Combating Stigma in the Era of Monkeypox - Is History Repeating Itself?

Abstract

Men who have sex with men (MSM) and people living with HIV (PLWH) perceive, internalize, and experience significant stigma from family members, healthcare providers, and community members because of their lifestyle choices. The current Monkeypox (MPX) outbreak is currently affecting both communities. The pandemic has spread to 89 countries with more than 31,000 confirmed cases, and global agencies are concerned about how the disease is portrayed in the media. This manuscript will briefly introduce MPX and its associated stigmas, providing a brief theoretical perspective on adaptive behaviors and nursing interventions to mitigate stigma. This is followed by a case-based description of the current experiences of an MSM infected with MPX. We will discuss stigma prevention strategies from an adaptation and mitigation perspectives. We will close the manuscript with how nurses can contribute to stigma prevention for PLWH that have gotten infected with MPX. (143 words)

Introduction

In May 2022, scientists identified a multi-country outbreak of monkeypox (hereafter referred to as MPX) affecting people outside of West Africa. Now Europe and North America are experiencing high numbers of cases. As of August 10th, 2022, the Centers for Disease Control (CDC) had identified more than 9,492 cases of MPX in 51 states (The Centers for Disease Control and Prevention, 2022a). MPX is spread through close physical contact and shared personal items like clothes and bedsheets that have been used by someone with MPX. MPX spread is not bound by race, ethnicity, gender, or sexual identity. Despite this, more than 90% of confirmed cases have been among men who reported male to male sexual contact (Centers for Disease Control and Prevention, 2022b). Unfortunately, due to inconsistent messaging about where the current MPX outbreak originated, and the communities most affected by the outbreak, viral proximity has been conflated with mode-of-transmission. We are confusing an outbreak transmitted through social networks and high community viral load, with sexual behaviors. This confusion has unfairly centered men who have sex with men (MSM). MPX messaging is harmful to high-risk communities like MSM who already experience stigma, marginalization, and discrimination in interpersonal and institutional settlings (Layland et al., 2020; Balik et al., 2020). It also harms the larger community by downplaying risk associated with heterosexual or non-sexual close contact.

The parallels between the MPX outbreak and the HIV epidemic are stark. These are both infectious outbreaks first identified among sexual minorities, with limited but evolving science, and a fragmented public health response. As with the HIV epidemic, the potential for stigma associated with MPX is significant. People with MPX face stigma related to fears of infection and unknowns about the virus. The characteristic rash associated with MPX is a clinical sign raising diagnostic suspicion, but also increases disease visibility, identifying and outing those affected (Goffman, 1956). But MPX stigma is not limited to fear of the disease itself. Spurred on by health equity scholars and community activists, the World Health Organization (WHO) is considering changing the name “monkeypox” to something that carries less racial stigma (World Health Organization, 2022b). Black individuals from Africa and elsewhere have been subject to dehumanizing comparisons to monkeys to justify poor treatment and inequity. Preliminary data from the CDC indicates possible racial disparities in MPX infection rates in the southern US, mirroring long held disparities in the HIV epidemic (CDC, 2022b). In the current outbreak, people living with HIV (PLWH) are also overrepresented among those with MPX (Joint ECDC-WHO Regional Office 2022). As a result, multiple types of stigma may be at play as people with MPX infection interact with others.

Stigma is a complex social process that includes social marginalization, erasure and discrimination that threatens the physical, mental, and emotional wellbeing of the individual (Turan et al., 2017). Negatively perceived attributes or characteristics contribute to perceptions of lower social value, underpinning stigma (Stangl et al., 2019). Everyone has a variety of traits and characteristics that together create a unique identity. Among those traits may be two or more negatively perceived qualities that interact, intensifying stigma (Turan et al., 2017). These may include but are not limited to, sexual-identity stigma, HIV-related stigma, and racial stigma. People with MPX have the additional burden of navigating a healthcare system that has historically dismissed their needs based on societal position (Zak, 2022). We must consider the impact that stigma may have on healthcare seeking, and care access for MPX as well as the socioemotional impact on the individual. The full social consequences of MPX are unknown and continue to unfold in the media, in healthcare settings and in the community.

