Unique Issues Facing Sexual and Gender Minorities in Cancer

While the sexual and gender minority (SGM) cancer field is still marked with massive data gaps, research has matured significantly in recent years, providing greater insight into the barriers and challenges experienced by this population. Not only are risks of cancer for the population higher, but this population also experiences low access to tailored resources and ultimately lower satisfaction with care after treatment (1–3). There has been a noted uptick in desire for specific professional strategies to better serve this population; requests for technical assistance from the National LGBT Cancer Network on this point have more than doubled in the past 1.5 years. Still, even though some strategies are very easy for offices to implement, the current state of the field is one of high need and low action. This article will review issues related to this population, including changing demographics, no presumption of care, other access to care barriers, systematic data suppression, and then the lack of population-specific cancer research. It will also review the first step in building a more welcoming clinical practice and give resources for additional steps.

For several decades, the estimated number of SGMs stayed constant, but in the last decade, this has started to shift quickly. The current best available data on prevalence comes from a full probability Gallup survey (4). In 2012, they first published their prevalence data, finding that 3.4% of U.S. adults identified as lesbian, gay, bi, trans, queer, intersex, asexual, plus (LGBTQIA+). By 2022, this number had more than doubled to 7.2%. A generational shift in identification is driving this change, with about one in five of the youngest adults now identifying as LGBTQIA+. The GLSEN youth survey gives us an insight into another key population trend, with about two thirds of the 22,000 LGBTQIA+ youth identifying their gender identity as trans, nonbinary, or questioning (https://www.glsen.org/sites/default/files/2022-10/NSCS-2021-Full-Report.pdf). This contrasts with less than 3% of the oldest adults in the Gallup survey identifying as trans. While cancer is a disease of aging, minimizing cancer risks starts with healthy behaviors in the teen years. Thus, while SGM-tailored competencies (such as being conversant with population health risks or using “they” as a singular pronoun) are still relatively rare, the need for them is increasing as the population expands. Unless we can address this gap more effectively, the cancer community will increasingly become further out of sync with SGM community members’ needs.

Potentially, the largest gap in provider knowledge related to the health experiences of the SGM population is the presumption-of-care gap. Non-SGM persons have no reason to think a provider will refuse to treat them simply because they are cis or straight. In contrast, since at least the early 1990s when the Religious Freedom Restoration Act was passed, policies allowing providers to refuse care to SGMs based on religious beliefs have been debated frequently and occasionally implemented at the federal and state levels (5). This has put patients at great risk. For example, many providers used to hide a patients’ trans status on records to avoid discrimination (for example, by using a vague diagnostic category such as “Endocrine Disorder, Not Otherwise Specified”). This changed when an Obama-era Affordable Care Act–linked policy explicitly countered trans discrimination (6). This change ushered in a new era of disclosure of trans status on records but ultimately was short-lived. President Donald J. Trump countermanded this protection and simultaneously increased protections of religious-based refusal of care (6). Thus, trans patients were newly exposed by having their trans status on their records, and had no route to remove it. Even as President Joseph R. Biden moved back to Obama-era protections, this still does not counter the estimated 13% of the U.S. SGM population still put at risk by state “religious freedom” laws related to health care denial (https://www.lgbtmap.org/equality-maps/religious_exemption_ laws). To further exemplify this phenomenon, the ever-increasing wave of predominantly anti-trans bills introduced each year in state legislatures—more than 400 in the first 3 months of 2023 (7)—include many that focus on restricting care options for trans youth, including one recently introduced in Florida that is so broadly worded one media outlet has opined it could be interpreted to hinder access to cancer-related mastectomies (8). To summarize decades of legal and policy debate on this issue, SGM persons have no presumption of care and, like many overlapping disparity populations, also have no presumption of respectful treatment.

Given no presumption of care and the less drastic but more prevalent no presumption of respectful treatment phenomenon, one might think providers aware of this issue would find a way to counter this history by positively stating a commitment to equal care for this population. Available information shows such a commitment to equal care is still optional and too often completely missing. While NCI-Designated Cancer Centers are arguably the best state-of-the-art cancer care facilities in the country, research shows over a quarter do not even have sexual orientation or gender identity protected in their posted nondiscrimination statements or patient bills of rights (9). In 2022, the National LGBT Cancer Network did our own online analysis of any visible indication of welcome among the patient-serving NCI cancer centers and found that almost one third still had nothing we could find online. What results is a population that struggles to understand where to find safety in the health care world. In response, some SGM people have developed innovative techniques to understand where they might be welcomed. According to “Out: The National Cancer Survey,” some of the strategies patients used included getting referrals from friends, checking for welcoming signage, and even evaluating clinics’ in vitro fertilization policies (http://cancer-network.org/out-the-national-cancer-survey).

