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During the pandemic, our cohort of transgender and gender-diverse patients reported delays in all domains of gender care.
Nearly one-third of patients still cite discrimination as a barrier to accessing urgent care facilities.
Increased access to telemedicine was reported for gender affirming care, playing a key role in patients' health and wellness during the pandemic.
Gender-affirming healthcare is vital for transgender and gender diverse (TGD) patients, and during the pandemic, accessing healthcare became challenging. Hypothesizing that many had procedures postponed, we sought to characterize the impact of the pandemic on TGD patients.
A mixed-methods approach was employed, combining surveys and interviews; Duke patients were identified by ICD-10 codes, while non-Duke (national) patients were recruited through online social media.
All specialties increased telemedicine usage during the pandemic. Duke surgical patients reported a nearly three-fold increase in telemedicine access. COVID-19 symptoms were reported by 24% of Duke and 20% of national patients; barriers to urgent care included the fear of discrimination (27%).
Delays were experienced in all domains of care, mitigated in part by telemedicine. Nearly one-third of patients cite discrimination as a barrier to care. Though pandemic-related expansion of telemedicine may be a marker of success, significant barriers still complicate delivery of healthcare.
The COVID-19 crisis may be the most clinically significant pandemic of the past century; its impact and magnitude has been compared to the Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome (HIV/AIDS), particularly in queer health and global health.
In the United States, persons at the margins of society including Black, Latinx, lesbian, gay, bisexual, transgender and/or queer (LGBTQ) individuals and persons with inadequate access to food, clothing, shelter or healthcare have been shown to be particularly high risk.
As the pandemic began in the spring of 2020, U.S. governors began issuing ‘stay-at-home’ orders. In North Carolina, this occurred March 30, 2020, mandating all nonessential workers remain at home to mitigate the spread of COVID-19.
The pandemic transformed education, employment and healthcare, forcing most institutions into a teleconferenced economy that found some industries less prepared than others. Healthcare delivery has been no exception, with some sectors responding proactively to develop telemedicine access, whereas other aspects of care (procedural) have been more limited. As one example, the Veterans Administration healthcare system invested $39 million early in the pandemic, increasing telemedicine by 1000% compared to pre-pandemic figures.
such investment from the VA deserves special commendation, a seminal example of how even large organizations can make agile policy changes when exigent. Other organizations responded by working to triage scarce resources: as part of a national risk-mitigation strategy, the American College of Surgeons (ACS) recommended postponing procedures based on urgency.
For example, repair of a non-incarcerated inguinal hernia was defined as elective, to be deferred when feasible. As understanding of COVID management improved medical institutions learned to adapt, evolving a tiered system to schedule elective and non-elective cases according to the level of harm that delaying surgery would cause patients. In March 2020, the American Society of Plastic Surgeons (ASPS) joined the ACS to advocate for cessation of elective or non-essential services to reduce the heightened risk of spreading COVID which could lead to thrombotic episodes in patients of all ages.
Subsequent guidance from ASPS (August 2020) espoused a triaging system, recognizing “urgency/elective status of a procedure may depend on specific patient circumstances that will necessitate the clinical judgment of the surgeon.”
A wide variety of specialties comprise these gender affirming interdisciplinary care teams that specialize in behavioral care for gender incongruence, medical care for hormone prescription and monitoring hormone levels, perioperative care and gender affirming surgery. Indeed, COVID-19 presented the capacity to disrupt all aspects of care for transgender and gender diverse (TGD) patients.
Available literature regarding COVID-19 indicates patients with pre-existing comorbidities such as diabetes, cardiovascular disease, liver disease, and immunocompromised persons are at high risk for severe illness from COVID-19.
The purpose of this study was to assess the impact of the pandemic on TGD patients, specifically regarding access to telemedicine and delays in gender-affirming healthcare. We hypothesized patients awaiting gender-affirming surgery may have had procedures postponed, and sought to characterize delays while identifying recommended temporizing strategies.