When MSM discover and accept men as preferred sexual partners, they must reevaluate their place in society. MSM engage in sexual behaviors that are discordant with heteronormative culture and may conflict with their family upbringing (Herek, 2009; Currin, Hubach & Croff 2020). Resultingly, many MSM internalize stigma towards their own sexual behavior stemming in part from a failure to fulfill the expectations of their primary social networks (Herek, 2009; Pachankis et al, 2017). Their ability to leverage social supports depends upon whether they have widely disclosed their sexual orientation and/or sexual practices, social acceptance of male-to-male sexual contact, and ability to access lesbian, gay, bisexual, trans and queer (LGBTQ) networks. Homophily is highly dependent on the cultural context of the individual and whether LGBTQ individuals have equal rights to other members of society (Pachankis et al, 2021). When MSM disclose their sexual identity and are welcomed into a new community, they may feel a sense of social connectedness that protects against stigma (Tierney et al, 2021). Public fear of infection fanned by alarmist media coverage of MPX, the visibility of MPX lesions, community isolation and other factors contribute to stigma. Mitigating factors such as MPX knowledge, symptom validation and psychosocial support, balanced against negative factors, may help to lessen stigma associated with MPX (See figure 1). Using a case-based discussion, we will illustrate the potential stigma-related complications for PLWH and MPX infection.

Figure 1.

Case Description

A 41-year-old male presented to the emergency department (ED) with a history of dry cough, fatigue, decreased appetite, a small nodule on the right side of the neck, and pharyngitis that started 4 days prior. His symptoms resolved but he then developed lesions on his genitals, arms, and oropharynx which are very painful and pruritic, prompting the ED visit. The patient has a history of well-controlled HIV. He is given a presumptive diagnosis of MPX. He reports being in a monogamous relationship with a male partner but has concerns about his partner’s fidelity. The partner has developed similar symptoms. The patient works in a food industry factory and has close physical contact with his co-workers while processing meat. The patient was counseled to isolate himself at home and stay out of work until he is notified of his MPX test results. The patient was notified 2 days later that the MPX test was positive, and informed that the case was reported to the local health department for contact tracing. He is instructed to isolate himself at home until the scabs have fallen off, and a fresh layer of intact skin has formed. The patient is concerned that his coworkers will learn of both his MPX infection and sexual identity through contract tracing notifications. The patient also asks about whether the lesions will scar or leave lasting marks of his infection.

Potential stigma-related complications

The consequences of MPX infection for this patient include health, economic and psychosocial sequelae. Disease-associated stigma impacts multiple aspects of an individual’s life, adding clinical, financial, and social burdens (Rao et al., 2019). HIV-related stigma is a well-documented phenomena and MPX-related stigma may unfold similarly (Mahajan et al., 2008). On an intrapersonal level, MPX-related stigma can cause feelings of shame and self-blame that negatively impact health and wellbeing (Alfonesca & Kekatos 2022). HIV-related stigma can lead to depressive symptoms, emotional and mental distress, and anxiety (Rueda et al., 2016), the shame associated with MPX-infection may cause similar psychological distress.

MPX-related stigma may also have negative social consequences for people with MPX infection. It is well documented that PLWH report lower social support (Logie & Gadalla, 2009), which in turn is associated with poorer mental and physical health (Jia et al., 2004). It is reasonable to consider that people with MPX infection may also report inadequate social support. Lack of support from family, friends, neighbors, and coworkers during an acute illness can be particularly challenging and isolating. Unfortunately, people diagnosed with MPX describe feelings of isolation and suffering alone (Ducharme, Haupt & Kluger, 2022). Community fear of MPX infection, often unfounded, can increase isolation. Public health messaging about MPX has been focused on disproportionate disease rates among MSM. This can lead to fear of and judgement towards a population that public health providers are trying to inform and protect (Galea, 2022). Additionally, infection with the MPX virus causes a visible rash that can lead to labeling, stereotyping, judgement, rejection, and isolation (Link & Phelan, 2001). Anyone with a visible rash may be incorrectly labeled as MPX infected, furthering social stigma and isolation. Beyond the initial infection, MPX lesions can cause scarring and hyper-and hypo-pigmented spots. This is a visible calling sign for the infection that allows sorting and labeling by infection/immunity status. Scaring and discoloration is more noticeable in people of darker skin tone potentially creating treatment disparities from two visible intersecting attributes.

The healthcare implications of disease-associated stigma are significant. Anticipated stigma is a well-documented barrier to infectious disease testing, care retention and treatment adherence (Kalichman et al., 2009; Turan et al., 2018; Leddy et al., 2019;). Anticipated stigma is not unfounded in the current MPX outbreak. People with MPX symptoms report being misdiagnosed, clinically mishandled, and dismissed to manage their own symptoms alone and without adequate MPX knowledge (Ducharme, Haupt & Kluger, 2022). Without appropriate treatment, patients may suffer prolonged or more complicated illness. Delays in health-seeking can result in inadequate isolation and further disease transmission (Lee & Morling, 2022). As instances of medical skepticism and indifference spread in the community, people with MPX may become discouraged with the healthcare system. Stigma becomes a public health threat when individuals are afraid to seek healthcare hindering appropriate mitigation efforts like contact tracing and transmission prevention.

