When Stigma,Disclosure,and Access to Care Collide: An Ethical Reflection of mpox Vaccination Outreach

Abstract

Experiences of stigma in health care encounters among LGBTQ+ populations (lesbian, gay, bisexual, transgender, and queer and questioning) have long been a barrier to care. Marginalization and historically grounded fears of stigmatization have contributed to a reluctance to disclose sexual behavior and/or gender identity to health care providers. We reflect on how student nurses grappled with the ethics of patient disclosure while providing mobile outreach in Chicago for mpox (formerly monkeypox) from fall 2022 to spring 2023. Student nurses addressed how requiring disclosure of sexual behavior or sexual orientation may serve as a barrier to accessing preventive care, such as mpox vaccination. Accounts of stigma and criminalization experienced by LGBTQ+ people provide insight on challenges historically associated with disclosure in health care.

Stigma—whether perceived, internalized, anticipated, or enacted—has served as a barrier to HIV testing, HIV preexposure prophylaxis uptake, and, more recently, mpox (formerly monkeypox) vaccine uptake. ¹ The mpox virus belongs to the Orthopoxvirus genus and is the causative agent of mpox infections.^2,3 Mpox infections spread through direct contact with body fluids, skin lesions, mucus membranes, respiratory droplets, and contaminated objects, ⁴ and mpox symptoms usually appear within 3 weeks of viral exposure. Symptoms associated with mpox may include influenza-like symptoms, which likely precede a pimple-like rash or blisters that scab. Although genital lesions were commonly shown during the 2022 mpox outbreak, the symptoms of mpox more typically appear on other parts of the body, such as the hands, feet, chest, face, or mouth. ⁵ The JYNNEOS vaccine (Bavarian Nordic) can be administered prophylactically to people after exposure to mpox and is a 2-part series given 28 days apart. ²

Almost all mpox cases in the 2022 outbreak were among men aged 21-55 years. ⁵ Among people in this age group, most were Black, followed by Hispanic/Latino and then White. ¹ Epidemiologic data on the 2022 outbreak collected before mpox vaccination programs showed that mpox infections, transmitted through intimate skin-to-skin contact, were almost exclusively among men who have sex with men (MSM).^2,3 A global shortage of the mpox vaccine complicated vaccine rollout. The national stockpile did not have enough doses for all MSM, those deemed at highest risk of contracting mpox, to get 2 full doses. ⁶ The strategy evolved from providing the full vaccine schedule of 2 subcutaneous doses 28 days apart to giving at least 1 subcutaneous dose and then 2 intradermal doses, which used a smaller dose but at the same efficacy. ⁷ Changes in eligibility and dosing presented challenges to outreach workers, who were constantly changing their messaging to keep up with current guidelines. ⁸

Understanding how “outness”—public disclosure or openness about one’s sexual orientation or gender identity—intersects with race, stigmatization, health care utilization, and fear of accessing care may help in creating health care encounters that are culturally safe and judgment-free. ⁹ Evidence suggests that structural stigma, such as fear of disclosure, discrimination, or maltreatment, is a barrier to LGBTQ+ people (lesbian, gay, bisexual, transgender, and queer and questioning) who are seeking preventive health care–related services.^10,11 These structures include health care discrimination and, at a larger level, an unwelcoming political climate. ¹² Repeated experiences of stigma result in a high risk of poor health care outcomes. ¹³

Cycle of Marginalization and Access to Care

LGBTQ+ people have been marginalized because of existing societal heteronormativity and cisnormativity. ¹⁴ Marginalization has been perpetuated by internalized homophobia and transphobia, anti-LGBTQ+ sentiment from society at large, and political and societal structures that facilitate oppressive policies and practices. Criminalization of same-sex sexual practices, health care discrimination, and a lack of tailored health care resources for LGBTQ+ needs contribute to the structural marginalization experienced by LGBTQ+ people. ¹⁵ LGBTQ+ people are less likely than those who are cisgender and heterosexual to access health care services, resulting in negative downstream effects on their health. ¹⁶ Internalized stigma among LGBTQ+ people affects their ability to receive routine basic care. ¹⁷ Among older bisexual and lesbian women, anticipated stigma was associated with low health care engagement, including use of mammograms and Papanicolaou tests.^18,19 The combination of stigma, violence, and social and economic exclusion experienced by transgender people negatively affects their access to HIV prevention services. ²⁰ In addition, LGBTQ+ young people with multiple marginalized identities have an increased chance of experiencing minority stress as compared with their non-LGBTQ+ peers and are more vulnerable to mental health issues, especially suicide. ²¹

