A British study finds that beyond the physical pain and turmoil of an mpox diagnosis, many of the mostly gay and bisexual men infected during the 2022 outbreak faced stigma, homophobia and shame.

Mpox is spread largely through skin-to-skin contact, and the outbreak in Europe and the United States was largely localized to men who have sex with men. Cases were first detected in May of 2022, and the outbreak peaked in August. A vaccine against the disease had already been approved by the U.S. Food and Drug Administration in 2019 and was rolled out to at-risk people once the outbreak emerged.

According to the U.S. Centers for Disease Control and Prevention, the outbreak of mpox (formerly known as monkeypox) viral illness in the United States sickened more than 32,000 people and killed 58. In the United Kingdom, there were over 3,700 confirmed cases of mpox.

The illness is characterized by painful skin lesions that form scabs, and it can be especially harmful in people infected with HIV.

In the new study,  a team led by Dr. Charles Witzel, of the University College London (UCL) Institute for Global Health, conducted in-depth interviews with 22 gay and bisexual men who’d been diagnosed with mpox during the outbreak.

The interviews focused on their experience with the illness itself, as well as the men’s interactions with health care services — testing, diagnosis, treatment and contact tracing.

These patients often suffered mental distress, the interviews showed.

Many cited what they saw as sensationalized media coverage of the outbreak that repeated homophobic stereotypes about gay and bisexual men. These reports led to feelings of stigma and shame, many of the men said.

Some of this homophobia and stigma was evident even in interactions with health care services, they added. Many staff seemed to be insensitive and unsupportive of LGBTQ+ patients, and others lacked basic knowledge about mpox disease itself.

“It felt like I was — the best way to describe is probably dirty,” one former patient told the researchers. “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?,'” he said.

According to Witzel, “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.”

He said that clinics that already specialized in sexual health services and specialist infection disease units at hospitals were much less stigmatizing of patients, because they were used to caring for the LGBTQ+ community.

“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,” Witzel said in a UCL news release.

“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,” he noted.

There was also inconsistent levels of pain management for patients, and (especially early in the outbreak) it was tough to get good information on the illness, former patients said.

Many of the patients were left with lingering symptoms long after the initial illness resolved. These included urinary and rectal issues that required specialist management, as well as disabilities that could be life-changing, the study found.

The emotional toll of surviving mpox often lingered for many months.

The findings were published recently in eClinicalMedicine.

“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,” said study co-author Alison Rodger, also at UCL Institute for Global Health.

“Provision of appropriate aftercare for men affected by mpox should include access to longer term psychological support, if needed,” she said.

More information

Find out more about mpox at the World Health Organization.

SOURCE: University College London, news release, April 18, 2024

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