MPX-related stigma also has potential economic consequences. Confirmed MPX cases require isolation for an extended period (2–4 weeks). Isolation keeps workers at home which can result in decreased income and employment precarity. Many people lack occupational protections against workplace dismissal like FMLA or short-term disability, exposing them to job loss. A person with MPX infection may also be fearful of workplace disease-status, or sexual-identity status disclosure, which could lead to judgement, harassment, and status loss (Toutant, 2022).

Stigma exists even within the LGBTQ community, and fear of infection can risk alienation from one’s own trusted social network. While the term “MPX immune” has popped up on sex-based hookup apps, the community itself seems to have embraced this label for those who are either vaccinated or recovered. While this may provide a sense of control in an otherwise dismaying outbreak, it harkens back to the HIV epidemic and language about serostatus and cleanliness. While making a statement about immunity is not stigma, we must be aware of signs of labeling that may lead to stereotypes and judgement if we are to avoid a repeat of the past. HIV-related stigma has long been one of the most troubling aspects of the HIV epidemic and since the arrival of MPX there have been reports of blame placed on MSM, for the origin and spread of the MPX virus. For PLWH, MPX and a marginalized sexual identity, it can be particularly challenging to cope with the psychosocial impacts of intersecting stigmas. These stigmas can have a synergistically negative impact on social interactions and opportunities for healthcare access (Rice et al 2018).

Mitigating Stigma

The role of healthcare providers

Healthcare providers should be leaders in MPX-related stigma prevention. Assuming a sex-positive attitude and an assumption free clinical assessment of clients’ sexual preferences is key to obtaining an accurate health history. An unbiased clinical space will more readily allow clients to disclose sexual practices that could potentially expose them to MPX. Using sex-positive questions and messaging when interviewing patients who present with concerns about MPX infection is important because it allows the patient to share important information with the healthcare provider and assures that the patient receives an appropriate evaluation. This also allows for accurate patient education about MPX and will encourage people with MPX symptoms to readily report symptoms, aiding in diagnosis and transmission mitigation practices. On an institutional level, it is important to ensure that healthcare provider staff have access to the most up to date MPX evidence to help prevent misinformation and reduce fear both for individual patients as well as the public.

Community Stigma Prevention

Community leaders are encouraged to educate their community members with accurate information about MPX and its transmission to prevent fear and resulting stigma. When fear levels are high in the community, people begin to label, stereotype and distance themselves to protect themselves from infection (Link & Phelan, 2009). Important actors here are the national and local public health departments, and local healthcare systems. Appointing local leaders to educate and disseminate adequate information will reduce fear, panic, and stigma against PLWH and MSM and other marginalized members of the community at risk for MPX infection. MPX, while infectious and contagious, is treatable and preventable. Positive public health messaging, along with transmission information free from sexual and gender identity bias, will help to keep community members informed and safe.

Global and Public Health Stigma Prevention

MPX was first identified in humans in 1970 and has until 2022 been considered endemic to small outbreaks in Africa (CDC, 2022). In 2018, the world paid little attention to the alarm raised by Dr. Yinka-Ogunleye when his team documented the outbreak in Nigeria. Dr. Yinka-Ogunleye and colleagues documented higher rates of infection among men and found that many of them were MSM (Yinka-Ogunleye et al., 2018). Only now that the virus has spread to 89 countries and WHO has declared a public health emergency, is the global community paying attention (World Health Organization, 2022). Unfortunately, infectious diseases spread most quickly in groups of people with close contact to others (e.g., prisons, tribal communities, and post-disaster) (Nijhawan, 2016; Jain et al., 2015, Carnley, 2021). The small size of the global MSM community (3% to 6% of the male population) may be a contributor to MPX spread within such a limited community network (Mauck et al., 2019). The WHO and other organizations have expressed great concern that the language and pictures of people with MPX in the media reinforce homophobic and racist stereotypes (World Health Organization, 2022c). The use of dark-skinned individuals as icons of MPX in an outbreak in the global north is problematic and conveys a message that Whiteness is protective against MPX. Education campaigns should stress that anyone who comes into close personal contact (skin to skin) with MPX has the potential for infection. Diverse educational material depicting men, women and children with MPX will help to end the misnomer that MPX is sexually transmitted or limited to MSM (Centers for Disease Control, 2022d). The world’s indifference to the MPX endemic in West and Central Africa highlights how racial stigma is detrimental to global public health. Had we heeded Dr Yinka-Ogunleye’s warning in 2018, we might have better prepared us for the current outbreak.