Among LGBTQ+ people, the intersection of socioeconomic status and race contributes to health care discrimination. Black and indigenous people are more likely than White people to experience racial discrimination in health care settings. ²² Furthermore, low socioeconomic status correlates with socioeconomic disadvantages, such as inadequate or no health insurance and increased financial barriers to health care. Low socioeconomic status and socioeconomic disadvantages also correspond to racial discrimination. ²² Rural and urban settings additionally influence the level of health care among LGBTQ+ people. A shortage of health care professionals in rural communities negatively affects the health of all community members; however, the lack of health care professionals who are knowledgeable of and sensitive to LGBTQ+ issues widens the gap in care between urban and rural settings. For example, in a study on health care disparities among lesbians in urban and rural areas in the United States, lesbians in rural communities received inadequate education on human papillomavirus (HPV) vaccinations as compared with their urban counterparts. ²³ HPV vaccinations reduce transmission of HPV and can prevent cervical, vaginal, and vulvar cancer if the vaccine is administered before HPV exposure.^23,24 Harmful biases, including homophobia, transphobia, and heteronormativity, align with conservative values and are often intertwined with rural US culture. ²³ Such biases affect care from health care providers and perpetuate health care discrimination.^25,26 Routine marginalization and experiences of stigma across personal, community, and structural levels have contributed to negative health outcomes for LGBTQ+ patients.^27,28 Innovative process changes are needed to halt the cycle of marginalization and facilitate health equity for LGBTQ+ people.

Impact of History on Stigma

Targeted harassment, pervasive at the onset of the AIDS epidemic, remains a barrier to care for LGBTQ+ adults aged ≥18 years. For example, people who exposed other people to HIV received legal penalties, ²⁹ regardless of whether they knew of their positive HIV status before exposing others. ³⁰ As of January 2023, 35 US states had statutory laws criminalizing sexual behavior that results in HIV transmission. From 2008 through 2019, 411 people were arrested and prosecuted for HIV exposure in the United States. ³¹ Prosecutions have been exacerbated by intersecting variables, such as discrimination based on race, sex, gender, ethnicity, sexuality, sex work, homelessness, immigration status, and substance use. ²⁹ Laws criminalizing sexual behavior have perpetuated increased HIV-related stigma and discrimination. Stigma experienced by family, friends, or health care encounters has been shown to affect the quality of life for people living with HIV or at risk of HIV. ³⁰

Fear of criminalization has led to suboptimal HIV testing. For example, in US states that prosecute people who expose other people to HIV, the prevalence of HIV testing has been reduced by 5% as compared with states that do not impose HIV-related laws. ³⁰ HIV criminalization is a structural stigma that has shaped HIV testing behaviors among gay, bisexual, and MSM (GBMSM). Current protocols include preventive measures such as HIV preexposure prophylaxis, which, when taken daily, reduces the risk of HIV infection through sex by 99%. ³² However, Black GBMSM still have a 1-in-2 lifetime risk of HIV infection and non-Black GBMSM a 1-in-6 lifetime risk. ²⁸ Thus, further work is needed on intersectional prevention efforts that target stigmatization and criminalization of GBMSM, specifically for planning and providing care to racial and ethnic minority GBMSM and especially during public health crises, such as the mpox outbreak.