It is to be noted that experiences with welcoming care are extremely variable, and the least positive outcomes often cluster among gender minorities or people of color. When one cancer survivor was asked why she seemed so unaffected by the doctor informing her that he did not want to treat her because he felt she was “going to hell due to her lifestyle” (P. Chambers; NCCN Patient Advocacy Summit: Best Practices and Policies for Addressing the Health Needs of LGBTQ+ Cancer Patients and Survivors; December 2, 2022), her response was that as a Black woman, she had gotten used to this treatment. She further said that she was grateful to have it expressed outright, because it was too often silently woven into her care.

Once the phenomena of no presumption of care and no presumption of respectful treatment are understood, it is easier to explain the many layers of access-to-care barriers experienced by the SGM communities. Research shows SGM people are less likely to have a medical home than non-SGM persons (http://lgbtqprimarycare.com/chapter-1/understanding-sgm-health-and-healthcare-disparities). This leaves SGM people less likely to be in the type of relationship with health care providers in which they can urge the patient to get prophylactic cancer screenings or to address personal cancer risk behaviors. Even if SGM people do have a medical home, many types of cancer screenings require going to a new provider (i.e., radiologist, gastrointestinal specialist), and any work that has been done to build rapport and welcome with a primary provider is reset when moving to a new office. These handoffs likely lead to a drop-off in care for some; others may use those innovative strategies to decipher if care is safe. Many of the most vulnerable in the SGM communities are likely on high alert throughout the clinical interactions for overt or masked signs of discrimination. As a population that has been discerning signs of social safety all of our lives, we have a high aptitude for finding even the smallest sign of welcome. There are so many ways for a provider's office to signify such welcome, among them: having openly SGM leadership and staff, displaying inclusive nondiscrimination statements, partnering with local community-based organizations, asking preferred names, asking pronouns, displaying inclusive health promotion materials, adding pronoun pins to lanyards, allowing staff to have rainbow flags on lanyards, displaying welcoming signage, and collecting SGM status on intake. Still, these strategies are not widely utilized (10).

These barriers are multiplied if a patient moves into active cancer treatment, when the number of providers they see in a short time can increase drastically. In some cases, this means patients having to gird themselves to ongoing disrespect. In the words of one of the trans cancer survivors we work with, “I had to choose which was more important, getting respect or staying alive.”

It is not yet standard practice for sexual orientation and gender identity (SOGI) data to be collected on intake. Even though it is much more common to see SGM status asked on federal health surveys, it is still not standard practice in that arena either. There are a number of reasons why this data suppression is notably hobbling the identification of, research into, and elimination of SGM people's health disparities. Categorical analysis of disease surveillance systems is the first step in the process to address health disparities. Why are we reliant on an occasional Gallup poll to monitor SGM prevalence in the U.S. population? Because the federal population surveillance instruments that would normally provide this benchmark only sporadically collect SGM status. Why is cancer outcome information for the SGM population extremely limited? Because absent the routine inclusion of SGM status in health records, it cannot be abstracted into cancer registries. As a result, much of our cancer outcome information must come from survivor surveys, with no method for countering the survival bias inherent in these datasets. Just as all inquiry begins with data, further research is dependent on high-quality data. How can SGM cancer researchers build the most competitive class of health proposals (e.g., for NIH or American Cancer Society) when researchers interested in other populations will always be able to marshal higher quality data for their needs statements? Data is the engine that drives resources in the health world. Lack of it hampers SGM cancer research at every level.

In 2022, the NCI made a number of minor supplemental awards to the P30 grant recipients (i.e., NCI-Designated Cancer Centers) to begin or augment SGM data collection at their institutions. The National LGBT Cancer Network knows of at least a dozen cancer centers that are currently advancing this work and has been providing technical assistance to seven cancer centers directly on this point. This is one of the most exciting shifts the National LGBT Cancer Network team has seen in the SGM cancer world in many years, and it is our hope that nonparticipating cancer centers will be moved by the peer progress to catch up.

Providers are stymied in many ways from accessing evidence-based information on how to properly care for the SGM population. Population-tailored information is scant or nonexistent in many medical school programs, and that results in many providers not feeling ready to treat the population (11). This lack of knowledge manifests itself in a variety of different ways. Sometimes it is not identifying risk factors and clusters of cancers, such as occurs when a human immunodeficiency virus–positive SGM man complains about throat or anal pain, and the provider does not know enough to suspect human papillomavirus–related throat or anal cancer. Sometimes it hinders assessment, such as when a provider does not know how to conduct an anal Pap smear. Sometimes it hinders patient resources, such as when providers cannot point to tailored health promotion or support resources for a specific SGM population. Sometimes it hinders the arc of healthy recovery and survival strategies, such as when a provider can find no information about anal insertive sexual performance after prostate cancer treatment.

