many of our states.”

According to data published in The American Journal of Gastroenterology, a population-based survey in the United Kingdom showed lesbian and bisexual women had an increased risk for oropharyngeal cancers (OR = 3.2; 95% CI 1.7-6), and bisexual and gay men had higher rates of viral-associated cancers, including Kaposi sarcoma (OR = 48.2; 95% CI, 22.-105.6), anal cancer (OR = 15.5; 95% CI 11-21.9) and penile cancer (OR = 1.8; 95% CI, 0.9-3.7).

In addition, data published in Clinical Liver Disease showed the prevalence of hepatitis C virus is higher among MSM aged older than 30 years who have HIV (6.5% vs. 1.5%), while MSM also represent up to 24% of new hepatitis B virus infections.

“Unfortunately, a lot of data we have on this is not the best quality because sexual orientation and gender identity data is not well-collected,” Lee said. “I am sure there are a lot of other conditions that disproportionately affect the LGBTQIA+ community, but the discrimination and marginalization of these people has led to fear. They are afraid to talk about their sexual practices, which ultimately delays care.”

In many cases, getting these patients into the clinic depends on comfort and creating a “safe place where they can feel free to talk about their identity,” Lee added.

Building Trust: From First Impressions to Patient-Provider Interaction

For most patients, the first impression is just one factor that may determine whether they return for a follow-up appointment. For LGBTQIA+ patients, that first impression could be everything.

“LGBTQIA+ people are particularly perceptive for two primary reasons: one, to be frank, out of safety and two, because they want to find someone who can be an ally or who is also a member of the community to show that this is a safe zone,” McNeill said. “As it pertains to the physical office setup, that outward sign of acceptance — whether it is a pin on your jacket, a window decal, a sign on the wall or a badge sticker — can bring an immense level of comfort and openness for patients and change the whole experience.”

Other signs of acceptance, Goldowsky noted, include the Progress Pride flag or, “more subtly,” the Human Rights Campaign logo — a bright yellow equal sign on a dark blue background. Gender-neutral bathrooms are an added bonus, though they require institutional buy-in.

According to Laura Targownik, MD, FRCPC, associate professor of gastroenterology and hepatology at the University of Toronto and member of the steering committee for Rainbows in Gastro, another important factor is making sure all staff members are adequately educated on how to respectfully manage and greet patients.

“LGBTQIA+ patients, and especially transgender patients, want to know they are entering an environment that is affirming and respectful of people who are gender-diverse,” she said. “This includes making sure your front office staff — the first people your patients see — are referring to people by their pronouns.”

At the Mount Sinai Hospital IBD clinic where Targownik works, patients receive a link to an online intake survey, which includes important medical questions as well as an option to note their first name, pronouns and gender identity.

Once a patient checks in, McNeill said it is “important to be proactive” with intake paperwork to make sure it includes all-encompassing demographic questions.

“This can be extraordinarily helpful and take a lot of the uncertainty out of the equation right from the get-go,” he added.

According to McNeill, intake paperwork could include:

  • the patient’s preferred first name and pronouns;
  • gender selections that are not limited to “male, female, other or prefer not to disclose”;
  • medical reconciliation and surgical history; and
  • organ inventories, for the transgender community.

Past the waiting room, Goldowsky noted one of the “most important things” is to normalize questions being asked and ask them of everyone.

Goldowsky first greets all patients with gender-neutral language and allows any companions in the room to introduce themselves, instead of making assumptions about their relation. He then asks patients what they would like to be called.

“I preface it by saying I ask all of my patients this,” Goldowsky said. “Most patients are fine, some patients are confused and other patients may roll their eyes, but that’s OK. By normalizing it and explaining that some of my patients use different pronouns I am doing right by them and not cherry-picking certain situations.”

According to Lee, it may also help patients if the provider starts by introducing themselves and their own pronouns to kick off the conversation.

A patient’s sexual history and orientation, however, may not always be relevant when gathering information about their medical history. For example, if a patient complains of acid reflux, their sexual history and orientation is not as important, Goldowsky noted. Conversely, if their chief complaint is related to diarrhea, a provider needs as much information as possible in order to adequately create a differential as well as counsel patients on next steps in care.

According to Goldowsky, questions may include but are not limited to:

  • the patient’s sexual history;
  • whether they are currently sexually active;
  • how many partners they have and their gender identities; and
  • whether they engage in anal penetration.

“The key is cultural humility and kindness,” Lee said. “If you start adopting these strategies — gender-neutral language, pronouns and first names — as you begin interviewing all your patients, you will create a friendly environment that encourages your patients to open up about their sexual orientation or gender and how you can help them.”