Experiences of Student Nurses During Mpox Vaccination Outreach

The Outbreak Response Team at the University of Illinois at Chicago partners with the Chicago Department of Public Health to provide testing, vaccination, and education for public health outbreaks in Chicago. As nursing students invested in public health outreach, our response team performed public health initiatives focused on COVID-19 prevention through testing and vaccination in congregate settings, such as long-term care facilities, where it was intended for all community members regardless of sexual orientation or gender identity. Outbreaks of mpox, although not considered a sexually transmitted infection, have corresponded with intimate contact among GBMSM. With the recognition of historical stigma and criminalization in the LGBTQ+ community, the Outbreak Response Team conducted mpox vaccination campaigns in summer 2022 at bars, bathhouses, street fairs, and parks, where people at highest risk of mpox infection were likely to congregate. The Outbreak Response Team also collaborated with a sex worker advocacy organization in an effort to meet the needs of the community through street outreach. At the beginning of the summer 2022 campaign, our team found that demand for the mpox vaccine far outstripped the supply, with mpox vaccine sites filling up quickly and thousands of people calling or emailing requests to be vaccinated by the Outbreak Response Team. Although our team found that most people seeking vaccination at bars and bathhouses came to receive the mpox vaccine, we met many people at street fairs and during street outreach who were not well informed about mpox. In addition to providing mpox vaccination, we were available to answer questions and provide health education on reducing mpox risk.

To receive the vaccine, we required people to specify vaccine qualification by checking a box indicating that they were a member of a group at high risk of contracting mpox. As the outbreak evolved and the availability of vaccines waxed and waned, we changed the language on the consent form and the eligibility requirements for the mpox vaccine. For example, MSM, transgender people who are sexually active, and people who had close contact with someone with mpox were the only groups eligible for mpox vaccines in June 2022. In August 2022, we expanded eligibility to include people who have sex with MSM, sex workers, individuals eligible for preexposure prophylaxis, and people with HIV.

Raising Awareness of Existing Barriers

With the understanding that LGBTQ+ people are more likely than those who are not LGBTQ+ to experience discrimination or stigma, ²⁸ we were concerned that requiring self-identification as a member of the LGBTQ+ community, or outing oneself, would be a barrier to vaccination for some LGBTQ+ people. ²⁸ Throughout our vaccine events, we encountered people who seemed uncomfortable when asked to disclose their gender identity and/or sexual orientation. Another important concern for people struggling with disclosure was the visible mark caused by the vaccine. As intradermal administration reduced the dosage needed for the vaccine to be effective, ⁵ the route of administration transitioned from subcutaneous to intradermal vaccination to allow more people to get the full dosage required for protection. Intradermal administration, however, left a bump that expanded into a bruise-like mark lasting from weeks to months. ² Some people voiced concerns that a visible mark might reveal to friends, family, or others in the community that they had received an mpox vaccination reserved for GBMSM. Although the Chicago Department of Public Health and the Outbreak Response Team framed eligibility to protect GBMSM by ensuring that those most at risk had access to the vaccine, those unwilling to disclose sexual behavior were denied vaccination because of the protocol requirements.

Ethical Dilemma of Self-disclosure Related to Sexual Identity and Sexual Behavior

Intrapersonal factors—such as the personal belief that sexual or gender identity is private or if a person has a negative internalized belief about one’s identity—are barriers to receiving care if self-disclosure of sexuality or gender identity is required to receive a service. ³³ Some people who engage in same-sex sexual relationships or are exploring gender identity do not feel safe articulating aspects of their identity to themselves, let alone to health care providers with whom they do not have an established relationship. In addition to people in the LGBTQ+ community or people who engage in same-sex sexual relationships, sex workers are eligible for the mpox vaccine. ³⁴ Stigma toward sex workers often intersects with stigma toward people who are queer, transgender, and in racial or ethnic minority groups. This intersection of stigma deters sex workers, especially transgender sex workers, from receiving health care. ³⁵

