Gender Diverse Individuals and Clinical Preventive Services: Addressing Access to Treatment and Healthcare Experiences of LGBTQIA+ People
With more than 11 million individuals in the United States identifying as LGBTQIA+ (lesbian, gay, bisexual, transgender, queer, intersex, asexual, or something else), it is vital that healthcare providers better understand their healthcare needs and experiences so that the barriers to care and access to healthcare services encountered by LGBTQIA+ persons can be addressed. Studies cited by the Kaiser Family Foundation (KFF) have shown that LGBTQIA+ individuals experience certain health challenges and reduced access to care at higher rates than their non-LGBTQIA+ counterparts. Moreover, the National Institutes of Health has identified sexual and gender minorities as a “health disparity population” to encourage and support research in this area.1
Guidance about addressing sexual orientation and gender identity in clinical preventive services and how gender identity affects healthcare access and patient experiences of LGBTQIA+ individuals is also the subject of a recent US Preventive Services Task Force (USPSTF) review.
The USPSTF is an independent panel of experts in primary care and prevention that makes clinical preventive service recommendations based on transparent, systematic, and rigorous methods that consider the certainty of the evidence and magnitude of net benefit. Its recommendations are frequently natal sex-specific, most commonly based on the biological basis of the preventive service (eg, cervical cancer screenings apply to individuals born with a cervix and prostate cancer screening recommendations apply to individuals born with a prostate gland). Sexual orientation and gender identity are sources of diversity that have not in the past been considered in studies of clinical preventive services that inform the USPSTF recommendations, resulting in challenges when evaluating the evidence and communicating recommendations for persons in specific gender identification categories (man/woman/gender nonbinary/gender nonconforming/transgender).
Many people have gender identities that differ from their gender assigned at birth. Transgender people, who were assigned male gender at birth but identify as women, or who were assigned female gender at birth but identify as men, are examples of such individuals. There are also people with gender-nonconforming or nonbinary identities who do not identify as either a man or a woman. USPSTF data report that approximately 1 million people self-identify as transgender or gender nonconforming. The true numbers are unknown because many transgender people live as the gender with which they identify and do not divulge their transgender status.
Transgender, gender-nonconforming, and nonbinary people report barriers to healthcare, including negative experiences in healthcare settings. They report avoiding seeking healthcare because of concerns about being mistreated. Disparities in preventive care such as cancer screening have been demonstrated for transgender and gender-nonconforming people.
The USPSTF recognizes that the language used in its natal sex-specific recommendations needs to be clear and consistent so clinicians and patients can effectively and respectfully apply these recommendations in practice. Going forward, the USPSTF intends to use an inclusive approach to identify issues related to sexual orientation and gender identity at the start of the guideline development process for each preventive services topic addressed. As topics are updated every five years, USPSTF recommendations will seek to be attuned to gender minorities and will improve the clarity of its statements to help clinicians and their patients make informed decisions about preventive care.
The recommendations will use gender-neutral language when appropriate to communicate that recommendations are inclusive of people of any gender, and will clearly state when recommendations apply to individuals with specific anatomy associated with biological sex (male/female) or to specific categories of gender identity.
The USPSTF states that it is critical to be able to use terminology with clear definitions.
- The word sex describes biological attributes commonly associated with specific chromosomes, the effect of particular endogenous hormones, and reproductive anatomy. “Although individuals can change their hormonal levels and anatomy through medical or surgical approaches, sex is meant to identify those individuals who would likely have been assigned a sex or gender at birth of either female, male, or intersex [those who have reproductive anatomy that is inconsistent with the usual definitions of female or male].”
- The USPSTF uses gender terms to refer to identities that reflect how individuals generally perceive themselves with regard to social or cultural norms as men, women, gender nonbinary, or gender nonconforming. Gender identity is not confined to a binary categorization and can exist as a continuum and can change over time. How individuals identify themselves can differ from how others perceive them, based on traditional stereotypes of gender presentation.
When it is not possible to use gender-neutral language, the USPSTF decided it was more appropriate to use gender terms throughout the recommendation statement, even when the service was based on biology. However, the USPSTF developed explicit language in the Patient Population Under Consideration section to make the USPSTF’s intent clear to readers. Individuals should consider their gender assigned at birth to determine which recommendation best applies to them.
When assessing the evidence to make a recommendation, the USPSTF will consider the gender assigned at birth or gender identity basis of the evidence; applicability of evidence to transgender, gender-nonbinary, and gender-nonconforming populations and to intersex persons; variability in the quality of evidence based on sex or gender; and whether the net benefit varies based on sex or gender.
Whenever appropriate, the USPSTF will use sex- and gender-neutral terms. The use of gender-neutral language does not seek to deny or diminish the importance of gender in framing personal and social life, nor does it preclude a synthesis of the evidence that recognizes the unique social, economic, and political factors that influence the health risks to people based on sex and gender. In cases in which the recommendation is to be applied to specific populations based on natal sex or gender, the USPSTF will make a clear statement to whom the recommendation applies in the Patient Population Under Consideration section. In the Practice Considerations section, the USPSTF will review the evidence supporting the basis for a recommendation focused on a specific population defined by biological sex or gender attributes.
