In the past week, data has shown how the monkeypox outbreak has been disproportionately impacting Black and brown folks in the LGBTQ+ community in the U.S. We’ve seen these communities bear the brunt of illness and governmental failures to control viruses in the past, perhaps most notably with COVID-19 and with the HIV pandemic. And with the monkeypox virus — which is related to the smallpox virus but causes milder illness — cases have come hand and hand with stigma, with intersectional minorities being hurt the most. And the messaging around the issue is fraught, with LGBTQ+ and Black and brown people seemingly most at risk for infection right now, but also being stigmatized for the spread of a virus that impacts us all. Meanwhile, white folks are reportedly getting the most access to healthcare related to the virus.
So, how did we get here?
When news of the multi-country monkeypox outbreak began this May, some patients pointed out to Cassandra Pierre, MD, medical director of public health programs and the associate hospital epidemiologist at Boston Medical Center, that many of the photos in news stories about the virus featured mostly Black people. This could be stigmatizing, they worried, even if journalists were just using the stock photos that were available based on previous cases, as the infection is endemic to parts of Africa. “Now we have more equitable representation,” Dr. Pierre says. “But initially there was a concern that this would be further stigmatizing to people of color based on the representations of the disease.”
Concerns around monkeypox virus stigma also extend to the LGBTQ+ community. So far, cases have been spreading primarily among men who have sex with men. The current outbreak is thought to be related to two raves that occurred this spring in Spain and Belgium that were primarily attended by men who have sex with men, David Heymann, MD, an advisor to the World Health Organization, told media. Since, the Centers for Disease Control and Prevention (CDC) has said that this cohort is at “high risk” of being infected. A New England Journal of Medicine article looking at infections diagnosed between April 27 and June 24 of this year came to the same conclusion, noting that 98% of those infected identified as gay or bisexual men.
Monkeypox has mainly spread through skin-to-skin contact, including during sex, or when kissing, cuddling, or touching for prolonged periods — though it can also spread by touching items like clothing or bedding that previously touched the rash, via respiratory droplets, or from parent to fetus during pregnancy.
But because of the former, some in the medical field controversially compared it to a sexually transmitted infection — although, again, anyone can get the monkeypox virus, and it’s not only spread through sexual contact. “Monkeypox is not an STI,” Dr. Pierre adds. “It’s predominantly men who have sex with men who get it, and is prevalent among people of color, but this is potentially due to structural marginalization. That being said, we’re actively seeing cases in other populations — children and pregnant people — and so it’s important to know that monkeypox can and will affect every population.”
The CDC has said that minority groups are being disproportionately affected by this virus. Of the data available in the 2,891 cases in the U.S. reported through July 22, 54% impacted Black and Latinx people, but only 32% of Americans identify this way, according to an August 12 CDC report. And in Georgia, where Walker is based, of the 749 known monkeypox cases reported on Aug. 10, of the data available, 82% of cases are in Black people, though the state’s Black population is 30% (the number of total cases is likely higher than the official statistic). In North Carolina, 70% of people with monkeypox are Black, but only 24% of vaccines have gone to Black recipients and only about 21% of the state’s population is Black. For this reason, some have criticized the Biden Administration (beyond its general response) for not mentioning the virus’s disproportionate impact on Black Americans on a call in which they declared monkeypox a national emergency, meaning it wasn't as widely reported.
Though monkeypox racial disparities aren’t showing up in every set of state demographic data that’s been released (yet), they’re still important to listen to and note — experts worry that the national data aren’t telling the whole story of racial disparities because not every state is reporting cases as quickly as they should or sharing fully accurate racial demographic information about their cases yet.
Meanwhile, the stigmatization Dr. Pierre spoke about has already led to discrimination. It’s led to people worrying about touching certain groups of people, based on a misunderstanding of the most common ways it spreads; and to making assumptions about people who get it. There’s been demonizing and slut-shaming and homophobia that’s come along with this virus, often due to misinformation and misunderstandings. “The only thing that challenges stigma is information and self-love," says Larry Walker, an activist, author, man living with HIV, and the executive director of Transforming HIV Resentments into Victories Everlasting Support Services (THRIVE SS).
Many doctors agree that stigmatizing monkeypox as a virus that only impacts LGBTQ+ folks, especially people of color, could lead to many of the same mistakes we made during the early days of HIV, when homophobia in government impacted research, treatments, and the way information was disseminated, says Kenneth Mayer, MD, the medical research director at Fenway Health and a professor at Harvard who’s been studying HIV since the beginning in the '80s. (For the record, these two viruses are markedly different in many ways — when the HIV pandemic first started, we didn’t know what that virus even was. With monkeypox, we already have a vaccine and deaths are fairly rare).
Walker adds that drawing comparisons between HIV and monkeypox, as has been done, must be much more nuanced. “It’s important to learn from HIV to inform our responses to everything as we go forward, but to compare the diseases is an act of futility,” he says. “Why would you even do that? Not as many people have died from monkeypox, and it’s not the same… However, we see some similarities and it’d be irresponsible of us not to honor and note them. It’s impacting a similar community, and based on the ways that the community was alienated and stigmatized and oppressed, we can learn from that. If we didn’t, we’d be shooting ourselves in the foot.”
Yet, there are already some concerning trends that echo history. White men appear to be accessing the vaccine at the highest rates. There’s also worry in the medical community that this group will have the most access to vaccines, and to the public health information they need about monkeypox, Dr. Pierre says.
Getting treatment to those most in need is proving difficult, both due to a lack of vaccine supply as well as a warranted lack of trust in the medical establishment due to racism and homophobia.
In order to avoid stigmatizing monkeypox while also making sure that those who are most at risk get the care they need, we need to acknowledge that anyone can get monkeypox, and this is something we should all be concerned about treating and getting under control epidemiologically. But we also need to make sure we’re prioritizing getting good information and healthcare, such as vaccines and treatments, to those who are most impacted, Dr. Mayer says. "We need to hold those two things at once," he adds.
To better reach Black and brown communities, Dr. Pierre says there needs to be more community outreach and better general public messaging. If someone comes into a clinic or urgent care who may be at high risk, the healthcare provider they see should recommend the monkeypox vaccine. She adds that more information on monkeypox in various languages should also be disseminated. The government and global community need to do better in preparedness and reaching communities needing healthcare.
Walker agrees. “I think the messaging from the government should be better, not that I’m trying to diss them,” he says. “That’s why the partnership between the public and the government is so important. We speak to people they don’t [speak to], and we are arming the communities we speak to with as much real, factual information that’s possible.” He adds that working together is the only way to get monkeypox under control.
“We need as many people represented as possible, that’s important,” he says. He recently met with public health officials on behalf of THRIVE SS, and said that he was inspired by the fact that there was a really diverse group of people sitting at the table. “It takes that type of coalition to make inroads,” he says. “We need Black trans groups, Black cis groups, Black straight groups, all races, religious organizations — everyone. Everyone needs to care about this.”