Monkey Pox and Missed Opportunities

There is an old linguistic theorem suggesting that the language we use reflects the way we understand the world around us. The Sapir-Whorf hypothesis, while fraught with some real problematic assumptions and implications, is useful when we think about why and how the naming of things, like disease, matter.

As students in my global-health-related courses will tell you, I was fascinated and focused on COVID-19 generational terminology — after the Mu variant for example, the World Health Organization (WHO) labeled the next variant strain Omicron, skipping over Nu and Xi. As the epidemiologist Dr. Martin Kulldorff at Harvard commented in 2021, the concern was raised that Nu would cause confusion with the word “new” and Xi was passed by to avoid unnecessarily stigmatizing the region or leader of China as pandemic politics continued.

Indeed, similar concerns arose when the Centers for Disease Control and Prevention (CDC) and the WHO announced in 2022 that the United States reached a new milestone in the pandemic: We were approaching endemicity, and a level of COVID-19 virus would remain constant in populations across geographic regions but at expected and manageable levels. The fear this time was that using public health parlance “endemicity” would create confusion as reports of far too many individuals across the country interpreted this announcement as the “end” of the coronavirus and abandoned precautions.

So, at the advent of the Mpox outbreak last year, it was not surprising that persistence in calling the virus “monkeypox” had critical implications for public response. Despite the 2015 WHO statement on best practices in naming new human infectious diseases, the use of the name monkeypox stuck (the WHO and CDC did not officially change the name to Mpox until November of 2022) and arguably helped foster misunderstandings, misperceptions, and missed opportunities for better intervention.

Misleading medical misinformation can be dangerous to our health and to our human rights. As science columnist Philip Ellis puts it when cautioning the public against seeing Mpox as simply another STD, “The public language and framing around healthcare needs to be incredibly clear and specific; otherwise, entire communities may end up underestimating or even dismissing their own risk levels … muddled messaging or, worse, language that implies blame can end up emboldening existing stereotypes and biases, exacerbating the discrimination faced by already-marginalized groups.”

Indeed, the WHO best practices told us this, but perhaps we missed it … as Dr. Keiji Fukuda, assistant director-general for health security at the WHO, reflects in the 2015 statement, “In recent years, several new human infectious diseases have emerged. The use of names such as swine flu and Middle East Respiratory Syndrome has had unintended negative impacts by stigmatizing certain communities or economic sectors … This may seem like a trivial issue to some, but disease names really do matter to the people who are directly affected. We’ve seen certain disease names provoke a backlash against members of particular religious or ethnic communities; create unjustified barriers to travel, commerce, and trade; and trigger needless slaughtering of food animals. This can have serious consequences for peoples’ lives and livelihoods.”

What were some of the consequences of the Mpox outbreak in the past year? In November of 2022, Colgate’s Global Public and Environmental Health Program, with the support of ALST, invited Kenneth Cruz to campus to give an overview of those consequences, missed opportunities, and lessons learned from other virus policies and outcomes in the United States. Cruz is the the Monkeypox Awareness and Prevention Partnership Program data and communications lead for the African Services Committee in New York City. [Despite the official move to Mpox as correct nomenclature, Cruz pointed out that this remained his title and the name of the program at the time.] His talk, “Walk don’t run: How NYC’s failed MPV outbreak response struggled to learn from the HIV and COVID-19 crises” highlighted several crucial aspects of the failed response to the outbreak. Cruz pointed out the implicit biases; the missed opportunities for treatment and for vaccinating a wider portion of at-risk populations; the missed timing in terms of information dissemination — and how we should have more carefully heeded lessons learned from recent HIV/AIDS and COVID-19 epidemics. 

Some of the key takeaways from Cruz’s talk continue to resonate. We failed to respond to Mpox in ways that could have prevented numerous infections. As of January 2023 (these data are updated weekly on the CDC website) there were almost 30k cases and 21 deaths in the United States, and 84.5k cases globally.

Beyond a failure to maintain a viable, unexpired stockpile of vaccines and the late declaration of Mpox as a global public health emergency, stigma and scarcity of trained contact tracers contributed to the perfect storm of the Mpox outbreak in 2022. For example, with the sense that the specter of COVID-19 was receding, NYC’s health department relieved over 2,000 trained contact tracers just a few weeks prior to the Mpox outbreak and Pride month — tracers who could have been instrumental in quickly addressing the spread, particularly in high-risk LGBTQ and communities of color, where they had been immersed. In addition, Cruz told us, much of the early information about Mpox was not accessible in languages other than English, limiting accessibility and accurate dissemination. There were, to say the least, a lot of missteps.

But Cruz reminded us of the power of communities to care for one another. In one example, he highlighted the differences between intradermal vs. subcutaneous vaccine administration as a way in which front line health workers actually increased vaccine equity despite federal mandates that would have done the opposite.

In 2022, the federal government advocated for intradermal injections (ostensibly in order to stretch the dosage given the discovery of the expired stockpiles) despite the more difficult mode of administration. Subcutaneous administration was the tried-and-true method at that point, and it was becoming clear that vaccine scarcity and barriers to dissemination were hindering best efforts writ large, and local vaccine administrators just wanted to disseminate either Mpox vaccine as widely as possible. The problem was that subcutaneous injections were now purportedly only to be given to folks who had history of harmful keloid scarring. So, as Cruz described, faced with dilemmas as to whether to vaccinate or not, local administrators would “wink and nod” and inquire expectantly whether clients might have such a history, enabling them to safely get a vaccine.

To further avoid federal mandates to push intradermal and limit access, local vaccine administrators gave the MPV subcutaneously in mobile vans. They justified the change by pointing to the potential harm that could arise from intradermal injection in a potentially moving vehicle (though as he noted, the mobile units were always stationary).

The MPV response failures were myriad and myopic. The missed opportunities to address scarcity, stigma, and misinformation compounded throughout last summer. But creative responses, some reliance on lessons learned and care for communities at risk, helped ameliorate some of the impact of Mpox in the long-run.

Dr. Keletso Makofane, a public health scientist, activist, and fellow at Harvard’s FXB Center for Health and Human Rights confirms what Cruz talked about here at Colgate. That is, naming and the language we use is important, but so too do successful responses — access to testing, vaccines, and treatment. Mpox is on the decline regionally but remains a threat at the global level. And we are brought back to the additional, very real implications of the term endemicity. It allows us to be complacent, complicit even, in overlooking disease.

As Makofane tells us, describing Mpox as endemic in other regions of the world “implies a sense of equilibrium or stability — but it can also engender apathy, particularly among people who aren’t directly affected by the disease.” Moreover, we see the term used in ways that continue to “create the impression that those people’s suffering [in Africa] is to be expected and is acceptable, whereas the suffering that’s happening here as a result of monkeypox is highly exceptional and that we should be responding.”

Let’s not miss more opportunities to respond. As Cruz said to our campus audience, let’s run toward better health equity and reduce our collective risk or missed opportunities to learn from Mpox.