Nursing’s Role

Nurses have a vital role in defining how we address this new outbreak. Personal protective equipment such as gowns, gloves, and facemasks protect against occupational exposure to MPX. Every nurse must be prepared to clinically manage a patient with MPX infection. Symptom validation and appropriate clinical treatment are key to communicating to a client with MPX that they deserve appropriate care regardless of infectious status, sexual identity or race. People with MPX-infection need appropriate testing, diagnosis, and treatment of their illness. There are numerous reports of people with MPX-associated symptoms being denied assessment and testing by health care clinics (Chaiyabhat, 2022; Otterman, 2022). While MPX testing capacity has increased as more laboratories ramp up testing, clinical settings must reorganize staffing and resources to make testing more readily accessible for patients (Awan et al. 2022). Unfortunately, this outbreak surfaced as healthcare settings continue to suffer low staffing levels due to the ongoing COIVD19 pandemic. The antiviral, tecovirimat, is available for the treatment of MPX infection and is reported to lessen illness severity and decrease viral shedding (Adler et al., 2022). However, tecovirimat is not FDA approved; the drug is considered experimental. Providers wishing to prescribe tecovirimat for patients with MPX infection must request it through state and local health departments or through the CDC Emergency Operations Center (Centers for Disease Control and prevention, 2022c). This has created barriers to drug acquisition and delays in treatment initiation (Mandavilli, 2022). Moreover, effective pain management and appropriate clinical care affirm the client’s choice to access healthcare and enter the public health system. However, to actively combat stigma nurses must also leverage psychosocial supports, foster social connections, provide accurate MPX education, and safeguard patient privacy.

Mandatory reporting of communicable diseases like MPX are an essential part of public health approaches to preventing transmission and mitigating an outbreak. However, disease reporting needs to include considerations for patients’ legal right to confidentiality. Many reportable communicable diseases, like MPX, are stigma-associated and patients may worry that information reported to public health authorities will spread to others in the community. Patients with MPX infection should be informed that MPX is a reportable disease and be provided with specific information about the reporting and contact tracing process. Reassurance that all other parts of the patient’s health record remain confidential is an important part of educating patients with MPX infection. It is vital for nurses to protect the privacy of their patients so that those affected feel safe and secure during their recovery phase.

Nurses can contribute to the prevention of stigma by identifying and raising awareness to stigmatizing behaviors in healthcare teams. Nurse leaders can educate their staff about inclusive language and creating safe spaces for individuals of diverse race, gender, disease status, and sexual experience. When stigmatizing incidents occur, it should be treated as a serious event and used for debriefing, discussion and an improvement opportunity for the entire care team. Nursing organizations need to come together and share the best evidence about MPX with the 4 million US nurses to reduce anxiety and provide clear guidance for MPX case management.

Conclusions

Stigma is correlated with poor infectious disease knowledge (Junaid, Kanma-Okafor, Olufunlayo, Odugbemi & Ozoh, 2021; Irmayati, Yona & Waluyo 2019). Rather than spreading panic, we should see the current outbreak as a major opportunity to improve our public health messaging and our responses from healthcare providers. Throughout the HIV epidemic, people have labeled, stereotyped and judged PLWH hindering public health efforts to curb disease spread. Many people disagree with the lifestyle of MSM for personal, religious, or cultural reasons, and respond with judgement, threats, and ridicule to suppress the individuality and personal values of MSM. These stigmatizing behaviors may exacerbate the current MPX outbreak, impeding public health efforts and prolonging suffering. Every effort should be undertaken to prevent the stigmatizing behaviors that we have seen during the HIV pandemic from resurfacing during the current MPX outbreak.

Key Considerations.

1. Obtaining a sex-positive sexual health history allows people with suspected MPX infection to receive appropriate evaluation, treatment, and education.

2. Provide people with MPX with information about public health department contact tracing practices and protections for the individual’s identity.

3. Providing patients with psychosocial support is an important part of helping patients cope with disease-associated stigma and its consequences.

4. Recognize the potential mitigating factors associated with disease-associated stigma so that patients can be cared for and supported appropriately.