The Duke University Institutional Review Board approved all study materials in June 2020. Eligibility criteria included identifying as a TGD patient, aged 18 years or older and able to read English. The lead authors developed the survey tool in collaboration with LGBTQ members of the medical and nonprofit communities; questions were tested in focus groups to optimize diction. The study was hosted on an encrypted platform (Qualtrics, Seattle, WA) and included demographics (gender identity, race, ethnicity, HIV status), types of gender affirming healthcare pursued, respiratory symptomatology, access to urgent care for COVID-19 concerns, access to telemedicine visits for hormones, surgery and mental health and any postponements of care. Patients were permitted to select multiple options for gender, race and ethnicity. Behavioral information was solicited including whether they used medications to prevent HIV and active tobacco smoking. Patients were asked whether their health insurance permitted telemedicine access to gender-affirming healthcare before the pandemic, and if access was expanded after their state's COVID-19 stay-at-home order. Following the survey, participants were invited to take part in a semi-structured interview.
The survey was sent to all patients within the Duke Health network whose medical records carried an ICD-10 code for gender identity diagnoses: F64.0-F64.9 (gender identity diagnoses) and Z87.890 (history of sex reassignment) after identification using the DEDUCE platform (Duke Health, Durham, NC).
Patients were notified via MyChart (Epic, Verona WI) in June 2020. Duke colleagues who care for TGD individuals were engaged prior to study rollout, so they could refer any questions to study personnel. These included providers from the Departments of Family Medicine & Community Health, Psychiatry & Behavioral Sciences, Adult and Pediatric Endocrinology, Obstetrics & Gynecology and Plastic & Reconstructive Surgery.
For the national cohort, the survey was advertised via Facebook, Instagram (Menlo Park, CA) and Twitter (San Francisco, CA) beginning in September of 2020 for respondent-driven sampling of TGD communities across the United States (Supplementary Figures S1-S2).
Study personnel also advertised the project through communication with nationwide LGBTQ healthcare and nonprofit workers via email, text messages and an IRB-approved website hosted at sites.duke.edu/transgenderhealthcovid. Survey data collection ended in December 2020. Between December 2020 and January 2021, telephone interviews were conducted by lead authors with participants who indicated in the survey their willingness to be contacted. A semi-structured interview script was developed with advising from LGBTQ researchers; participants were permitted to expound on topics they deemed most important (Supplementary Figure S3). Data was analyzed among the Duke Health cohort with the national cohort, comparing the survey parameters as two distinct groups, but without statistical analyses of variance. The lead authors reviewed the interviews using thematic analysis methodology
A total of 253 TGD patients (164 Duke Health, 89 national) responded to the survey. Fig. 1 shows the home location reported by study participants nationwide (Panel A) and within North Carolina (Panel B). Table 1 summarizes the demographic information for the two cohorts. The Duke Health cohort had an average age of 42 years, while the national cohort had an average age of 33 years. Of the Duke Health cohort, 33% identified as trans women, 13% as gender non-conforming/non-binary and 21% as trans men. Of the national cohort, 18% identified as transwomen, 26% as gender non-conforming/non-binary and 25% as transmen. The majority of participants (74% Duke Health, 61% national) identified racially as non-Latinx white. The majority of participants (71% Duke Health, 54% national) had private insurance. Duke Health patients reported higher utilization of all healthcare services (63% medical/hormonal, 55% surgical and 43% behavioral) compared to the national cohort (44% medical/hormonal, 17% surgical and 42% behavioral). For both cohorts, 8–9% reported currently smoking.
Participants reported that all gender-affirming medical providers (medical, surgical, behavioral) had increased availability via telemedicine during the pandemic (Fig. 2). Supplementary Table S1 presents an overview of participants’ access to telemedicine before and after the COVID-19 pandemic. Before the start of the pandemic, Duke Health patients reported having fewer telemedicine options when compared to the national cohort. Regarding surgical healthcare, Duke Health patients reported the lowest percentage of access to telemedicine before the pandemic (9%). After the start of the pandemic, Duke Health patients reported increased access to telemedicine for medical and surgical specialties (medical specialties: pre- 27%, post- 68%, 2.5x increase; surgical specialties: pre- 9%, post- 24%; 2.7x increase). Patients in the national cohort and the Duke Health cohort both reported increased availability to telemedicine options for behavioral health (from 36% to 81%, from 36% to 67%, respectively).
