Lack of knowledge, unreliable testing feed the stigma of herpes

Medically speaking, it’s just a rash: an extremely common rash infecting about 1 in 5 Americans. But most people with the underlying virus don’t know they have it.

A diagnosis of the genital form of herpes—herpes simplex virus 2, or HSV-2—can send patients into a tailspin and depression, and at first can threaten romantic relationships. 

HSV-2, part of the same viral family as chicken pox, shingles and cold sores in the mouth, carries a stigma that the medical community and people who have the diagnosis say has gone on for too long, and that the ramifications of having the virus have been blown far out of proportion.

“What is the actual negative impact of this infection?” said Dr. Christine Johnston, associate professor in the division of allergy and infectious diseases at the University of Washington School of Medicine. “The stigma is the most negative impact—it’s more negative than the actual clinical symptoms.”

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.”

One woman in her mid-30s, who spoke on condition of anonymity, said her diagnosis colors her daily life, and that she’s not had a single “happy day” since she learned she contracted the virus. “I’m one of the people who are suffering more than they should have to because the medical community doesn’t want to risk shaming and stigmatizing others, even when they’re carrying the virus,” she said. “Would there be the same shame and stigma if doctors weren’t encouraging millions of people to stay in the dark?”

She said the medical community needs to examine its role in “perpetuating the stigma by advising people not to get tested.” 

Dr. Edward Hook III, a professor of medicine and epidemiology at the University of Alabama at Birmingham School of Medicine, who has worked with the CDC on its sexually transmitted disease guidelines since 1982, said testing and the knowledge that comes with it are always better than being left in the dark when it comes to sexually transmitted diseases. 

But like the CDC, he said he does not advocate for any routine blood testing for HSV-2 because of the relatively high false-positive rate. It can be helpful, he said, particularly for someone whose partner is known to have a recent diagnosis.

However, he said, “General antibody testing for persons who are worried that they might have HSV is not something that I recommend.”

Hook is consulting on the CDC’s updated guidelines that are expected to be released next year.

“For all sexually transmitted infections, it’s far better to know one is affected than not to know,” Hook said. “The problem in herpes is that the stigma is so extremely large, and the understanding is so extraordinarily low.”

He noted that the CDC is limited in the role it can ultimately play in combating a stigma he has found to be “much more pervasive and intense” in the U.S. than in other countries, including Western Europe. “While they acknowledge the issues in and around stigma regarding all STIs, the CDC STD guidelines’ purpose is not to comprehensively deal with issues of STI stigma,” Hook said. 

Still, he argued, the particularly American stigma for STIs “has to do with lack of knowledge and understanding, in my opinion, and lack of the ability of public health entities like the CDC to comprehensively counsel and address these issues.”

Meanwhile, the stigma remains as bad as ever, Johnston said, and “the best way to fight stigma is to normalize it.”

“This is really an infection that is acquired through sexual activity—which is something we all do—and is an infection that typically does not cause severe symptoms in most people,” she said.

And to normalize it, everyone needs to step up, she added.

“It is everyone from healthcare providers to the media to individuals—that once you understand what the infection is, the stigma should fade away,” she said.