Combating Stigma in the Era of Monkeypox—Is History Repeating Itself? : Journal of the Association of Nurses in AIDS Care

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

Bergman, Alanna MSN, AGNP-BC, AAHIVS*; McGee, Kara DMS, MSPH, PA-C, AAHIVS; Farley, Jason PhD, MPH, ANP-BC, AACRN, FAAN, FAANP; Kwong, Jeffrey DNP, MPH, ANP-BC, ACRN, FAAN, FAANP; McNabb, Katherine MSN, RN, ACRN; Voss, Joachim PhD, RN, ACRN, FAAN

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Journal of the Association of Nurses in AIDS Care: November/December 2022 - Volume 33 - Issue 6 - p 668-675
doi: 10.1097/JNC.0000000000000367
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In May 2022, scientists identified a multicountry outbreak of monkeypox (MPX) affecting people outside of West Africa—a geographical area where MPX is endemic. Now, Europe and North America are experiencing high numbers of cases. As of August 22, 2022, the U.S. Centers for Disease Control (CDC) had identified more than 15,433 cases of MPX across 50 states, Puerto Rico, and the District of Columbia (CDC, 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 transmission is not bound by race, ethnicity, gender, or sexual orientation. Despite this, more than 90% of confirmed cases have been among men who reported male to male sexual contact (CDC, 2022b). Unfortunately, due to inconsistent messaging about where the current MPX outbreak originated, and the communities most affected by the outbreak, we are confusing an outbreak transmitted through social networks and high community viral load, with sexual behaviors. This confusion has unfairly centered around 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 settings (Ayhan et al., 2020; Layland et al., 2020). It also harms the larger community by downplaying risk associated with heterosexual or nonsexual 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. Physical manifestations of disease are identifiers that highlight differences between an individual and the community at large, intensifying social identity consequences (Goffman, 1963). The characteristic rash associated with MPX is a clinical sign raising diagnostic suspicion, but also increases disease visibility, identifying and outing those affected.

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, 2022a) has adopted new names for MPX virus variants consistent with modern naming conventions. The names, Clade 1 and Clade 2, are free of geographic identifiers and aim to minimize regional, ethnic, or national stigma on the global stage (WHO, 2022a). Black individuals from Africa and elsewhere have been subject to dehumanizing comparisons with monkeys to justify poor treatment and inequity. Preliminary data from the CDC indicates possible racial disparities in MPX infection rates in the southern United States, mirroring long-held inequities in the HIV epidemic (CDC, 2022b). In the current outbreak, people with HIV (PWH) are also overrepresented among those with MPX (European Centre for Disease Prevention and Control & The World Health Organization, 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). Each individual has a variety of traits and characteristics that together create a unique identity. Among those traits may be two or more negatively perceived identities that interact, intensifying stigma (Turan, Elafros, et al., 2019). 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 health care system that has historically dismissed their needs based on societal position (Zak, 2022). We must consider the impact that stigma may have on health care 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 health care settings, and in the global 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 (Currin et al., 2020; Herek, 1998). As a result, many MSM internalize stigma toward their own sexual behavior, stemming in part from a failure to fulfill the expectations of their primary social networks (Herek, 1998; Pachankis et al., 2017). Their ability to leverage social supports depends on 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, transgender and queer (LGBTQ) networks. Homophily—the tendency to seek out or be attracted to individuals who share similar affinities or backgrounds—is highly dependent on the cultural context of the individual and whether LGBTQ individuals have equal rights to other members of society (American Psychological Association, n.d.; Pachankis et al., 2017). 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 ostracization, inadequate medical treatment, and homophobia 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. Figure 1 is adapted from Stringer et al. (2017) and represents the balance between stigma mitigating and enhancing factors. Using a case-based discussion, we will illustrate the potential stigma-related complications for PLWH and MPX infection.

F1
Figure 1.:
Factors enhancing and mitigating stigma. Note. MPX = monkeypox.

Presentation and Sequelae of Stigma

Case Description

A 41-year-old man 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 before. His symptoms resolved but he then developed lesions on his genitals, arms, and oropharynx that are very painful and pruritic, prompting the ED visit. The individual 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 individual works in a food industry factory and has close physical contact with his coworkers while processing meat. The discharge instructions associated with the ED visit included instructions to isolate himself at home and stay out of work until he is notified of his MPX test results. The individual was notified 2 days later that the MPX test was positive and was 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 orientation through contract tracing notifications. The individual 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 individual include health, economic, and psychosocial sequelae. Disease-associated stigma affects 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. On an intrapersonal level, MPX-related stigma can cause feelings of shame and self-blame that negatively affect health and well-being (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.

Monkeypox-related stigma may also have negative social consequences for people with MPX. It is well documented that PWH perceive lower social support (Logie & Gadalla, 2009; Xiaowen, 2018), which in turn is associated with poorer mental and physical health (Fang et al., 2019; Garrido-Hernansaiz & Alonso-Tapia, 2017). It is reasonable to consider that people with MPX 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 et al., 2022). Community fear of MPX, often unfounded, can increase self-isolation and social ostracization.

Public health messaging about MPX has been focused on disproportionate disease rates among MSM. This can lead to fear of judgment toward 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, judgment, rejection, and isolation—attributes associated with enacted stigma as described by Link and Phelan (2001). Anyone with a visible rash may be incorrectly labeled as having MPX, furthering social stigma and isolation. Beyond the initial infection, MPX lesions can cause scarring and hyperpigmented and hypopigmented spots. This is a visible calling sign for the infection that allows sorting and labeling by infection/immunity status. Further, scarring and discoloration is more noticeable in people of darker skin tone, potentially creating treatment disparities from two visible intersecting attributes.

