Durham man’s hurdles to get monkeypox test reveal gaps in North Carolina’s readiness

A Durham man with symptoms of monkeypox and many reasons to think he had the virus began calling healthcare providers to get a test on July 1.

A week later, after seeking help from his primary care doctor; county, state and federal health officials; an urgent care clinic; and a hospital emergency room, he still had no test.

Fifteen days after he first noticed the lesions that are the viral illness’ signature on his face, he found a provider willing to order a test, which came back positive.

“It seems absurd,” said the man, who The News & Observer is not naming for privacy and safety reasons.

The man’s ordeal reveals enduring gaps in North Carolina’s preparedness for the latest infectious disease outbreak, according to public health experts.

“Clearly what has happened is providers are not reading our guidance, not paying attention and not on the same page,” the state’s top health official, Kody Kinsley, told the man in a phone call Tuesday, according to a recording provided to The News & Observer.

Dr. David Wohl, an infectious disease expert at the UNC School of Medicine, said North Carolina still doesn’t have an effective way of making sure that front-line workers get crucial information about how to respond to emerging threats two years after COVID-19 exposed a host of problems with the state and nation’s public health response.

All this matters because delays in diagnosis and intervention help a virus spread.

EIGHT DAYS, WORSENING SYMPTOMS, NO ANSWERS

From reading the news, the 29-year-old man knew that he had risk factors. He had recently returned home from Oslo, Norway, where there was a confirmed outbreak, and he is a man who has sex with men who had more than one sexual partner during the trip.

Although monkeypox is not a sexually transmitted disease, it is transmitted through close physical contact and recent spread has affected the LGBTQ community.

He first noticed sores at the corners of his mouth. A few days later, other symptoms set in: a fever, muscle aches and swollen lymph nodes.

He called Duke Family Medicine, his primary care practice, on July 1, the man said. The person he reached on the phone said the practice did not do tests and referred him to the Durham County Health Department, he said.

The health department referred him back to his primary care practice, he said.

Frustrated, he called the U.S. Centers for Disease Control and Prevention, he said.

But his dismay only grew.

The person on the phone recommended that the man seek a test from either his primary care doctor or the county health department, he said. With both his primary care practice and the health department referring him to each other, he wasn’t sure where to turn.

And his symptoms were worsening.

On July 2, while out of town visiting family, he made an appointment with an urgent care clinic in Salisbury, he said. A physician’s assistant ordered tests for COVID, strep and flu, all of which came back negative, he said.

The PA told him the sores on his mouth were not signs of monkeypox, the man said. Monkeypox isn’t a real threat yet. We’re going to have to confront it soon. It’s just not here, he recalled the PA saying.

But state officials had announced the first case of monkeypox in the state more than a week earlier. Not only does the virus makes people sick, in an estimated 1% of cases for the strain circulating in the United States, it can be fatal, according to the Centers for Disease Control and Prevention.

The man left the clinic with a prescription for antibiotics, though he was not diagnosed with anything, he said.

Two days later, with his fever spiking higher, he went to the emergency department at Atrium Health Kannapolis. There, he was tested for herpes, and those results came back negative too, he said.

He left with instructions to take Tylenol to treat the fever, he said.

Having read that monkeypox tests and vaccines were available, the man kept making calls.

Each morning at 9 a.m., he said he called the Durham Health Department, but they never arranged for a test. A spokesperson for the Durham County Health Department said they could not comment on an individual resident’s case.

He eventually spoke with a state epidemiologist, who let him know that a Wake County resident who tested positive for monkeypox had obtained a test through the University of North Carolina system, he said.

On July 8, he was finally tested after three hours in the UNC clinic’s waiting room while state health officials approved the test, he said.

The man told Kinsley during the phone call he recorded that the delays made him especially concerned for people less informed and less proactive than he is.

“I’m concerned that for friends of mine who might not have the level of information that I do, they might be up a creek without a paddle,” he said.

DOCTORS SHOULD KNOW BETTER

State Epidemiologist Dr. Zack Moore on Tuesday said all of the clinicians the man encountered could and should have sent a swab to the state for testing.

In early June, the N.C. Department of Health and Human Services sent a memo to all of the state’s clinicians that detailed the symptoms of monkeypox and instructions for collecting specimens. Any suspected cases of monkeypox should immediately be reported to the local health department, the memo instructed.

“Your presentation fits our guidance to a tee on who should be tested,” Kinsey told the man during a phone call.

Furthermore, Moore said the state lab had no shortage of tests available.

“There’s ample availability of testing… there have not been any issues with testing capacity,” he said.

Wohl said the lesions around the man’s mouth should have immediately raised suspicions about monkeypox, especially in light of the outbreak. The fact that so many providers did not test him points to systemic problems with the handling of infectious diseases, he said.

With limited resources, DHHS did what they could, Wohl said. They sent memos and posted guidance on their website. The problem is that DHHS doesn’t have a good way of making sure the information reaches healthcare providers.

“Do you think your doctor read that memo?” Wohl said. “They’re not all reading the memo and they don’t all care.”

Early diagnoses are crucial during infectious disease outbreaks like this one, Wohl said. Identifying close contacts and vaccinating them could mean the difference between keeping the virus contained and allowing it to spread into the community.

Though most people recover from monkeypox on their own, there are some patients with compromised immune systems who could benefit from treatments early in their illness or others who could benefit from a vaccine shortly after their exposure, he said.

Unfortunately, the Durham man’s experience likely indicates that there are others who have had similarly difficult times getting tested, Wohl said.

“Can we realistically think there are not other people who had a lesion and saw a provider who didn’t suspect monkeypox?” he said. “Of course there were.”

SYSTEM NOW MOBILIZING

The state’s largest health systems and county departments are now mobilizing to address the growing threat monkeypox poses. Ten cases of monkeypox have been detected in the state and 929 cases have been reported nationwide as of Wednesday.

UNC began transforming a same-day clinic in Chapel Hill into a monkeypox clinic on Tuesday to ramp up testing. A spokesperson for Duke Health said on Tuesday that all of its primary care clinics, urgent care clinics and our infectious disease clinics are able to collect specimens and send out tests.

“In recent days, we have taken steps to ensure that staff and providers are more fully aware of the symptoms of monkeypox,” the spokesperson said.

Still, the state and federal government may have missed its window for containing this virus yet again. Experts now believe that monkeypox is likely spreading through the community undetected.

“There’s still stuff we can do and we are doing but the idea that we can completely eradicate it is not where we are,” Moore said.

In the phone call with the Durham man, who was frustrated and frightened by his experience, Kinsley said he personally called the state’s major health systems to reinforce the need for liberal testing and consistent healthcare.

He said his department also plans to publicly emphasize the fact that all clinicians can send samples to be tested for monkeypox, to allow patients to advocate for themselves if their providers deny them a test, according to the recorded call.

“It should never have been as hard as it was for you to get access to testing,” Kinsley said to the man. “Unfortunately, it’s an example of how broken the healthcare system can be.”