US monkeypox outbreak bigger than CDC reports: Shots

People line up outside the New York City Department of Health and Mental Hygiene on June 23 as the city makes vaccines available for residents who may have been exposed to monkeypox.

Tayfun Coskun/Anadolu Agency via Getty Images

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Tayfun Coskun/Anadolu Agency via Getty Images

People line up outside the New York City Department of Health and Mental Hygiene on June 23 as the city makes vaccines available for residents who may have been exposed to monkeypox.

Tayfun Coskun/Anadolu Agency via Getty Images

On June 13, a man in New York began to feel ill.

“He starts experiencing swollen lymph nodes and rectal discomfort,” says epidemiologist Keletso Makofane, who is at Harvard University.

The man suspects he may have monkey pox. He is a scientist and knowledgeable about signs and symptoms, says Makofane. So the man goes to his doctor and asks for a monkey pox test. Instead, the doctor decides to test the man for common sexually transmitted diseases. All of them come back negative.

“A few days later, the pain gets worse,” says Makofane. So he goes to urgent care and again asks for a monkeypox test. This time, the provider gives him antibiotics for a bacterial infection.

“The pain gets so bad it starts to interfere with his sleep,” says Makofane. “So last Sunday, he goes to the emergency room of a large academic hospital in New York.”

At this point the male has a growth inside the rectum, which is a symptom of monkeypox. At the hospital, he sees an ER doctor and an infectious disease specialist. Again, the man asks for a monkeypox test. But the specialist disputes the request and says that “the monkeypox test is not indicated”, says Makofane. Instead, the doctor speculates that the man may have colon cancer.

A few days later, he develops skin lesions—another major sign of monkeypox.

A misleading case count

On the surface, the monkeypox outbreak in the US doesn’t seem so bad, especially compared to other countries. Since the start of the international epidemic in May, the US has recorded 201 cases of monkeypox. By contrast, the United Kingdom has nearly 800 cases. Spain and Germany have more than 500.

But in the U.S., official case counts are misleading, Makofane and other scientists tell NPR. The spread is greater—perhaps much greater—than the case count suggests.

For many of the confirmed cases, health officials do not know how the person contracted the virus. The infected have not traveled or come into contact with another infected person. This means that the virus is spreading in some communities and cities, secretly.

“The fact that we can’t reconstruct the chain of transmission means we’re likely missing a lot of links in that chain,” says Jennifer Nuzzo, an epidemiologist at Brown University. “And that means that those infected people haven’t had the chance to get drugs to help them recover faster and not develop severe symptoms.

“But it also means they’re probably spreading the virus without knowing they’re infected,” she adds.

In other words: “We have no concept of the scale of the monkeypox outbreak in the US,” says New York University biologist Joseph Osmundson. “

Why are so few cases detected? Testing. In many ways, the US has dropped the ball on monkeypox testing.

Across the country, public health agencies are doing too few tests — too few, Osmundson says. “State officials are denying people testing because they’re using a narrow definition of monkeypox to decide who gets a test. They’re only testing in a very limiting number of cases.”

Take for example the man Makofane knows. Eventually, after seeing more than four doctors, the man finally finds an activist who is trying to expand testing. The activist connects the man with a doctor who orders a test through a private company (which is working to produce a commercial test.) The result: He’s positive. He has monkey pox.

Makofane says the testing situation right now is so “terrible” in the US that he launched his own study, called RESPND-MI, to understand the prevalence of monkeypox in New York City and help friends share information about monkeypox.

The CDC will not disclose to NPR how many tests have been conducted across the country, nor will the agency say where in the U.S. community transmission is likely to occur (NPR emailed the agency several times about these questions, but the press person declined to comment or give an interview.)

On Thursday, the CDC said New York Times, performed 1058 monkeypox tests. However, it is not clear how many of these tests are duplicates for the same person. And some sources involved in monkeypox testing doubt the agency tested that many cases. A source told NPR that, as of last Friday, the CDC had tested about 300 cases. At the time, about 100 of those tests were positive, giving a positivity rate of more than 30%.

When the outbreak first began last month, the CDC quickly helped set up testing in about 70 state and local labs across the country. Unlike with COVID, the agency already had a test developed and ready to send to labs.

“We need to celebrate that earlier investment,” Nuzzo says. “This is what readiness means.

An ineffective testing system

But as the need for testing grew — and the disease became more common than officials first predicted — the testing system the CDC created stopped working well because it actually prevents doctors from ordering a monkeypox test.

Providers should make every effort to order a test. They must obtain permits and guidelines from local or state labs, Nuzzo says. The process is cumbersome and often time-consuming. Sometimes a doctor has to sit on the phone for hours.

“That’s really the barrier we’re concerned about,” she says. “We need to cast a wider net with testing to find the infections we’re missing. And that’s really hard to do if we make it cumbersome and difficult for health care providers to request a test during their busy days.”

Nuzzo says the CDC and local health departments need to remove barriers to testing. “I also want to make testing easier and more widespread so that all clinicians feel they can test a patient. Any patient with a suspicious rash.”

And doctors and nurses need to have a better understanding of what monkeypox really looks like in patients. It is different from what is said in the medical texts. It can appear as many other diseases, including herpes, syphilis and colon cancer.

“Infections have been found primarily in men who have sex with men, who can usually seek care at a sexual health clinic,” explains Nuzzo. “These providers may be particularly well-educated now about monkeypox and may be more willing to send a specimen for testing. But we may not see that level of education and willingness to test with other providers.” healthcare providers, who see different types of patients. And that means we may be missing infections in different patient groups.”

On Thursday afternoon, the CDC announced that it was working to increase testing at key labs that health care providers typically use. And the agency is aiming to make testing easier sometime in July.

But Nuzzo says changes in testing need to happen immediately. It should be easier, right now, for doctors to submit samples to labs that already do this testing.

“Time is not on our side here,” she says. “Every day that we delay, we’re missing links in the transmission chain and we’re allowing this outbreak to grow possibly out of control.”

And monkeypox, like COVID, could become a long-term — perhaps even permanent — problem here in the US

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