The health care implications of disease-associated stigma are significant. Anticipated stigma is a well-documented barrier to infectious disease testing, care retention, and treatment adherence (Turan, Rice, et al., 2019; 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 et al., 2022). Without appropriate education and treatment, individuals with MPX may suffer prolonged or more complicated illness and unnecessarily transmit MPX to other individuals. 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, individuals with MPX may become discouraged with the health care system. Stigma becomes a public health threat when individuals are afraid to seek health care, 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 medical leave protected by the Family and Medical Leave Act or short-term disability, exposing them to job loss. An individual with MPX infection may also be fearful of workplace disease status, or sexual orientation status disclosure, which could lead to judgment, 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. Although 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 have recovered from a MPX infection. Although 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. Although making a statement about immunity is not stigma, we must be aware of signs of labeling that may lead to stereotypes and judgment 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 PWH, 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 health care access (Rice et al., 2018).

Mitigating Stigma

The Role of Health care Providers

Health care 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 (Mintz & Moore, 2022). 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 individuals who present with concerns about MPX infection is important because it allows the individual to share important information with the health care provider and assures that the individual receives an appropriate evaluation. This also allows for accurate individualized 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 health care provider staff have access to the most up-to-date MPX evidence to help prevent misinformation and reduce fear both for individuals 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 avoid infection (Link & Phelan, 2001). Important actors here are the national and local public health departments and local health care systems. Appointing local leaders to educate and disseminate adequate information will reduce fear, panic, and stigma against PWH and MSM and other marginalized members of the community at risk for MPX infection. MPX, although 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

Monkeypox was first identified in humans in 1970 and has until 2022 been considered endemic to small outbreaks in Africa (CDC, 2022b). In 2018, the world paid little attention to the alarm raised by Dr. Yinka-Ogunleye when his team documented the outbreak in Nigeria and reported higher rates of infection among men and found that many of them were MSM (Yinka-Ogunleye et al., 2019). Only now that the virus has spread to 89 countries and WHO has declared a public health emergency, is the global community paying attention (WHO, 2022b). Unfortunately, infectious diseases spread most quickly in groups of people with close contact to others (e.g., prisons, tribal communities, postdisaster; Charnley et al., 2021; Jain et al., 2015; Nijhawan, 2016). 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 (WHO, 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 only sexually transmitted or limited to MSM (CDC, 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 been better prepared 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 an individual 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 orientation, or race. People with MPX 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; Reuter, 2022). Although 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 individuals (Awan et al., 2022). Unfortunately, this outbreak surfaced as health care settings continue to suffer low staffing levels due to the ongoing COIVD-19 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 for MPX; the drug is considered experimental. Providers wishing to prescribe tecovirimat for individuals with MPX infection must request it through state and local health departments or through the CDC Emergency Operations Center (CDC, 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 health care 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 individual privacy.

Mandatory reporting of communicable diseases, like MPX, is an essential part of public health approaches to preventing transmission and mitigating an outbreak. However, disease reporting needs to include considerations for individuals' legal right to confidentiality. Many reportable communicable diseases, like MPX, are stigma associated, and individuals may worry that information reported to public health authorities will spread to others in the community. Individuals 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 individual's health record remain confidential is an important part of educating individuals with MPX. 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 health care 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 U.S. nurses to reduce anxiety and provide clear guidance for MPX case management.

Conclusions

Stigma is correlated with poor infectious disease knowledge (Irmayati et al., 2019; Junaid et al., 2021). Rather than propagating panic, we should see the current outbreak as a major opportunity to improve our public health messaging and our responses from health care providers. Throughout the HIV epidemic, people have labeled, stereotyped, and judged PWH 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 judgment, 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.

Disclosures

The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.

Author Contributions

Conceptualization: J. Farley, J. Kwong, A. Bergman, and J. Voss; Organization: A. Bergman; Writing: A. Bergman, K. McGee, and J. Voss; Revisions: A. Bergman, K. McGee, J. Farley, J. Kwong, K. McNabb, and J. Voss. All authors met the criteria for authorship as described by the International Committee of Medical Journal Editors and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Acknowledgments

Research and training of K. McNabb is supported by an F30 training grant funded by the National Institute of Allergy and Infectious Disease [F30AI165167]. Research and training of A. Bergman is supported by the Johns Hopkins University School of Nursing Predoctoral Discovery and Innovation Award.

Key Considerations

  • Obtaining a sex-positive sexual health history allows people with suspected MPX to receive appropriate evaluation, treatment, and education.
  • Provide people with MPX with information about public health department contact tracing practices and protections for the individual's identity.
  • Providing patients with psychosocial support is an important part of helping patients cope with disease-associated stigma and its consequences.
  • Recognize the potential mitigating factors associated with disease-associated stigma so that patients can be cared for and supported appropriately.

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The author of the article, “Monkeypox Virus Outbreak 2022: Key Epidemiologic, Clinical, Diagnostic, and Prevention Considerations” discusses the off-label use of tecovirimat.

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DOI: 10.1097/JNC.0000000000000371

Keywords:

HIV; monkeypox; MSM; stigma

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