On August 13, the Africa Centres for Disease Control and Prevention (Africa CDC)—the African Union’s public health agency—declared mpox (formerly known as monkeypox) a public health emergency. The next day, the World Health Organization (WHO) followed suit after WHO Director-General Dr. Tedros Adhanom Ghebreyesus convened an Emergency Committee under the International Health Regulations to advise him.

As a part of the group of queer and trans activists who first responded to the mpox outbreak in our communities in 2022, we thank Africa CDC and the WHO for issuing these declarations.  We welcome the bolstered public health response to mpox that these declarations should trigger.

These declarations arrive during surging cases of Clade I mpox in the Democratic Republic of Congo and ongoing transmission of Clade II, the variant of mpox that infected and affected queer and trans people and our social and sexual networks in 2022. Clade II causes rash, fever, chills, swollen lymph nodes, exhaustion, muscle ache, backache, headache and respiratory symptoms. The rash can develop into painful blisters, and the virus spreads through close, physical, skin-to-skin contact with the lesion. Our friends who developed these symptoms after infection described it as the worst pain of their lives. The majority of the cases of Clade I mpox in the DRC have been seen in children. The virus is spreading to other vulnerable populations, like sex workers, and eluding diagnostic tests. This variant is also more lethal than Clade II: historically, nearly 1 in 10 patients died when infected with Clade I.

Leadership by public health activists and experts in the Global South, inspired our response to mpox in New York City when we counted cases in queer and trans communities during the first wave of the mpox outbreak in 2022. Queer and trans activists leveraged lessons learned from organizing in the global AIDS response to establish Rapid Epidemiologic Study of Prevalence, Network, and Demographics of Mpox Infection (RESPND-MI). Queer and trans experts in clinical medicine, epidemiology, biostatistics, activism, policy, marketing and communications joined the RESPND-MI study team. Together, we rapidly developed an anonymous, online survey that collected information on the social and spatial networks connecting queer and trans people in New York City. The aim was to identify places and groups of people to prioritize for interventions to slow the spread of mpox, data which we shared with local public health agencies distributing a limited supply of vaccine.

To recruit queer and trans participants in the survey, the RESPND-MI study team launched a creative health education campaign across social media and Grindr, where queer and trans people often go to look for sex. The look and feel of the campaign played off emojis, which queer and trans people often use for talking about sex. We engaged queer and trans influencers from pop culture—like RuPaul’s Drag Race, Pose, and The Real Housewives—to record a video for social media, encouraging participants to take the survey and to learn more about prevention, testing and treatment. The RESPND-MI study team published recommendations for safer sex and health policy, recommendations that public health agencies later adopted.

The RESPND-MI study team not only innovated community-based participatory research and social network epidemiology, but it also served as one of the first coordinating mechanisms for the LGBTQ community. At the start of the outbreak, the RESPND-MI study team noticed that our community lacked a space for sharing knowledge. To fill this gap, we scheduled the RESPND-MI LGBTQ Community Forum, a weekly call where more than 80 queer and trans researchers, government officials, health care providers, journalists and party promoters broadcasted updates about the evolving outbreak.

We offer the work we completed along with the team of activists and academics in the RESPND-MI study as an example of a community-led, coordinated response, which coordinated action at the same time as collecting crucial information. Locally and globally, public health agencies must provide epidemiologists with the resources to measure the social and sexual networks of vulnerable populations in order to enable an efficient response. In an election year, our elected officials must heed the lessons learned from HIV and COVID-19 to prevent a worsening outbreak. We must initiate a coordinating mechanism to prepare for a worsening outbreak. We must invest in public health to scale dissemination of health education materials and to minimize barriers for easily accessing affordable vaccination, testing, and treatment. This moment requires an efficient response, one that maximizes limited resources using innovations in community-based participatory research and social network epidemiology.

Keletso Makofane is a social network epidemiologist at Center for Causal Inference at University of Pennsylvania and principal investigator of RESPND-MI. Nicholas Diamond is a student in the Pipeline to Justice Program at The City University of New York School of Law and co-investigator of RESPND-MI.