A total of 41 Duke patients and 42 national patients reported delays in their care (Fig. 3, Supplementary Table S2). Behavioral health had the highest percentages of delays in care (34% of Duke Health participants, 75% of national participants). For both national and Duke Health cohorts, surgical clinics had the lowest report of delays in care (4% of Duke Health participants, 11% of national participants). In regard to surgical procedures, 17% of Duke Health patients reported delays, while 40% of 15 national patients reported delays. The surgical procedure most sought by the Duke Health cohort was vaginoplasty (35% of Duke Health patients), while the most-frequently sought surgery in the national cohort was chest wall reconstruction/mastectomy (33% of national patients) (Supplementary Table S3). Delays in medical/hormonal therapies were reported by 7% of Duke Health patients, whereas 36% of national patients reported delays in gender-affirming hormonal therapy.
Participants were asked if they had experienced COVID-19 symptoms in the preceding two weeks (fever, cough, dyspnea, fatigue, loss of taste/smell); symptoms were reported by 24% of Duke participants and 20% of national participants (Supplementary Table S4). Patients were asked if they knew of an urgent care facility to seek medical attention; 90% of participants in both Duke Health and national cohorts responded affirmatively. However, when asked about specific barriers to accessing care at these urgent care facilities, 27% of patients described discrimination as a factor that might impede their medical care.
The most common barriers nationally and at Duke Health to seeking medical care included financial strain (32% at Duke Health, 27% nationally), fear of discrimination (27% at Duke Health, 27% nationally), and uncertainty on where to seek care (23% at Duke Health, 27% nationally) (Supplementary Table S5). When asked about the influence of the pandemic on their lives, the most common concern for Duke Health and national cohorts was that COVID-19 might delay aspects of their gender healthcare (23% at Duke Health, 18% nationally). In interviews, Duke Health patients were concerned about losing insurance due to job insecurity, delayed surgical visits and being discriminated against at medical facilities if feeling acutely ill (Fig. 4). Other common themes included the unexpected but welcomed privacy that quarantining and work-from-home had provided some “a small silver lining of getting to hide from society as their body changes,” in the words of one interviewee.
In our study, healthcare delays were reported by patients in all domains of gender-affirming care, however, these challenges were mitigated in part by improved telemedicine access. This is laudable, reflecting the response of healthcare and LGTBTQ nonprofit workers nationwide, including urban, suburban and rural regions (Fig. 1). Our data shows delays in gender-affirming medical care were most commonly-reported for behavioral health, consistent with descriptions by Holmes et al., (2020)
of mental health disease burden due to COVID. The global uptick in mental illness during COVID paired with the overall lack of gender-affirming behavioral health professionals and access to specialized care perhaps led to this finding of behavioral health having the greatest delays.
This is concerning, as various studies have shown pandemic-related stresses play a role in unmasking subclinical disease and destabilizing patients with mood disorders, anxiety or other neuropsychiatric conditions.
For already-marginalized populations, such impact is amplified through the experience of intersectionality—systems of oppression that together negatively impact the health outcomes for multiply-minority populations, such as Black and Latinx transgender women (the group of TGD individuals most-likely to die by homicide in 2020).
With the development of COVID-19 vaccines, our patients report looking forward to a post-pandemic world, eager to return to previous modes of working, traveling and socialization. However, experts urge caution as the distribution of vaccines, their efficacy, vaccine hesitancy and the prevalence of immunocompromised persons may delay herd immunity.
Several authors have shown such issues are magnified by extant health disparities; in the Global South, marginalized racial and ethnic groups have been shown to have less access, and more hesitancy to, available vaccines.
Similar issues will likely impact marginalized groups within the United States, including TGD persons; it will be important to keep all such at-risk patients engaged in the healthcare system to improve vaccine uptake and reduce morbidity and mortality due to COVID-19.
