Today, most people who stay moderately up-to-date regarding the spread of monkeypox know the same core facts: contraction is typically accompanied by a smallpox-like rash, it can spread through close contact with bodily fluids, and sexually active queer men make up a significant number of known cases. But when the World Health Organization (WHO) first began publicly commenting about the rise of monkeypox as a potential global public health emergency, official publications were careful about the language used to describe specific at-risk populations. Its bi-monthly epidemiological assessment update, for example, consistently refers to the body of cases as “mainly but not exclusively…identified amongst men who have sex with men (MSM),” and its facts sheet about monkeypox does not mention queer populations at all [1] [2]. Indeed, at the second meeting of the International Health Regulations (IHR) Emergency Committee of the UN – a collection of global public and community health advisors to the WHO Director-General – the committee members were unable to come to a consensus about even declaring an international emergency due to, in part, this same concern [3].
The international spread of monkeypox, which was declared a Public Health Emergency of International Concern by the WHO in July 2022, comes hot on the heels of the truly ubiquitous COVID-19 pandemic, for which public health communications took a vastly different approach. Programming from governments and international bodies encouraged people to empower themselves against the coronavirus, and a robust program towards personal risk assessment accompanied this effort. Written everywhere, in every PSA and infographic, was the message: “Individuals with pre-existing conditions or who are over 60 years of age may be at greater risk of contracting COVID and developing serious symptoms.” Every other news broadcast seemed to contain updates like: “Increased fatalities among older populations leave care homes and senior living facilities at risk.” Practices including social distancing, mask-wearing, and even wiping down groceries prevailed before spread via surfaces could be confirmed. Officials appeared less wary about making statements that could be rolled back, and empowerment surrounding personal risk and protection were seen as key staples of the pandemic response effort.
What, then, was suddenly the problem?
Lessons learned from the HIV/AIDS epidemic, which started in the US in 1981, provide important context for the current government response to monkeypox. When clusters of rare opportunistic infections (infections common in people with weakened immune systems) among MSM communities were linked to Acquired Immunodeficiency Syndrome (AIDS) in 1982, the disease had already killed over 100 people, the majority of whom were sexually active queer men. But AIDS was not called AIDS in the early 1980s: by May 1982, the New York Times had already established the strange outbreaks of rare infections as “GRID” (Gay-Related Immune Deficiency), associating the disease closely with homosexuality for decades to follow [4].
Over the next several years, the association of AIDS with homosexuality had extensive and widely fatal impacts nationwide, with over one hundred thousand deaths by 1989. In his famous 1983 call to action, “1,112 and Counting,” gay rights activist Larry Kramer writes, “There is no question that if this epidemic was happening to the straight, white, non-intravenous-drug-using middle class, [grant money already held by the National Institutes of Health] would have been put into use almost two years ago, when the first alarming signs of this epidemic were noticed….there would have been… such an outcry from that community and all its members that the government of this city and this country would not know what had hit them.”
It is undeniable that slow progress towards research into a treatment and/or a cure for HIV/AIDS is attributable to public stigma against homosexuals and intravenous drug users. By extension, the critical difference between COVID-19 and monkeypox may also be the communities they impact. This begs the question: when a distinct history of medical prejudice against marginalized communities exists, is it acceptable to frame a disease in this way, even if it’s true?
Beyond HIV/AIDS, stigma has been used to great effect in public health to change populational behavior. One need only look towards movements stigmatizing tobacco usage in the United States for evidence of stigma contributing to positive health outcomes. Since the 1970s, smoking rates have fallen from 37.4% to 13.7% as a result of what is considered one of the most successful stigma-based public health behavioral campaigns of all time [5].
However, even if the health outcomes can be positive, is stigma a constructive strategy for continued beneficial change? HIV/AIDS would suggest otherwise. Ongoing studies about the continued impacts of HIV/AIDS stigma speak to decades of internalized shame among queer populations, dividing gay men over HIV-positivity status and impeding access to care for all [6] [7]. Even in the “successful” case of American smokers, shame may have been misattributed to users rather than a controlling industry: tobacco users report an increased sense of isolation and shame that makes it difficult to get support, successfully quit, or talk about condition-specific struggles with addiction [8].
Indeed, the utilization of stigma as a method for population health-based behavior control consistently results in significant barriers to assessment and treatment that are difficult to overcome [9]. Consequently, when designing a long-term strategy, stigma should undoubtedly be avoided—an idea that certainly guided the WHO’s messaging about monkeypox, and which will continue to be emphasized going forward in future public health emergencies and pandemics.
References
1. World Health Organization. (2022, May 21). Multi-country monkeypox outbreak in non-endemic countries. World Health Organization. Retrieved from https://www.who.int/emergencies/disease-outbreak-news/item/2022-DON385
2. World Health Organization. (2022, May 19). Monkeypox: Fact Sheet. World Health Organization. Retrieved October 29, 2022, from https://www.who.int/news-room/fact-sheets/detail/monkeypox
3. World Health Organization. (2022, July 23). Second meeting of the International Health Regulations (2005) (IHR) Emergency Committee regarding the multi-country outbreak of monkeypox. World Health Organization. Retrieved October 29, 2022, from https://www.who.int/news/item/23-07-2022-second-meeting-of-the-international-health-regulations-(2005)-(ihr)-emergency-committee-regarding-the-multi-country-outbreak-of-monkeypox
4. HIV.gov. (n.d.). A timeline of HIV and AIDS. HIV.gov. Retrieved October 29, 2022, from https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline#year-1983
5. American Lung Association. (n.d.). Overall Tobacco Trends. Tobacco Trends Brief. Retrieved October 28, 2022, from https://www.lung.org/research/trends-in-lung-disease/tobacco-trends-brief/overall-tobacco-trends
6. Smit, P. J., Brady, M., Carter, M., Fernandes, R., Lamore, L., Meulbroek, M., Ohayon, M., Platteau, T., Rehberg, P., Rockstroh, J. K., & Thompson, M. (2011). HIV-related stigma within communities of gay men: A literature review. AIDS Care, 24(4), 405–412. https://doi.org/10.1080/09540121.2011.613910
7. Anderson, B. J. (2009). HIV Stigma and Discrimination Persist, Even in Health Care. AMA Journal of Ethics, 11(12), 998–1001. https://doi.org/10.1001/virtualmentor.2009.11.12.oped1-0912
8. Bayer, R., & Stuber, J. (2006). Tobacco Control, Stigma, and Public Health: Rethinking the Relations. American Journal of Public Health, 96(1), 47–50. https://doi.org/10.2105/ajph.2005.071886
9. Fischer, L. S., Mansergh, G., Lynch, J., & Santibanez, S. (2019). Addressing Disease-Related Stigma During Infectious Disease Outbreaks. Disaster Medicine and Public Health Preparedness, 13(5-6), 989–994. https://doi.org/10.1017/dmp.2018.157