CNN) -- A
version of this story appeared in CNN's Race
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The Biden
administration this month declared the outbreak of monkeypox, a virus spreading
disproportionately among men who have sex with men and their sexual
networks, a public health emergency.
Not wanting to
reproduce the kind of anti-gay stigma seen during the early AIDS crisis, some argue that
articulating which group is at highest risk for monkeypox infection might be
dangerous.
Yet experts
say that the insistence on generalizing warnings both hurts outreach to the
most vulnerable people, including Black and Latino men, and oversimplifies the
lessons of the AIDS crisis, which illuminated the importance of battling
stigma and pushing for care for those who needed it.
"We don't
want to add stigma to a delicate situation, but then our messaging becomes so
broad that nobody knows which people we're speaking to -- and that becomes a
real problem," Robert Fullilove, a professor of clinical sociomedical
sciences at the Columbia University Medical Center, told CNN.
In short,
experts say that we shouldn't tiptoe around the issue. Instead, we should face
it directly, and keep an eye toward expanding access to care.
What the early
data show
Part of the
issue with talking about monkeypox in oblique terms is that we end up
overemphasizing who can get the virus and downplaying
who does get it, according to Melanie Thompson, an
Atlanta-based HIV physician and researcher.
Take a
detailed breakdown of monkeypox case records that the US Centers for Disease
Control and Prevention published this month. Anyone can get the virus, yes, but
the CDC analysis shows that 94 percent of cases were among men who had recent
sexual or close intimate contact with another man. Further, 54 percent of cases
were among Black Americans and Latinos.
Early data
from the Georgia Department of Public Health and the North Carolina
Department of Health and Human Services show a similar pattern: In
both states, monkeypox is overwhelmingly affecting Black men.
Thompson
underscored the importance of clarity, of communication that spells out where,
precisely, the virus is.
"The
purpose of data isn't just to crunch numbers -- but to ensure that the people
most impacted by monkeypox or any other disease entity are getting the services
that are required," she said.
Thompson
added, "The message that anybody can get monkeypox spreads fear among the
general population. It distracts from the messaging we need to get to people at
risk for monkeypox infection."
And this kind
of obfuscation doesn't merely distract. It marginalizes in a different way, she
said.
Jim Downs, an
epidemic disease historian at Gettysburg College and the author of "Maladies of Empire: How Colonialism, Slavery and War
Transformed Medicine," echoed some of Thompson's sentiments.
"The
evidence shows that men who have sex with men are at a higher risk than any
other population or group," he said. "So when we talk about directing
messages and, more importantly, directing vaccines, we need to make sure that those
efforts are purposely targeting the people at highest risk, as opposed to
people who might think, 'Well, why not get vaccinated? It's just a good
idea.'"
It's worth
underlining, experts say, that while Black men appear to bear the majority of
monkeypox cases, it's not because they're Black.
"When we
use race as a way of identifying an important characteristic of a person who's
ill, some people think that race is biologically active -- there must be
something about brown skin that makes becoming infected with monkeypox more
likely," Fullilove said. "But that's not the case. What we're looking
at is the dynamic of who hangs out with whom and where they socialize."
Thompson also
injected a note of caution into the conversation.
"There
isn't any sort of racial predilection to monkeypox," she said. "It
has to do with structural racism and the nature of communities and cultural
practices."
She said that
Georgia, for instance, is still very segregated along lines of race and
sexuality.
"This
means that people who are Black are likely to have sexual partners who also are
Black," Thompson explained. "And because they're a smaller proportion
of the population, there's a higher likelihood of coming into contact with the
virus."
If there's a
silver lining, it's that it ought to be easier to contain and eradicate
monkeypox because we have a more concrete sense of where the bulk of the
infection is.
'AIDS activism
wasn't just about saying the right thing'
The push by
some for generalized monkeypox messaging is based on good intentions, and seeks
to stave off the ferocious anti-gay stigma seen during the AIDS crisis in the
1980s and '90s.
Yet that
approach strips the period of some of its complexity.
"I think
that there's a very well-meaning attempt not to contribute to anti-gay stigma.
Lots of people have a broad sense of how that worked in the context of the
early AIDS epidemic. I don't think that it's necessarily a nuanced
understanding of how it happened, but there is an awareness that it happened
and a sense that we shouldn't do it again," Dan Royles, an associate
professor of history at Florida International University and the author of
"To Make the Wounded Whole: The African American Struggle
Against HIV/AIDS," told CNN, adding that all this is occurring in the
context of a right-wing assault on LGBTQ rights.
Royles said
that AIDS activists' ambitions were vast; they extended beyond the realm of messaging.
"AIDS
activism wasn't just about saying the right thing," he explained. "It
was about getting care to the people who needed it."
Consider some
of the work of the AIDS-fighting organization ACT UP (the AIDS Coalition to
Unleash Power). On May 21, 1990, more than 1,000 protesters stormed
the National Institutes of Health in Bethesda, Maryland. Their purpose: to
urge the NIH to correct what activists saw as the glacial pace of AIDS research
and treatment efforts.
In other
words, faced with the government's inadequate response to the epidemic,
activists took matters into their own hands and fought for a more humane health
system. (Notably, present-day queer communities are doing something similar,
as they grapple with sluggish state efforts to counter monkeypox.)
This isn't to
diminish the value of careful, empathetic messaging.
Thompson
thinks that there's a high level of stigma attached to monkeypox. She said that
physicians are hearing from some patients that they're ashamed to have the
virus.
Complicating
matters further, she added, is the fact that there are care providers who don't
want to see people with monkeypox -- meaning that those with the virus have
fewer places to get treatment.
Clearly,
messaging that doesn't shame matters a great deal, and is partly influencing
the ongoing debate over whether to call monkeypox a sexually transmitted disease, as my CNN colleague Jacqueline Howard recently reported.
Still, Royles'
deeper point is crucial. As we continue to confront monkeypox, we shouldn't
lose sight of the fact that the chief goal is widening access to care.
"Our
politics often gets boiled down to debates over discourse and messaging that
are divorced from the material reality of people's lives," Royles said.
"Not unlike HIV and AIDS, monkeypox has significant material consequences
in your body if you get it. It's so embodied that it's deeply ironic that so
much of the conversation is focused on discourse, which is disembodied
in so many ways."
Or as Joseph
Osmundson, a clinical assistant professor of biology at New York
University, aptly summarized the difficulty of getting access to care,
"You cannot message away an infectious disease. We need tests, treatments
and vaccines, none of which came in time."
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SOURCE: HIV PLUS MAG
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