Perhaps the largest gap in information related to clinical interactions is for hormone-interactive cancers and trans/gender-nonconforming (TGNC) people (3). For TGNC people, there are three foundational interventions that usually comprise gender confirming care: The rarest is surgery; the second most common is psychotherapy; and then the most common, since it often extends across a person's lifetime, is hormone therapy. This lack of research means organizations preparing clinical guidelines have no evidentiary basis for including screening or treatment protocols related to trans people. Thus, screening and treatment protocols are individually determined by providers. One of the survivors who works with the National LGBT Cancer Network exemplifies the challenges related to this research gap. As they were beginning their transition process, they were diagnosed with a hormone-interactive cancer. Lacking research into the specific risks of continuing masculinizing hormones, the doctors took a conservative approach and unilaterally took the patient off all exogenous hormones. Not only did the patient then have to face a sense of betrayal that the providers made this decision without them involved, but they also had to face the bigger challenge that without hormones, their physical presentation stayed rooted in their sex assigned at birth. Ultimately, the patient chose to not socially transition as a result, and instead of using the desired male pronouns, chose to use nonbinary pronouns. This is a sadness in their life (D. Kivel; YouTube video “Dana's Experience”; March 23, 2022).

The National LGBT Cancer Network created a set of best and promising practices on SGM engagement that was cosigned by more than 30 public health professionals in 2007 and has been updated every few years to this day (12). While the practices were originally developed for state health departments, they have worked equally well when applied to direct health care organizations. The first of the seven strategies was to build welcome and express value for SGM employees in the workplace. The reason this was rated the most important strategy was because it not only helps accelerate internal capacity to review systems but also has such a cascade of effects on patient-facing interactions. Activities to help achieve this strategy include the following:

• (i) Implement robust-enough diversity, equity, and inclusion strategies that this key employee group understands it is not just welcomed but professionally valued for this additional dimension it brings to the workplace.

• (ii) Professionally acknowledge that these employees are rare population subject matter experts.

• (iii) Build in work time to leverage this in-house expertise to review and enhance organizational practices for this population.

• (iv) Counter all signs of a hostile employee climate immediately, express clearly from management on down the professional expectation of support for not just SGM but all underrepresented minority employees.

• (v) Understand that seeing proud and thriving SGM employees is a clear message to patients that SGM people are welcome, and beyond that can also be a valued support for patients experiencing microaggressions or macroaggressions.

The value of nurturing staff expertise in and champions for health disparities is significant. In our many years work in this area, organizational change has most often been driven by staff champions. This is evident to patients as well. Consider briefly the difference between being treated at any of the many cancer centers that stay moot on the point of SGM welcome versus being treated at Cleveland Clinic, which has an Office of LGBT Health. In one environment, there is nothing communicated about safety; in the other, there is clear communication that this is a valued population and the organization has invested in equitable care for SGM persons.

Once an organization has addressed this step, it creates a solid foundation for further movement. The next three steps on the best and promising practices list are: (i) ensure community advisers are involved in policy decisions (i.e., via a community advisory board); (ii) collect SOGI data on surveys and health records; and (iii) ensure staff have cultural humility training (e.g., via the Welcoming Spaces online SGM cancer training series at https://cancer-network.org/welcoming-spaces/). Progressing through these three steps will teach leaders important lessons about where their organizational policies and systems are and are not working to reach this vulnerable population, as well as build needed momentum for further progress.

The SGM population experiences layers of social phenomena that intersect negatively with healthy behaviors, cancer screenings, care, and ultimately survivorship. The cancer field is arguably at the forefront of precision medicine, and it is a well proven concept that care must be tailored to individual factors affecting each patient. Yet despite the complementary nature of these two phenomena, cancer providers are still too often not tailoring any activities to counter the historic discrimination the SGM population faces. The full impact of this one-size-fits-all approach is likely underestimated due to systemic suppression of data of SGM communities, which inhibits both quantification of the magnitude of disparities and progress toward eliminating those disparities. Particularly in light of the constant level of negative headlines arising from the slate of anti-LGBTQIA+ bills, it is time for the cancer community to take greater responsibility for the negative effects of their silence and to take actions to convey and ensure SGM welcome in screening, care, research, clinical trials, and survivorship.

NFN Scout reports grants from the Centers for Disease Control and Prevention during the conduct of the study.