Self-disclosure poses a risk to physical safety. Our Outbreak Response Team determined mpox vaccine eligibility, performed vaccination, and conducted risk-reduction education in various settings, including small rooms, community gathering places, bars, and sidewalks in the presence of other people. The safe spaces that our team provided offered opportunities for access but could also pose risks associated with disclosure. At the heart of the Outbreak Response Team is the provision of culturally safe care where a transfer of power from the health care provider to the patient exists through partnerships to address power imbalances and inform care delivery. ³⁶ With the recognition of medical mistrust stemming from a history of medical maltreatment, we partnered with community-based organizations and businesses frequented by people from the groups at highest risk of mpox. Unfortunately, for people who are hesitant to be “out,” even relatively safe spaces might present barriers, and our requirement for self-disclosure before mpox vaccination is misaligned with an intentional trusting relationship promoted with culturally safe care. Future initiatives must build on community-based and population-specific outreach to further consider the historical and current violence perpetrated against marginalized communities, even in spaces deemed safe by openly LGBTQ+ people.

Recommendations

As student nurses working in collaboration with the Outbreak Response Team during the mpox response, we were able to formulate several recommendations based on our experiences, observations, and engagement with those seeking the vaccine or by attending events where we provided vaccinations. During public health crises, public health workers must protect people who are marginalized and stigmatized because of their racial, ethnic, sexual, or gender minority status. ³⁷ During the mpox outbreak, when mpox vaccines were scarce, public health workers aimed to reach people most vulnerable to mpox, resulting in gatekeeping through screening people for eligibility before they could be vaccinated. Although it was necessary for public health workers to ensure that people at greatest risk of mpox infection were receiving the mpox vaccine, people voiced concern about sharing their sexual practices and how the associated data would be used. Our Outbreak Response Team reassured people seeking the vaccine that we would not share their personal data and that the aggregated data were useful in understanding who had been vaccinated and which communities might need more targeted outreach to facilitate access to the vaccine. Our culturally safe approach to data collection and open communication aims to empower communities and center the patients by being responsive to their individual needs. ²⁶

Instead of including specific questions requiring self-disclosure of sexuality or gender identity, we recommend a more inclusive strategy that highlights education and prioritizes patient autonomy. Obtaining accurate data on people affected by a transmissible virus contributes to public health knowledge and outbreak responsibility. However, we must consider that people who do not feel comfortable disclosing their gender identity and are engaging in high-risk behavior are potential carriers who require vaccination. Elevating public health needs while honoring the unique circumstances of patient privacy and disclosure must be prioritized.

We recommend strategies that could improve health literacy among health care providers in their community. For example, for mpox vaccination efforts, health care providers should first educate all people who are seeking vaccination on current epidemiologic data related to transmission of the mpox virus and groups likely to be infected by mpox. Next, health care providers should confirm the need for the vaccine by asking people seeking it whether they belong to a group that is likely to contract mpox. Student nurses acknowledged that such an option would honor patient autonomy and ensure that patients can receive the mpox vaccine without the need to directly disclose their sexual practices if they are uncomfortable doing so. This approach avoids using the language of “at risk,” which is often used to identify those most likely to contract a certain disease or condition. This risk-based language may not be aligned with culturally safe health care given that use of “at risk” has been experienced as stigmatizing by LBGTQ+ populations. ³⁸ Reframing language and approach can facilitate culturally safe mpox prevention and vaccination promotion. ³

Trust between the patient and health care provider is essential to cultural safety. ³⁹ An argument against trusting patients to determine for themselves if they should receive mpox vaccine is that the “worried well” (ie, people whose behavior does not increase their risk of infection but who want the vaccine anyway) may see themselves as vulnerable to infection regardless of actual behavior. Robust education about behaviors that increase the risk of mpox infection must also highlight concerns about mpox vaccine supply. Instead of using fear tactics, which may encourage opportunity hoarding, education should highlight the people most appropriate and not appropriate for the mpox vaccine. More work is needed to identify people who are likely to contract mpox based on their sexual practices but are reticent to out themselves. Our recommendation assumes that people are comfortable coming forward to a vaccination site advertised to the GBMSM population. However, people who are not yet out or who are not comfortable affirming that they qualify for the mpox vaccine remain vulnerable to infection as barriers to receiving care might still be too high. Further work is needed to identify trusted messengers in the LGBTQ+ community. An aim of partnerships with trusted messengers is to attract people who need the mpox vaccine to events that provide culturally safe, necessary, and preventive care.