The USPSTF intends that these new approaches for developing recommendations attuned to natal sex and gender diversity will improve the clarity of its statements and help clinicians and their patients make informed decisions about preventive care. The USPSTF plans to continue its engagement with individuals and groups with specific expertise in representing these populations to learn how best to formulate recommendations that are gender inclusive, more clearly communicate with regard to sexual identity and gender diversity, and improve understanding of the research gaps. The USPSTF policy statement is a first step in advancing the task force’s methods on these issues. The process is under way or complete for several topics and will continue over the next several years for all others.
The USPSTF commonly identifies evidence gaps for specific populations of patients—even when there is evidence that these populations are more likely to be diagnosed or experience specific preventable conditions. The evidence gaps for preventive services are substantial for transgender, gender-nonbinary, gender-nonconforming, and intersex persons, limiting the ability of the USPSTF to make a specific recommendation. As science and understanding evolve, the USPSTF will remain committed to advancing its processes and methods to further promote equity for all persons regardless of sexual orientation or gender identity. However, until primary studies that inform USPSTF recommendations adopt more nuanced approaches to assessment and reporting on the sexual orientation and gender identity of study participants, there will continue to be gaps in the evidence and challenges to formulating and communicating inclusive clinical recommendations.
The Experiences of LGBTQIA+ Patients
The KFF analyzed nationally representative data from an online survey conducted between November and December 17, 2020, of 4,805 people ages 18 to 64 years, including 492 LGBTQIA+ people, to compare the experiences of self-identified LGBTQIA+ adults with their non-LGBTQIA+ counterparts. Key findings from the KFF survey were as follows:
- The LGBTQIA+ community differs from their non-LGBTQIA+ counterparts in some important ways that have implications for their healthcare needs and access to healthcare.
- LGBTQIA+ adults are younger than non-LGBTQIA+ adults. More than half (59%) are between the ages of 18 and 35, compared with 38% of non-LGBTQIA+ persons.
- LGBTQIA+ adults are lower income and less likely to be married than non-LGBTQIA+ adults. This family structure difference may have bearing on health and insurance coverage.
- LGBTQIA+ individuals more commonly report being in fair or poor health than non-LGBTQIA+ persons, despite being a younger population, and they report higher rates of ongoing health conditions and disability or chronic disease.
- Although LGBTQIA+ persons are as likely to have a usual source of care and regular health provider and to use similar sites of care as their non-LGBTQIA+ counterparts, LGBTQIA+ persons more commonly report that they or a household family member has had trouble paying healthcare bills in the past 12 months than non-LGBTQIA+ persons. Half of LGBTQIA+ individuals who had trouble paying medical bills in the past year have had difficulty paying for basic necessities like food, heat, or housing.
- Utilization of health services by LGBTQIA+ persons compared with non-LGBTQIA+ persons varies considerably:
- LGBTQIA+ women were less likely to report having had a recent mammogram or ever had a gynecological exam than non-LGBTQIA+ women. However, LGBTQIA+ individuals were more likely to report having received other preventive screenings, including for sexual health. This could reflect higher rates of sexually transmitted infections in the community as well as greater awareness of testing.
- One in four LGBTQIA+ persons with health insurance say their preferred provider was not covered by their plan.
- A larger share of LGBTQIA+ people regularly take a prescription medication than non-LGBTQIA+ people across most age groups.
- Larger shares of lesbian and bisexual women have never had a gynecological exam compared with non-LGBTQIA+ women.
- Larger shares of LGBTQIA+ women have used contraceptive implants and emergency contraception compared with non-LGBTQIA+ women.
- Smaller but substantial shares of LGBTQIA+ women report ever being pregnant compared with non-LGBTQIA+ women, and majorities reported giving birth, though miscarriage was also a common experience.
- Seven in 10 LGBTQIA+ people (about 73%) report having a regular healthcare provider, increasing to virtually all LGBTQIA+ people over age 44. Ten percent describe their primary provider as a physician assistant or nurse practitioner.
- In some cases, LGBTQIA+ individuals faced more challenging COVID-related circumstances than non-LGBTQIA+ persons. Quitting a job or taking time off in response to COVID-19 was a more common experience for LGBTQIA+ persons than non-LGBTQIA+ persons.
- Finally, the survey found that a higher share of LGBTQIA+ individuals are seeking mental health care because of the pandemic.
Although in many cases LGBTQIA+ individuals have health and healthcare experiences that are similar to those of non-LGBTQIA+ individuals, there are some notable differences, particularly with respect to some poorer health outcomes and negative provider experiences, as well as lower utilization of care in some cases and a higher burden of medical bills. Health disparities among LGBTQIA+ persons vary across the population and can intersect with factors beyond sexual orientation and gender identity to include other factors, including race/ethnicity, class, nationality, and age.
1. National Institutes of Health Sexual & Gender Minority Research Office. Methods and measurement in sexual & gender minority health research. April 2018. Accessed November 19, 2021. https://dpcpsi.nih.gov/sgmro/measurement