Each year throughout June, Pride Month commemorates the 1969 Stonewall Uprising that erupted following a police raid of a popular West Greenwich Village nightclub, the Stonewall Inn. Today, the annual event celebrates LGBTQI culture and promotes equality and social justice nationwide. From a health care perspective, the month is an opportunity to acknowledge that there is still a lot of work to be done.
The American Cancer Society first began reporting on cancer disparities by race and socioeconomic status in the United States in 1986, but according to the National LGBT Cancer Network, none of the largest national cancer registries and surveys of cancer incidence collect data about sexual orientation or gender identity. The scant information offers little to explain suggestions that the LGBTQI community faces a disproportionate burden of cancer.
Here, Mandi Pratt-Chapman, PhD ’20, associate center director for community outreach and engagement for the George Washington University (GW) Cancer Center, associate professor of medicine, GW School of Medicine and Health Sciences, and associate professor of prevention and community health in the Milken Institute School of Public Health at GW, discusses the effects of health care disparities among the LGBTQI community and offers strategies to address them from both an individual provider, and broader community perspectives.
What is your role at the GW Cancer Center, and how does that relate to the LGBTQI community?
Pratt-Chapman: I have a primary appointment as associate professor of medicine in the GW School of Medicine and Health Sciences, a secondary appointment as associate professor of prevention and community health in the Milken Institute School of Public Health at GW, and I serve as associate center director, community outreach and engagement for the GW Cancer Center. In my capacity as an associate center director, I am responsible for collaboratively identifying catchment area needs as well as implementing evidence-based practices and catalyzing research to address those needs. The Washington, D.C., metropolitan area has rich diversity and the LGBTQI population is among the highest in the nation per capita. Thus, sexual and gender minority subpopulations are an important part of the community our cancer center aims to serve, along with Black, Latino, and diverse Asian and immigrant communities. In addition, as a researcher, I focus on facilitating community-driven research to respond to the health needs of LGBTQI people and training health care providers on affirming care practices for LGBTQI people.
Why should a cancer center focus on the LGBTQI community?
Pratt-Chapman: All cancer centers should focus on the populations they are serving, so all cancer centers should focus on the LGBTQI community, because we are in every community. LGBTQI people come from every nation, language, religion, culture, race, ethnicity, and zip code. LGBTQI people have unique health and health care needs, and they — like all patients who walk through the door with a potential or confirmed cancer diagnosis — deserve excellent, affirming, and comfortable health care.
Is it true that the LGBTQI community experiences disproportionately high rates of cancer and poorer cancer outcomes?
Pratt-Chapman: This is a good question. The LGBTQI community exhibits behavioral risks that are linked to higher risks for some cancers. For example, bisexual women have the highest tobacco and alcohol use compared to straight or lesbian peers. Anyone who practices anal penetrative sex has a higher risk for HPV and thus for HPV-related cancers. Queer people do not have a higher risk of cancer because they are queer, just like Black people do not have a higher risk of cancer because they are Black. People have higher risks of cancer largely due to extreme inequities in social determinants of health. People with lower access to high-quality, affordable food, who lack safe places to exercise, and/or who lack financial security; people who fear health care discrimination or denial; and people who experience chronic stress from social stigmatization are at risk for poorer health outcomes.
In the United States, some LGBTQI people, like other historically excluded and stigmatized groups, may have higher maladaptive behaviors (such as higher alcohol or tobacco use) in response to extreme and chronic stress. Transgender men have the additional burden of significant gender dysphoria for cervical cancer screening. Lack of provider training in affirming communication skills can dissuade LGBTQI people from accessing needed cancer screenings or delay treatment.
These are the things that lead to worse health outcomes – not queerness itself.
Is there a medical explanation, an environmental exposure explanation, or an access to care explanation for those high rates and poor outcomes?