Nearly one-third of patients surveyed in the present study cited discrimination as a barrier to accessing urgent care facilities, which is in keeping with pre-pandemic reports of TGD health.
While pandemic-expansion of gender telemedicine is encouraging, significant barriers still complicate healthcare delivery. In “An Epidemic of Violence: Fatal Violence Against Transgender and Gender Non-Conforming People In the U.S. in 2020” the Human Rights Campaign reported that 2020 was one of the deadliest years on record, with 44 TGD individuals dying due to anti-transgender violence, an almost two-fold increase from the 25 violent deaths in 2019.
The survey for the present manuscript was dispersed in the weeks following that federal announcement, which was cited by interviewees as an issue of concern. Such reports highlight vulnerabilities of marginalized populations and the importance of risk-mitigation strategies, including improving access to gender-affirming telemedicine.
As gender-affirming surgical interventions occur in a planned (“elective”) setting, these procedures were among procedures cancelled/postponed due to the pandemic. Healthcare providers in gender affirming care have raised concerns with delaying care for patients of TGD experience.
Treatment for gender incongruence (GIC) requires a multidisciplinary approach, including mental healthcare, medical and surgical providers in various specialties, and GIC, when untreated or undertreated, has the potential to lead to increased suicidality and self-harm.
Delays in treatment can be dangerous as suicidality remains a high risk during treatment. For some of the most vulnerable TGD patients, gender affirming surgery has shown to improve adherence with HIV treatment and decreased viral loads.
Furthermore, lack of surgical clinic follow-up care prevents appropriate assessment of wound complications; a paucity of research limits the understanding of the negative effects of abrupt cessation of hormonal therapy.
Flaherty et al. (2020) weighed the ethics of delaying “elective” procedures, concluding that due to the unique characteristics of GIC and threatened stigma against TGD, gender affirming surgeries should not be delayed during the pandemic.
The fact that a procedure is classified as elective does not necessarily mean it can be delayed indefinitely without negative health consequences. One class of elective procedures that were curtailed during the pandemic included screening colonoscopies.
These data demonstrate at-risk individuals with delayed access to care are being diagnosed with disease later, and with higher staging due to pandemic-disruptions. The lack of national data linking delays in gender-affirming healthcare and the development of negative outcomes should be considered as a call-to-action, advocating for more research on the health effects of delayed care for TGD patients due to the pandemic (and/or other stressors).
Our method of using an electronic health record cohort (Epic) for Duke patients, paired with a social media-targeting was designed to generate local- and national-level data. Whereas our Duke Health cohort was chosen prospectively by machine learning techniques (identifying individuals already ‘out’ in medical records), our nationalized data system relied on voluntary self-reporting by TGD-identifying persons who use social media. Of note, ‘Duke patients’ were recruited through Duke MyChart messages; the cohort of ‘national’ patients was accrued via social media, and did include some locally-residing patients in North Carolina who got their healthcare at non-Duke entities. Therefore, issues of recall bias and selection bias may be limitations. As such, we have deferred performing statistical analyses, in favor or descriptive and qualitative analysis. A limitation of our study is the racial diversity of our cohorts, which contained 3–4% self-identified Black persons and 7–10% self-identified Latinx/Hispanic persons. These numbers are significantly lower than North Carolina (22% Black, 9.8% Latinx/Hispanic) and national (13% Black, 18.7% Latinx/Hispanic) averages.
Despite efforts at targeted recruitment (collaborations with community leaders and activists in those groups) we were not able to accrue sufficient numbers for subgroup analyses. Our national and Duke sample sizes are smaller than many cross-sectional study surveys. This can be attributable to the difficulties outlined by Hughes et al. (2016) of sampling and adequate sample size acquisition, in which TGD patients tend to be underrepresented in research due to stigmatization.
The sample size does reduce the power of the study, yet despite these limitations, our data provides an important perspective on pandemic-era TGD health issues.
