The stigma can cause friction between doctors and their patients at time of diagnosis: Patients reel when they find out they have HSV-2, and physicians don’t always respond as the patients need.
People with the HSV-2 diagnosis are very clear about where they think the stigma starts: the recommendations of the Centers for Disease Control and Prevention, which are the basis for screening, treatment and physicians’ clinical responses. They say these guidelines fundamentally skew perceptions against them. The reason for this is the agency’s unique treatment of HSV-2 when it comes to testing.
HSV-2 isn’t included in the standard panel of tests for sexually transmitted infections. The widely available tests for herpes are famously inaccurate and can give false positives up to 50%. In some cases they can fail to detect the virus at all.
Current treatment cost data is difficult to track down, though at least one study of emergency department treatment indicated that patients overuse EDs for non-emergent care. ED spending on routine HSV infections more than doubled to $91 million in 2016 from $45 million in 2013.
But while the medical community and the CDC urge screening for chlamydia, gonorrhea and syphilis, when it comes to genital herpes they say people probably shouldn’t get tested unless they show symptoms.
The less-frequent testing and, as a result, the under-diagnosis of the disease mean that people fail to recognize how common it is, creating the situation where those who are accurately diagnosed are likely to feel shame or embarrassment, while a large chunk of undiagnosed infected people are unaware.
More than 20% of people in the U.S. age 14 to 49 have the virus, according to the CDC, while out of everyone who carries genital herpes it’s estimated that between 10% to 25% are aware that they have it. The vast majority of cases either don’t break out in blisters or have such a mild initial reaction that they overlook the symptoms and never get tested.
And that feeds into what the CDC recommends.
“I think (the CDC) needs to figure out what their message is,” said Alexandra Harbushka, who runs the online community Life With Herpes and offers counseling to people after their diagnosis. “Either herpes is not a big deal, and you don’t test anyone, and chalk it up to something like getting the flu, or the chicken pox, where everybody gets it, and break that stigma; or, they should say, ‘We want to prevent you from getting this,’ and figure out their messaging.”
Dr. Stacey Rizza, an infectious-disease specialist at the Mayo Clinic, tries to manage the stigma part of the diagnosis by referring people to counseling. She said she finds counseling particularly important for couples, once one person in the relationship finds out he or she has the virus. “That’s what makes me nervous,” Rizza said. “You see someone—the angry spouse comes along and is glaring, and it’s uncomfortable, and they need support and help.”
Although she’s been treating the virus for 20 years, Rizza keeps seeing the same themes at the time of diagnosis. When she talks to couples, she said she emphasizes that HSV-2 can stay dormant for years only to emerge in symptoms unexpectedly, and that a flare-up doesn’t necessarily mean it’s a new infection.
“The diagnosis doesn’t mean you run out and leave your wife,” Rizza said. “It could be something that’s been there for a very long time.”