Andy, a 37-year-old New York City resident, developed excruciating rectal pain after returning from Portugal, an early epicenter of the global monkeypox outbreak.
“It felt like someone was poking me from the inside with a hot fork,” he recalls (“Andy” is a nickname). But he lacked the external sores required to test for monkeypox. Over the course of a week, he visited two urgent care doctors and a hospital emergency room, only to be tested for STDs, given antibiotics and told he might have cancer.
He eventually developed a few external lesions that could be swabbed. Three days later the test came back positive for monkeypox. After some “arm-twisting,” he was able to get TPOXX, an antiviral drug that can be used for treatment, and his symptoms disappeared. “I was so lucky I had friends who were connected,” he said. “Without that, I would probably still be in pain.”
Across the country in San Francisco, Aaron Backman, 33, faced similar frustrations. After getting no response from the sexual health clinics recommended by the Department of Public Health, he got tested at OneMedical, a chain clinic. “If I would have waited, I still wouldn’t be tested by now,” he said. He’s had less luck getting TPOXX, despite having symptoms for two weeks, including a lesion in his throat that “feels like I’m swallowing razor blades.”
Nearly 800 cases of monkeypox have been reported in the United States as of July 8, but, because getting a test can be so hard, no one thinks this reflects the full extent of the outbreak. And while most cases so far have been among gay and bisexual men, anyone can get monkeypox through close personal contact. Some fear the virus is going undetected in other groups.
Related to smallpox but less deadly, monkeypox is endemic to some countries in Africa. Mainly transmitted via skin-to-skin contact, the virus can cause flu-like symptoms and a rash anywhere on the body. Like Andy, many men in the current outbreak have had lesions on the genitals or in the anal area, suggesting it’s easily transmitted during sex. In contrast to the coronavirus, we have more pharmaceutical tools on hand to fight the outbreak as it emerges. But already, some mistakes are being repeated. Monkeypox spreads more slowly than COVID (it does not appear to be airborne), and has caused no deaths in the current global outbreak, in countries where monkeypox is not endemic. The concern in the US—in addition to getting vaccines and treatment to those who need them—is that if the virus spreads too widely, it could be here to stay.
“The continuing challenges to get testing for monkeypox is frustrating both for individuals who have symptoms and for clinicians like myself,” said Dr. Boghuma K. Titanji, an assistant professor of medicine at Emory University. “This has implications for who gets prioritized in a vaccination rollout. Is it only men who have sex with men or are there other high-risk groups we’re missing? Testing is the key piece in getting answers to these questions, and currently we simply are not doing enough of it.”
Testing for monkeypox has been cumbersome and time-consuming. Though things are now speeding up—the Centers for Disease Control and Prevention is decentralizing the process—valuable time has been wasted. Here’s how it has worked for weeks: Clinicians who see a suspected case contact their local or state health department for authorization to run a test, which involves swabbing a lesion on the skin. The first round of testing for orthopox (the virus family that includes smallpox and monkeypox) is done at some 80 public health labs that comprise the Laboratory Response Network. If the test is positive, the sample is forwarded to the CDC for a definitive diagnosis.
This process worked well enough when there were only a few cases scattered across the country, but the approach didn’t scale. New York City, the outbreak’s U.S. epicenter, can test only 10 people per day. The CDC’s monopoly on testing early in the COVID-19 pandemic helped the coronavirus get out of control. Some worry that the same problem is playing out again now.
“The barriers to testing, including the early reliance on the CDC and waiting for people to present at sexual health clinics or to primary care—when some may not have easy access to either—means we’re likely undercounting [mokeypox] cases to a considerable degree,” said Gregg Gonsalves, an associate professor of epidemiology at Yale School of Public Health. “If you can’t test, you can’t trace and have no idea where an outbreak is going.”
Advocates and health care providers who have been screaming for more tests will soon get their wish—but many think this decentralization should have happened sooner.
In late June, the CDC began shipping orthopox tests to five large commercial labs, which the agency promised would dramatically expand testing capacity nationwide. The move will allow providers to send swab samples to labs they already work with, removing the reliance on state labs. The CDC has also published guidance for labs that wish to develop their own tests.
“What we’re trying to do is increase testing access and convenience in every community,” Dr. Raj Panjabi of the White House National Security Council told reporters during a June 29 briefing. “They send tests for herpes, they send tests for chickenpox, they send tests for other conditions to these labs. We’re trying to make it that easy for folks to get a [monkeypox] test.”
Current tests can only be done on people who have lesions to swab, but saliva or throat swab tests could enable easier diagnosis, potentially including those who have been exposed but not yet developed symptoms. “Early detection can lead to faster contact tracing and isolation of infectious cases, reducing transmission,” said Dr. Jay Varma, a professor of population health sciences at Weill Cornell Medical College. FlowHealth, which is developing a monkeypox saliva test that it plans to offer to the public next week, learned of Andy’s plight on Twitter and obtained a saliva sample, which tested positive before his lesion swab.
In addition to contact tracing and notification, prompt testing would also allow close contacts to get vaccines and those with severe cases to get antivirals—if they can find them. Because the monkeypox virus has a long incubation period, vaccines work both as post-exposure prophylaxis within several days after exposure, and as pre-exposure prophylaxis for those at risk.
Given limited testing and the challenges of contact tracing when people have sex with casual partners or attend large gatherings, the CDC has expanded vaccine eligibility beyond known close contacts to include those who are likely to have been exposed, for example, men who have recently had sex with multiple partners, frequented venues where the virus was present or live in communities where it’s spreading.
But, like testing, monkeypox vaccines have been in short supply. The Department of Health and Human Services has distributed some 65,000 doses of the new Jynneos vaccine, with another 240,000 doses on their way, according to Panjabi. The federal government expects a total of 1.6 million doses this year, but advocates say this isn’t fast enough. James Krellenstein of the HIV advocacy group PrEP4All said that more than a million finished doses are ready to go at the Bavarian Nordic factory in Denmark—the White House has confirmed this to news outlets—but are being held up by bureaucratic hurdles.
Coming on the heels of Pride festivities, expanded testing will likely lead to a surge in the number of monkeypox cases. But this doesn’t mean case counts will continue to rise at the same steep clip—the rollout of vaccinations should help with that.
As testing and vaccination ramp up, it will be critical to get these tools to everyone who could benefit, not just those who are aware of the outbreak and have time to track down tests and make vaccine appointments online. This might mean doing testing and vaccination at festivals, sex clubs and bathhouses.
“The response to monkeypox has to avoid deepening health inequities across race, class, and geography,” Keletso Makofane, a social network epidemiologist at Harvard University’s FXB Center for Health and Human Rights, told Slate. “Offering testing and vaccination erratically, without advance notice, and only in the most affluent gay neighborhoods entrenches the already stark inequities in access to health care.”
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Monkeypox testing: Why the outbreak might be bigger than we think - Slate
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