Pratt-Chapman: There is a historical and political explanation, based on the reinforcement of power structures that benefit those who are closest to a “mythical norm” (credit to American poet Audre Lorde on this term) of what it means to be American — male, white, straight, financially stable, tall, and thin. The further one is from this mythical norm, the more one thinks, as Lorde put it, “That is not me” — the greater the risk for poor health outcomes.
We have to move away from zero-sum thinking. This kind of thinking assumes that by one group getting benefits, another group will lose benefits. Ultimately, this has been proven untrue – in fact, when one group hurts, that hurt spreads to all of us psychologically and physically. COVID-19 is just one example, but a powerful one, that we are interconnected.
What barriers to cancer care have you witnessed or heard about from members of the LGBTQI community? Are there any barriers that are specific to LGBTQI patients?
Pratt-Chapman: First, it is critical to emphasize that we are not monolithic within the LGBTQI “community.” We are many communities. In states where there are laws that allow for discrimination of transgender people, barriers to health care are enormous.
I have heard stories from transgender women who were called by their “dead name” in a waiting room and wanted to leave but needed to stay for urgent care. I also have heard a story from a transgender woman whom providers called “he” after literally just completing gender re-assignment surgery.
For transgender men, sitting in a “Women’s Center,” needing to wear a pink gown, fearing misgendering before and during an appointment, or the pain of a screening procedure may cause major delays or avoidance of needed care. In one study I led, a participant said he sought health care only “when the pain was so acute or if I think I’m going to die.”
For same-sex couples, affirmation of a partner or spouse as caregiver or co-parent in health care settings has been a problem. That is changing in many areas, but it still is a concern for some patients.
What can physicians and health care providers do to help address these barriers?
Pratt-Chapman: First, do your homework. No patient should have to come in and educate their providers over and over again about basic health issues. I have heard from numerous transgender people that entered Emergency Departments that they had to educate their provider about very basic post-surgical concerns after gender affirming surgery, so that providers knew what they were examining and how to care for the patient. Continue learning; if you don’t know something, find out the answer, and apologize if you make a mistake. As one community adviser recently said in a training we hosted, “Don’t be weird.” Treat your patient with the same compassion and respect as your other patients, but also pay attention to their correct name, pronouns, and social supports. Ask questions that are clinically relevant, and not out of personal curiosity.
If it could change the treatment plan for any reason, know your patient’s exogenous and endogenous hormone balance, their natal and present organs, and their past surgeries. Drive treatment planning based on those clinically relevant characteristics — so if a patient has breast tissue and is over age 50, recommend breast screening (mammography, or ultrasound if mammography is not feasible).
Examine policies that may be exclusionary or off-putting to ensure everyone has access to care, and champion system changes — including intake forms inclusive of name and pronouns, sexual orientation, and gender identity. Our I Want You to Know Card tip sheet is a tool for this. Make sure electronic health record templates have a place to collect sexual orientation, gender identity, present anatomy, and past surgeries — and train and monitor providers to systematically collect these data. In a recent study I co-authored in Oncology Practice, we found that less than half of respondents reported collection of these data in oncology practices. Enforce a zero tolerance for discrimination or denial of care. And finally, learn about trauma-informed care, since so many of us come into health care settings with a history of trauma.
The other elephant in the room is universal health care — universal, high-quality, high-coverage, low-cost health care. This is a necessary, but not sufficient, factor to achieve health equity. In the absence of universal, comprehensive, high-quality care for all, physicians must advocate for patients. For transgender men with breast cancer, this may mean ensuring that chest reconstruction after surgery is coded as just that — reconstruction — and not gender affirming surgery, which is less likely to be a covered service. It may mean knowing and using Medicare billing codes to smooth insurance coverage for those whose gender marker does not match critical cancer screening procedures and appealing to private insurance companies to ensure that claims are processed for critical procedures (note: Code 45 for Medicare).
Overall, the best thing health care providers can do is think about what system-level and structural changes need to happen to provide quality, affirming care to LGBTQI patients and then champion those changes until they happen. Health outcome inequity will only get worse if we do nothing. There is no neutral stance. We all have to be part of that change.