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Problems with monkeypox testing mean the outbreak may be far bigger than reported

Researchers say the U.S. monkeypox outbreak is much larger than the CDC is reporting. Symptomatic people are being denied testing, so it's unclear how many people are infected and spreading the virus.

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Transcript:

AILSA CHANG, HOST:

There's growing concern that the monkeypox outbreak in the U.S. is much larger than the official case count suggests. For example, in New York City, there are only around two dozen known cases. But the health department there announced today that it's expanding its vaccination program. Overall in the U.S., there are only about 160 confirmed cases, but scientists say that number is misleading.

Well, here to explain more about what's going on with monkeypox is NPR's Michaeleen Doucleff. Hey, Michael.

MICHAELEEN DOUCLEFF, BYLINE: Hi, Ailsa.

CHANG: OK. So what is the evidence that this outbreak is bigger than the confirmed case numbers?

DOUCLEFF: Yeah. So for many of the confirmed cases, health officials don't know how the person caught monkeypox. They haven't traveled or come into contact with another infected person. So that means the virus is likely spreading cryptically in some cities and some states.

CHANG: Well, why are there so many cases that could be getting missed? Like, hasn't the CDC been alerting the public and doctors about this for weeks now?

DOUCLEFF: Yeah, we have on this show.

CHANG: We have.

DOUCLEFF: But to put it bluntly, the U.S. has pretty much dropped the ball on monkeypox testing. I was talking to Keletso Makofane about this. He's an epidemiologist at Harvard University. He says the testing situation right now is abysmal. And he went on to tell me about a person he knows who started having symptoms of monkeypox last week.

KELETSO MAKOFANE: He starts to experience swollen lymph nodes and rectal discomfort.

DOUCLEFF: So the man goes to see a doctor and tells the doctor specifically, I think I have monkeypox; please test me. But the doctor doesn't.

MAKOFANE: The pain worsens so bad that it interferes with his sleep. So Sunday, this past Sunday, he goes to a big academic hospital, the emergency room, in New York.

DOUCLEFF: And again, the man tells doctors, please test me for monkeypox. At this point, the man has a lesion, which is another key sign of it. The next time - this time, though, the doctors, including an infectious disease specialist, tell the man he might have colon cancer.

CHANG: Oh, my God. Really?

DOUCLEFF: Yeah. Makofane says this person is a scientist and has, you know, really, access to the best doctors in the world and the best medical knowledge out there. And so if he can't get a test, then really, who can?

CHANG: Yeah.

DOUCLEFF: Eventually, this man does actually, though, reach out to an activist and a doctor working to increase testing access. And then he finally gets a monkeypox test after seeing more than four doctors.

CHANG: Geez. And the results of that test?

DOUCLEFF: Yeah, he was positive. You know, Makofane is working directly with federal health officials on this outbreak, and he actually launched his own study to try to figure out how common scenarios like this are in the U.S. right now.

CHANG: So do researchers know what's keeping doctors from ordering tests?

DOUCLEFF: So right now, there seem to be two big problems. First, many doctors and nurses don't actually know what monkeypox looks like in the clinic. It's different than what it looks like in medical textbooks. And public health agencies haven't gotten that message across about what to be on the lookout for.

Second, the current testing system that the CDC has set up makes it very difficult for doctors to order tests. I was talking to Jennifer Nuzzo about this. She's an epidemiologist at Brown University. She says providers have to go out of their way to order a test. The process is cumbersome and time consuming, and sometimes they have to sit on the phone for hours.

JENNIFER NUZZO: We need to make it as easy as possible for clinicians to send specimens to the laboratories. Time is not on our side here. You know, every day delay, we are missing links in the transmission chains and allowing this outbreak to grow possibly beyond control.

DOUCLEFF: Which means monkeypox could become a permanent problem in the U.S.

CHANG: So what is the CDC doing to fix these problems?

DOUCLEFF: So it says it's working to ramp up testing at the main labs that health providers use, and they're aiming to make this testing easier sometime in July. But the agency declined to comment on anything beyond that.

CHANG: That is NPR's Michaeleen Doucleff. Thank you so much, Michaeleen.

DOUCLEFF: You're welcome, Ailsa. Transcript provided by NPR, Copyright NPR.