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.
In the absence of a cohesive federal strategy, significant variation evolved on a municipal and state-by-state basis.
For example, although Raleigh and Durham counties issued mask mandates by April 2020, a North Carolina statewide order was not instituted until months later (November 2020).
Public health scholars cautioned that policy variations on municipal, county and state levels may contribute to worse spread of disease – particularly in the absence of a cohesive federal strategy.
As regulations evolved across the nation, access to diagnostic and therapeutic technologies evolved along lines of race, ethnicity, language, and rural/urban residential status.
Oft-beleaguered as inefficient in care delivery,
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.
Further, national lack of personal protective equipment required limiting usage, influencing the surgeries being performed and personnel permitted in the hospital.
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.”
Guidelines for the clinical care of patients with TGD urge an interdisciplinary management team, including medical, surgical and behavioral coordination.
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.
TGD persons are five times more likely to be living with HIV compared to the general population and therefore may have a compromised immune system.
National data shows 28–30% of TGD people report harassment in medical settings, postponing medical care when sick or injured to avoid discrimination.
LGBTQ people use tobacco at a rate of 50% higher than the general population; COVID-19 infection causes a respiratory illness that may be especially harmful to smokers.
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.
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.
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
; data rendered via sunburst diagram, after Moraliyage et al.
Table 1Demographics of study participants.
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).
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.
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.
Several months into the pandemic, the U.S. federal government revoked protective healthcare rights for members of TGD communities.
The year’s highest-volume of crisis calls per month to the Trans Lifeline were reported following that revocation.
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.
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.
Recent oncology studies have shown the impact of pandemic-cancellations of screenings for breast and colorectal cancer (which together account for about one-sixth of all cancer deaths).
Estimates project an increased mortality by 1% over the next decade or 1 million more deaths from these diseases. 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).
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.
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.
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.
One recent analysis shows that reinstatement of limits on out-of-state practice may disproportionately affect healthcare access in rural areas,
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,
our data and the principles of intersectionality,
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.