The monkeypox epidemic in the United States is larger than the CDC reports. The tests are “abyssal”

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

Tayfun Coskun/Anadolu Agency via Getty Images

On June 13, a man in New York began feeling unwell.

“He’s starting to have swollen lymph nodes and rectal discomfort,” says epidemiologist Keletso Makofane, from Harvard University.

The man suspects he might have monkeypox. He’s a scientist and he knows the signs and symptoms well, says Makofane. So the man goes to his doctor and asks for a monkeypox test. The doctor decides, instead, to test the man for common sexually transmitted diseases. All of these come back negative.

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

“The pain gets so intense and starts interfering with his sleep,” says Makofane. “So last Sunday he went to the emergency room of a major teaching hospital in New York City.”

At this point, the man has a lump inside his rectum, which is a symptom of monkeypox. At the hospital, he sees both an emergency doctor and an infectious disease specialist. Again, the man asks for a monkeypox test. But the specialist rejects the request and says “a monkeypox test is not indicated”, says Makofane. Instead, the doctor speculates that the man might have colon cancer.

A few days later, he develops skin lesions – another key sign of monkeypox.

A misleading number of cases

At first glance, the monkeypox outbreak in the United States doesn’t look that bad, especially compared to other countries. Since the start of the international epidemic in May, the United States has recorded 201 cases of monkeypox. In contrast, the UK has nearly 800 cases. Spain and Germany have more than 500.

But in the United States, the official case count is misleading, Makofane and other scientists told NPR. The outbreak is bigger – perhaps much bigger – than the number of cases suggests.

For many confirmed cases, health officials don’t know how the person caught the virus. Infected people have not traveled or been in contact with another infected person. This means that the virus is spreading in certain communities and cities, in an encrypted way.

“The fact that we can’t reconstruct the chain of transmission means we’re probably missing a lot of links in that chain,” said Brown University epidemiologist Jennifer Nuzzo. “And that means those infected people haven’t had the opportunity to receive medication to help them recover faster and not develop serious symptoms.

“But it also means that they may be spreading the virus without knowing they are infected,” she adds.

In other words: “We have no idea how big the monkeypox epidemic is in the United States,” says New York University biologist Joseph Osmundson. “

Why are so few cases detected? Test. In many ways, the United States has dropped the ball on monkeypox testing.

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

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

Makofane says the current testing situation is so “appalling” in the United States that he launched his own study, called RESPND-MI, to determine the prevalence of monkeypox in New York and to help his friends share information about the monkepox.

The CDC will not disclose to NPR the number of tests performed across the country, nor will the agency say where community transmission is likely occurring in the United States (NPR sent several emails to the agency at about these matters, but the news person declined to comment or provide an interview.)

On Thursday, the CDC told the New York Times, he performed 1,058 monkeypox tests. However, it is not known how many of these tests are duplicates for the same person. And several sources involved in monkeypox testing doubt the agency has tested so many cases. A source told NPR that as of Friday, the CDC tested about 300 cases. At that time, about 100 of those tests were positive, a positivity rate of over 30%.

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

“We should celebrate this earlier investment,” says Nuzzo. “That’s what preparation means.

An inefficient testing system

But as the need for testing grew — and the disease became more common than authorities initially predicted — the testing system put in place by the CDC stopped working well, because it actually deters doctors from ordering a monkeypox test.

Providers should make every effort to order a test. They must receive permission and instructions 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.

“It’s really the bottleneck that worries us,” she says. “We need to cast a wider net with tests to find the infections we’re missing. And that’s really hard to do if we make it cumbersome and difficult for healthcare 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 like they can test a patient. Any patient with a suspicious rash.”

And doctors and nurses need to better understand what monkeypox actually looks like in patients. It’s different from what’s in the medical textbooks. It can present like many other diseases, including herpes, syphilis, and colon cancer.

“Infections have been widely detected in men who have sex with men, who can usually seek treatment at a sexual health clinic,” says Nuzzo. “These providers may be particularly knowledgeable about monkeypox and be more willing to send a sample for testing. But we may not see this level of education and willingness to test with other healthcare providers. , who see different kinds of infections and that means we can miss infections in different patient groups.”

On Thursday afternoon, the CDC announced that it was working to ramp up testing at major labs that healthcare providers normally use. And the agency aims to facilitate testing in July.

But Nuzzo says the changes to testing must happen immediately. It should be easier now for doctors to submit samples to laboratories that already perform these tests.

“Time is not on our side here,” she said. “Every day that we delay, we are missing links in the chain of transmission and allowing this outbreak to grow perhaps beyond control.”

And monkeypox, like COVID, could become a long-term — maybe even permanent — problem here in the United States.

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