Special Considerations for the Transgender, Gender Nonbinary Community

Transgender and gender nonbinary patients who undergo hormone therapy or gender-affirmation surgery represent a unique group of patients in the LGBTQIA+ community. Though gender-affirming hormones are believed to potentially affect the GI tract, limited evidence exists that major GI conditions are associated with administration of gender-affirming hormone therapy (GAHT), Targownik said.

“We do know that estrogen may increase the risk for developing thrombosis, which may be of concern for people with IBD, where the risk of thrombosis is already increased,” she noted. “There are not yet studies that demonstrate that transwomen with IBD using GAHT are at high risk for adverse outcomes. Similarly, androgens may cause a slight increase in liver enzymes and lipid levels, but there are no data to suggest that androgens in the doses provided in GAHT have long-term impacts on liver health.”

Currently, Targownik said that there are few circumstances in which she would withhold hormone therapy in people with chronic GI diseases, but that a discussion of potential risks of thrombosis for estrogen users on IBD is still important so patients can make an informed decision.

She added: “Similarly, there are no guidelines currently on how people living with IBD should approach decisions on having bottom surgery, given that IBD often affects the rectum and perineal area.”

For example, Targownik explained that for a patient with Crohn’s disease complicated by perianal fistulizing disease, or a patient with ulcerative colitis with rectal involvement, gender-affirming bottom surgery may be technically challenging and may involve a higher risk for complications. She stressed the importance of multidisciplinary rounds involving the gender surgeon, IBD medical and surgical specialists, and other ancillary staff to assist the patient in decision-making in these complex situations.

Further research on gender-affirming care in the transgender and gender nonbinary community may elucidate its effect on the GI tract and inform future standards of care.

Having Neutral Discussions on Sexual Health

A common concern among patients who identify as LGBTQIA+ is that their sexual orientation and practices will automatically be blamed for the symptoms they are experiencing, McNeill said. While their identity is not relevant in every situation, sexual health often plays a critical role in GI symptoms and diseases.

“It’s crucial to acknowledge the importance of sex on a patient’s physical and emotional well-being, so advice such as ‘don’t have sex’ is never the appropriate response,” he said. “But it is important to acknowledge that there are GI issues that perhaps more negatively affect certain members of the LGBTQIA+ community as opposed to other communities.”

Goldowsky recommended “doing your due diligence” and normalizing conversations around chief complaints that may involve sexual practices such as constipation, diarrhea, bleeding and, depending on the location, abdominal pain. An important question to ask is whether they have recently been tested for STIs, as this may play a role in their symptoms.

“It really is about not anchoring on a single diagnosis,” Goldowsky said. “It is about keeping the differential broad and your mind open to different possibilities. If you don’t collect the full history, you are never to be able to get all the information you need.”

In addition, Lee recommended using neutral language when talking about sex and always providing context as to why these questions are being asked.

“Everyone has a different lifestyle that can impact their health behavior,” he said. “It is our job as providers to educate them on the risks in a culturally sensitive manner without passing judgement.”

The overarching goal is for the patient and provider to work together in finding a solution to their symptoms that does not preclude their lifestyle.

McNeill noted: “Sex shaming is a quick way to have a single visit with a patient and never have a follow-up.”

Next Steps in Advancing Training, Research

Despite efforts and recommendations from national organizations such as The Joint Commission and The Fenway Institute, which assist institutions and providers in providing all-encompassing LGBTQIA+affirming care, health care professionals continue to report a lack of training to meet the needs of these patients.

Results from the 2022 inaugural State of LGBTQ Health National Survey from the National Coalition for LGBTQ Health showed that of 2,344 surveyed providers, 48% requested LGBTQ+ focused trainings. The top four requested training needs were general LGBTQ+ health curriculum (39%), trauma-informed care (28%), cultural competency, awareness and humility (28%) and stigma (21%).

“It is important that we acknowledge we are not there yet,” McNeill said. “At a bare medical level, whether it is medical school, residency, fellowship or on a societal level, we need to have dedicated LGBTQIA+ specific trainings and repeated lectures on these topics so that we ensure everyone who is going through this process has at least some exposure to this.”

For gastroenterology in particular, Lee added it is important to incorporate training on how certain conditions disproportionately affect the LGBTQIA+ population.

“Another big focus is helping support research and further study of the SGM community — making sure that clinical trials include members of this community and that we are engaging with leaders within the community to understand the most important issues and topics right now,” Goldowsky said.

In a highly divisive world, patients want to know they are safe and supported. Lee advised providers to be outspoken regarding their support of LGBTQIA+ friendly policy and legislation.

“For me, everything boils down to being a good person,” Goldowsky added. “Treat your patients the way that you would want to be treated as a patient, show that you care, be open-minded and just listen.”