While the pandemic has led to global hardship, there are a few unpredicted and positive findings, such as the benefits of telemedicine in rural areas and the body-transitioning privacy afforded by quarantine. This is tempered by the reality that the privilege to work-from-home correlates with socioeconomic status, and is a privilege not uniformly available to those most at-risk for poor COVID-19 outcomes (such as Black and Latinx TGD persons).
Additionally, although some procedures must be in-person, mental health services and routine follow-ups were successfully performed. Following the resolution of the COVID-19 pandemic, we advocate for a continuation of this “blended-care” model for TGD patients as an effort to increase accessibility.
Both brick-and-mortar and telemedicine gender clinics greatly expanded their catchment areas since the pandemic, with some including access across state lines.
Early in the pandemic, state licensure requirements were eased to permit access to interstate telehealth including Medicare. However, at the time of writing, those easements have expired in several states, including Alabama, Mississippi, Louisiana, Florida and Georgia.
which we posit could be compounded for multiply-marginalized populations, such as TGD persons in the rural south. However, that study did not include subgroup analyses for gender-affirming healthcare, and a limitation of our own study is we did not use Medicare claims to analyze interstate gender affirming telehealth. Nonetheless, based on that work,
we hypothesize that loss of telemedicine access for TGD persons in the rural south will have disproportionately negative effects. Indeed, in our own gender-affirming surgical practice we are already encountering out-of-state patients unable to secure insurance coverage due to these changes. Access to telehealth can be life-changing for patients outside of urban centers where there is limited gender affirming medical care. We will continue to advocate for maintaining telehealth access for rural and/or TGD individuals with limited local options, and call on our colleagues for further scholarship in the emerging, intersecting fields of telemedicine, TGD studies and health disparities.
When COVID-19 forced the world to shut down, our study reveals that TGD individuals were obliged to change their expectations of healthcare and their life-priorities. This exists alongside the intersectional threats to their health, wellness, and very existence. Thankfully, the data shows that healthcare systems in North Carolina and nationwide are shifting towards more telemedicine, and urgency-based triaging in surgical scheduling. At Duke, gender affirming surgery has returned to the same volume as before the pandemic, albeit with new precautions (masking, rapid testing, visitor screening) that also apply to patients undergoing any other surgery. Equal access to healthcare remains elusive for marginalized populations nationwide, whether cisgender/transgender, rural/urban, non-native English speakers or undocumented immigrants; yet our study presents important leading indicators that better healthcare delivery is possible when unified actions are taken, even during a global pandemic.
Delays were experienced in all domains of gender care; however, these challenges were mitigated in part by improved telemedicine access. Nearly one-third of patients cite discrimination as a barrier to accessing urgent care facilities, which is in keeping with pre-pandemic reports of TGD health outcomes.
Although the pandemic-related expansion of gender telemedicine may be a marker of success, significant barriers still complicate delivery of healthcare to TGD patients.
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
In this national cross-sectional cohort survey study of 253 TGD patients, telemedicine options increased between 14 and 48% at Duke Health and nationally due to the COVID-19 pandemic, yet 34–75% of nationally surveyed patients reported delays in treatment from gender affirming healthcare providers in Behavioral, Medical and Surgical specialties.
For his assistance in formulating the qualitative interview tool, the authors wish to thank Dr. Michael Vaughn PhD, Postdoctoral Fellow at the HIV Center for Clinical and Behavioral Studies at Columbia University. For her assistance in ArcGIS analytics, the authors wish to thank Mx. Lauren Harper, MA of the University of California Los Angeles Luskin School of Public Affairs. The authors wish to recognize the following LGBTQ advisors for their guidance in developing survey tools: Mx. Ebony West, BS, MPA of The Democracy Fund in Washington DC; Dr. Kevin Steehler, MD, MPH of the University of Washington at Seattle; Dr. Ashley Urrutia, MD, MPH of Emory University in Atlanta, Georgia. The authors also wish to thank Amelia Kloer for her design and production of the graphic arts used in advertising the study on social media.
Appendix A. Supplementary data
The following are the Supplementary data to this article: