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On June 13, a man in New York began to feel unwell.
“He’s starting to have swollen lymph nodes and rectal discomfort,” said epidemiologist Keletso Macofane of Harvard University.
The man suspects he may have monkeypox. He is a scientist and knows the signs and symptoms, says Macofane. So the man goes to his doctor and wants a test for monkeypox. Instead, the doctor decided to test the man for common sexually transmitted diseases. They all come back negative.
“A few days later, the pain got worse,” Makofane said. So he goes to the emergency room and wants a monkey test again. This time his provider prescribed antibiotics for a bacterial infection.
“The pain becomes so severe and begins to interfere with his sleep,” says Macofane. “So last Sunday he went to the emergency department of a large academic hospital in New York.”
At this point, the man has a growth in 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 wants a test for monkeypox. But the specialist rejected the request and said that “a test for monkeypox has not been shown,” says Macofane. Instead, the doctor suggests that the man may have colon cancer.
A few days later, he developed skin lesions – another key sign of monkeypox.
Misleading case count
At first glance, the monkeypox epidemic in the United States does not look so bad, especially compared to other countries. Since the beginning of the international epidemic in May, the United States has registered 201 cases of monkeypox. In contrast, the United Kingdom has nearly 800 cases. Spain and Germany have more than 500.
But in the United States, the official number of cases is misleading, say Macofane and other NPR scientists. The outbreak is larger – perhaps much larger – than the number of cases suggests.
For many of the confirmed cases, health officials do not know how the person caught the virus. The infected did not travel or come into contact with another infected person. This means that the virus is spreading secretly in some communities and cities.
“The fact that we can’t reconstruct the transmission chain means that we probably lack a lot of connections in that chain,” said Jennifer Nuzo, an epidemiologist at Brown University. “And that means that these infected people have not been able to get medication to help them recover faster and not develop severe symptoms.
“But it also means that they probably spread the virus without knowing they are infected,” she added.
In other words, “We have no concept of the scale of the smallpox outbreak in the United States,” said biologist Joseph Osmundson of New York University. “
Why are so few cases detected? Testing. In many ways, the United States has dropped the ball in monkeypox tests.
Across the country, public health agencies conduct too few tests – too few, Osmundson said. “Government officials refuse people to take tests because they use a narrow definition of monkeypox to decide who gets a test. They only test in a very limited number of cases.”
Take, for example, the man Macofane knows. Eventually, after seeing more than four doctors, the man finally finds an activist trying to expand the tests. The activist connects the man with a doctor who orders a test through a private company (which works for the production of a commercial test.) The result: He is positive. He has monkeypox.
Makofane says the test situation is currently so “ruthless” in the United States that he has launched his own study called RESPND-MI to find out the spread of monkeypox in New York and help his friends share information about the monkey smallpox.
The CDC will not disclose to the NPR how many tests have been conducted across the country, nor will the agency say where the U.S. community transmission is likely to be.
On Thursday, the CDC told New York Times, he performed the 1058 monkeypox test. However, it is not clear how many of these tests are duplicated for the same person. And several sources involved in monkeypox testing doubt that the agency has tested so many cases. A source told NPR that as of last Friday, the CDC had tested about 300 cases. At that time, about 100 of these tests were positive, giving a percentage of positive results of more than 30%.
When the epidemic first began last month, the CDC quickly helped set up testing in about 70 state and local laboratories across the country. Unlike COVID, the agency has already developed a test and is ready to send it to laboratories.
“We need to celebrate this previous investment,” Nuzzo said. “It simply came to our notice then.
Inefficient testing system
But as the need for testing has grown – and the disease has become more common than officials initially predicted – the testing system set up by the CDC has stopped working well because it actually prevents doctors from ordering a monkey measles test.
Suppliers must make every effort to order a test. They must obtain permission and instructions from local or state laboratories, Nuzzo said. The process is cumbersome and often time consuming. Sometimes the doctor has to sit on the phone for hours.
“It’s really the bottleneck we’re worried about,” she said. “We need to throw in a wider network of tests to find the infections we are missing. And that’s really hard to do if we make it cumbersome and difficult for healthcare providers to ask for 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 extensive so that all clinicians feel they can test a patient. Any patient with a suspicious rash.
Both doctors and nurses need to have a better understanding of what monkeypox actually looks like in patients. It is different from what is in medical textbooks. It can manifest itself like many other diseases, including herpes, syphilis and colon cancer.
“Infections are found to a large extent in men who have sex with men, who can usually seek care in a sexual health clinic,” explains Nutso. “These providers may be particularly well educated now about monkeypox and may be more willing to send a sample for testing. But we may not see this level of education and willingness to test with other health care providers who see different types of patients. And that means we can miss infections in different groups of patients. “
On Thursday afternoon, the CDC announced it was working to step up testing in key laboratories commonly used by healthcare providers. And the agency is looking to make testing easier sometime in July.
But Nutso says changes in testing must happen immediately. It should be easier, right now, for doctors to provide samples to laboratories that are already doing this test.
“The weather is not on our side here,” she said. “Every day we linger, we lack links in the transmission chain and allow this outbreak to grow, probably out of control.”
And monkeypox, just like COVID, could become a long-term – perhaps even permanent – problem here in the United States.