What’s in a Name? Combating Monkeypox Stigma and Inaction
By Jessica Grinspan and Stella Safo
The emergence of monkeypox demonstrates the faults in our collective response to public health crises, a realization that is particularly confounding in light of the recent COVID-19 pandemic. Indeed, the monkeypox spread has followed an all-too-familiar trajectory: In June, the World Health Organization (WHO) declared the rapidly escalating outbreak a Public Health Emergency of International Concern (PHEIC); in August, the White House followed suit with its own public health emergency declaration. Soon, the Centers for Disease Control (CDC) confirmed that the monkeypox virus had reached all 50 U.S. states — and New York City sat at the epicenter, accounting for more than one-third of the nation’s cases.
Monkeypox, a serious but usually non-fatal disease that can cause flu-like symptoms and painful lesions, stems from a virus similar to smallpox that spreads through close physical contact. Contrary to its name, the virus’s natural reservoir is not thought to be primates — rather, the zoonotic disease tends to be carried by rodents, which can then pass the virus to human hosts. But perhaps the most important feature of the monkeypox virus is that, in humans, transmission is entirely preventable. The key to stopping the spread? A coordinated public health response that is evidence-based, transparent, and non-judgmental towards all people.
With the peak of the COVID-19 pandemic barely in the rearview mirror — and the vestiges of the HIV/AIDS epidemic not far behind — such a public health response should, by now, be muscle memory. Just as the previous pathogens had disproportionately affected marginalized groups, so too has the monkeypox epidemic revealed major racial and ethnic disparities in the virus’s spread. According to new CDC data, Black or African-American people account for about 33% of all U.S. monkeypox cases, despite making up only 12% of the overall population; Hispanic or Latinx people account for about 32% of the nation’s cases, while making up 19% of the population share. Even more alarmingly, Blacks or African-Americans have received only 10% of vaccines administered in the United States; Hispanics or Latinx have received 22% of vaccines administered; and whites have received 47% of vaccines administered.
Why do these stark health inequities persist, regardless of specific pathogen? If the current public health response to monkeypox is any indication, it’s that we seem to have a problem with priorities. Just as we saw amid the recent ravaging of COVID-19, the rollout of testing and vaccines has been sluggish at best, and embarrassingly egregious at worst. Yet instead of addressing practical inequities head-on, we’ve found ourselves hung up on the virus’s one-word moniker, with the WHO vowing to rename the disease “to avoid causing offense to any cultural, social, national, regional, professional, or ethnic groups.”
Simply renaming the disease is not a panacea for our growing equity problem, and serves as little more than a distraction from the pressing systemic issues.
There’s no denying that names can matter in our efforts to eschew stigma and discrimination. But when tangible resources — i.e., testing and vaccines — are so severely limited that supply cannot keep up with demand, our top priority should be to assure that we approach allocation through an equity lens. This means, first, identifying the populations that are most vulnerable to catching the virus and ensuring that they have the first access to tests and treatments. In monkeypox, these populations comprise not only of those who identify as LGBTQI+, but also of Black, Indigenous, and people of color who may face additional layers of stigma.
Even as the U.S. Department of Health and Human Services (HHS) has expanded the availability of testing sites and doses of monkeypox vaccine, concerns remain about whether these resources are reaching the marginalized individuals who need them the most. In New York City, for instance, some public health advocates have pointed out that additional walk-in clinics are popping up in primarily affluent areas of the city, which are most accessible to wealthy white people. Furthermore, the city’s rollout of an online booking system has been riddled with technical glitches from the start, suggesting a disproportionate use by highly educated individuals with exceptional computer savvy (not to mention extra free time).
In light of the troubling CDC data, the White House announced last month actionable steps to better protect communities where the monkeypox outbreak has hit hardest, including communities of color. This “equity intervention pilot” includes setting aside 10,000 vials of vaccine — 100 per jurisdiction — for use in “up to 5 equity-related interventions, including distribution from community-based clinics that may have not been reached by the current vaccine supply, distribution at smaller events, and in venues reaching Black and Latino LGBTQI+, and distribution to communities identified locally as a priority based on local epidemiology of MPV.”
While it remains to be seen whether these measures can help reduce disparities, the pilot program seems like a significant step in the right direction. Even so, we cannot breathe a sigh of relief and consider our work done just yet. Indeed, improving access to testing and vaccines is an important piece of the equity puzzle — but without parallel efforts to shatter stigma and rebuild trust in vulnerable populations, our access problem may morph into one of marked under-utilization.
Just as we saw at the height of COVID-19, fear of stigmatization remains a primary hurdle to health-seeking behaviors, whether access to healthcare is limited or not. In monkeypox — which, like HIV/AIDS, has repeatedly been framed as a “gay disease” — the stigmatization fears increase exponentially, as LGBTQI+ people of color face unique discrimination. According to a 2021 UCLA Williams Institute public policy report, “a large proportion of Black LGBT adults have experienced victimization,” including 79% who reported verbal insults or abuse and 60% who reported threats of violence. And among Hispanic LGBT individuals, a 2020 Center for American Progress survey reported that 36% of respondents experienced discrimination, while 20% avoided seeking necessary services to avoid such abuse.
Scrubbing away the stigma that is so pervasively ingrained in our culture will take generations, if not longer, to accomplish. As we’ve endured disease outbreak after outbreak, inequity after inequity, we’ve only barely begun to break down the walls. But in the meantime, if we hope to emerge from the current crisis as unscathed as possible, a little bit of thoughtful messaging can go a long way. As the CDC recommends in its recent stigma-reduction guidance, this messaging should include 1) describing monkeypox as a legitimate public health issue that is relevant to all people; 2) educating about how monkeypox is spread; and 3) framing the image of monkeypox appropriately, with inclusive language, concepts that resonate with the audience, and strategies for treatment and prevention in a way that minimizes fear. The more openly we communicate that monkeypox can spread to anyone — regardless of race, ethnicity, or gender/sexual identity — the less strongly the stigma holds for the vulnerable communities whose trust we are fighting to regain.
At the end of the day, the monkeypox virus — just like HIV/AIDS and COVID-19 — does not discriminate; it’s people who do. But it’s also people who hold the power to be intentional in how we tailor our discussions around the disease, discussions that frame monkeypox as an affliction of the collective and not of a few perceived outgroups. As the Director-General of the WHO, Tedros Adhanom Ghebreyesus, so eloquently stated, “stigma and discrimination can be as dangerous as any virus, and can fuel the outbreak.” If this is true, it’s going to take far more than a surface-level switch of the name “monkeypox” to extinguish the fire. So too will it take more than throwing funding at our widespread access problem. If we truly are committed to the cause of equity as we combat another outbreak — and forestall others in the future — we must commit to a unified alignment of word and tangible action; then, and only then, can we valiantly break down barriers and together stop the spread.
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Jessica Grinspan, M.S., is a freelance writer and researcher for Just Equity for Health. She has a background in clinical trial research, medical communications, and community mental health services.
Stella Safo, M.D., M.P.H., is an HIV primary care physician and Founder of Just Equity for Health, a healthcare improvement company focusing on equitable care delivery for historically marginalized populations.
