Gay and bisexual men who were diagnosed with mpox (formerly known as monkeypox) during the 2022 outbreak in England, faced substantial issues related to stigma and potentially poor-quality care when accessing services, finds a new study led by UCL researchers.
The research, published in eClinicalMedicine, examined for the first time the experiences of those diagnosed with mpox in Europe.
The team hope their findings will shed new light on the needs of individuals who are diagnosed with emerging infectious diseases and highlight the importance of involving affected communities in responses to outbreaks.
An ongoing outbreak of mpox was first confirmed in the UK in May 2022 and by the end of the year, the UK government had confirmed 3,732 cases of the disease. Currently in its second year, cases in Europe are now rare thanks to vaccination and community behaviour change, but mpox continues to impact gay and bisexual men in low- and middle-income countries where vaccination has not always been available.
Researchers held in-depth interviews with 22 cis and transgender gay and bisexual men who were diagnosed with mpox and four stakeholders who were involved in the response, including clinical and community-based organisations.
The interviews asked the men about their experiences of illness, testing, diagnosis, treatment and contact tracing.
From their conversations, the researchers found that mpox had a substantial impact on the well-being of men who were diagnosed with the disease.
For example, sensationalised media coverage that drew on homophobic stereotypes around sex between men, led to feelings of stigma and shame.
Meanwhile, general hospital services and centralised contact tracing were also found in some cases to increase feelings and experiences of stigma, as some staff were perceived to lack skills in supporting men in the LGBTQ+ community, and some lacked clinical knowledge about the condition – leading to delays in diagnosis.
One man involved in the study, said: "It felt like I was – the best way to describe is probably dirty. I felt actually really not self-conscious because I knew that nobody else would see them [mpox lesions] other than obviously the doctors and nurses. But I felt like I was judging myself basically for having them.
"I can remember sitting at home and I was just crying because I was like what do I do about these?"
Lead author, Dr Charles Witzel (UCL Institute for Global Health), said: "Stigma was a central feature of mpox illness and could be worsened or lessened depending on the quality of care received and how sensitive it was to the unique needs of gay and bisexual men.
"Despite struggling with intense workloads, sexual health services and specialist infection disease units usually did a good job providing care for men with mpox, because they were skilled at working with the LGBTQ+ community and managed transmission risks sensitively.
"However, some hospital services such as A&E departments which had less experience of providing care to this group were usually badly equipped to support gay and bisexual men with mpox and, in some cases, treated them very poorly, leading to experiences of stigma.
"In order to improve quality of care for emerging infectious diseases, it is important to include affected communities in the development and delivery of support."
Alongside stigma, some men with moderate and severe mpox experienced longer-term impacts on their health and well-being, ranging from urinary and rectal issues that required specialist management to life-changing disability.
However, pain management was inconsistently provided across all services, especially earlier in the outbreak when less was known about the disease. Additionally, clear and comprehensive information about mpox and how it might progress was not always easy to access.
This caused some men to feel frustrated and abandoned by health services.
Some men in the study also reported experiencing pronounced mental health challenges for several months following physical recovery. Professor Alison Rodger (UCL Institute for Global Health) said: "There is emerging evidence that mpox causes symptoms of anxiety and depression in those affected, and this study shows the added impact that stigma had on the mental well-being of some men. Provision of appropriate aftercare for men affected by mpox should include access to longer term psychological support, if needed."
Mpox was first discovered in 1958, when outbreaks of a pox-like disease occurred in monkeys kept for research. The first human case was recorded in 1970. Historically mpox cases have mostly occurred in Central and West Africa, with limited numbers of cases outside of this region.
Symptoms of mpox include a fever and a blister like rash – which eventually forms into scabs. However, the clinical presentation can vary widely and a highly serious form of mpox has been observed in people who are immunosuppressed, including those with advanced HIV which is not well controlled by medication. An individual is contagious until all the scabs have fallen off and there is intact skin underneath.
However, mpox doesn't spread easily between people unless there is very close contact, such as kissing or other sexual contact. The 2022-24 outbreak has occurred mostly in the sexual networks of gay and bisexual men.
The research was funded by the National Institute for Health and Care Research and conducted in collaboration with the UK Health Security Agency (UKHSA).
