- Experts in San Francisco, Miami and the UK say many cases of monkeypox are “missed”.
- Some patients receive false negative tests for monkeypox, while others are misdiagnosed.
- Fear, stigma, miscommunication and misunderstanding all contribute.
Since this outbreak began in mid-May, more than 7,100 patients have been diagnosed with monkeypox in the US.
But dr. Graham Walker, an emergency physician in San Francisco, says many more monkeypox patients are not receiving the care and attention they deserve to efficiently prevent, diagnose and treat this infectious disease.
Walker says he saw “several patients” whose monkey pox diagnosis was “missed” by another health care provider before landing in excruciating pain at his emergency room.
“I had a patient who, I saw their file from another facility, and it said, ‘lesions just in the genitals, so it’s unlikely to be monkey pox,'” he told Insider.
Other clinicians and scientists in the US, UK and West Africa are saying the same thing: monkeypox is widely underdiagnosed.
Some misdiagnosed patients get so much pain that they can no longer wear clothes
dr. Lilian Abbo, an infectious disease specialist at the University of Miami, says she’s noticed the same problem across the country from Walker’s ER.
“We’ve seen patients who have gone to seven centers: three different emergency care, dermatologists, and emergency departments to try and figure out what’s going on,” she said during a recent Infectious Diseases Society of America telebriefing, emphasizing the need for better awareness of how monkey pox can occur.
Increased awareness can have huge implications for both treatment and disease management. It is possible that if close contacts detect early enough in the course of their infection (ie in the first 4 days after an exposure), the Jynneos smallpox vaccine could be used to prevent monkeypox infection altogether.
But “by the time they arrive,” many misdiagnosed patients “may be cured, or some of them may have progression of the disease,” Abbo said. That progression can be painful.
Patients in this outbreak, in some of the most severe forms, were unable to go to the toilet because the pain around their anus and genitals becomes so severe. “One of my patients said, ‘I can’t even wear pants or underwear without pain,'” Walker said.
‘Textbook’ descriptions of symptoms are not always accurate
Part of the reason monkeypox is underdiagnosed is that this disease outbreak doesn’t work like the “handbook” monkeypox presentations of the past, with classic fevers, swollen lymph nodes in the neck, and headaches all appearing before the smallpox on the face. and on the hands.
Instead, monkeypox lesions may be retained in the rectum, lymph node swelling may only be present in the groin, and it is not uncommon for a single smallpox to be the only marker of a person’s full-blown infection.
A July 21 New England Journal of Medicine compilation of 528 case reports from 16 countries around the world captures some clear patterns for this outbreak. Nearly two-thirds of the patients studied had lesions in their anogenital (private) area, with a majority of patients having fewer than 10 lesions on their entire body.
Patients showed “symptoms that were not part of the case definitions,” Chloe Orkin, author of the NEJM study, told Insider. “The most important thing is to help doctors recognize it.”
Fever, fatigue, muscle aches and headaches were some of the most common pre-rash signs that a monkeypox infection was nascent, making it easy for people to initially mistake the condition for COVID as well.
“Every patient I spoke to had a COVID test when they had a fever, and they said, ‘oh, it’s not COVID,'” Walker said.
Other times, diagnoses are missed because health care providers aren’t getting “a good, aggressive scrub” of the lesions, he said.
“I’ve seen that before, where people have had a test that was negative and I was like, ‘You literally have every symptom of monkeypox, this looks exactly like all the other cases of monkeypox that I see, and we’ve ruled out other things. like herpes, syphilis, whatever.'”
Some people avoid being diagnosed with monkey pox because it can be stigmatizing, painful and lonely
Early treatment is key to controlling monkeypox infection and preventing the excruciating pain it causes. The antiviral drug Tecovirimat (TPOXX) can help, as can prescription pain relievers that are stronger than Motrin and Advil.
But many patients, fearing stigma and lack of information, do not seek help.
One of Walker’s patients had had his lesions under control on his own for two full weeks when he finally decided to seek treatment.
“He just wanted to settle it at home. He was concerned about the stigma, he said he’d never had an STD. But the pain was so bad he finally came in,” Walker explained. “There’s a lot of fear, there’s a lot of fear, and to be honest, there’s probably a lot of people who haven’t been diagnosed yet,” he added.
dr. Jason Zucker, an infectious disease specialist at New York Presbyterian Hospital, said that “even patients with mild disease have had a very hard time” when they are diagnosed with monkey pox.
“In addition to this stigma, diagnosed patients isolate themselves at home for up to four weeks,” he told reporters on Friday during a Zoom call. “It’s important to make sure we’re all aware of this, that we’re all working together to reduce stigma, and that we’re providing patients with mental health and other supportive resources after their diagnosis.”
A Nigerian doctor saw this type of monkey pox in 2017. He hopes that people will finally start funding research into this virus.
In Nigeria, where Dr. Dimie Ogoina has been studying monkeypox outbreaks linked to sexual contact since 2017, saying he struggles with similar issues of confusion and stigma, both of which make it harder to get a sense of the true extent of an outbreak.
Often, he suspects, patients with “genital lesions” don’t come to the hospital to get the correct diagnosis, but simply go to the pharmacy for an STD treatment.
“There are a lot of things that are not yet known about monkey pox,” because “it’s a neglected disease,” Ogoina told Insider. “As the north of the world has now fallen, I’m sure there will be investment in research and we will be able to discover most of these unknowns.”