Herpes Can Be Devastating but Treatment and Testing Remain Scant - The New York Times

Billions of people live with the infection, but there has been scant progress for treatments and tests.

When Lauren went to her doctors with stinging clusters of sores on her genitals, she assumed the pain was from a urinary tract infection. But at the OB-GYN, her doctor swabbed the bumps and told her that the rash was herpes. "No," she remembered responding. "It's not."

At the time, Lauren, who asked that her last name be withheld in order to talk about personal health issues, was a 19-year-old college student. She was in a two-year monogamous relationship with her second-ever sexual partner — a guy who occasionally dealt with an errant blister on his lip.

They hadn't known that oral herpes could induce cold sores, and that HSV-1, the virus that causes oral herpes, could be transferred to the genitals. Lauren's boyfriend was convinced that she had cheated on him, and he broke up with her, she said.

Lauren became withdrawn and almost failed out of college. "You think, Why does anything even matter anymore?" she said. "I'm never going to date. I'm never going to have a boyfriend."

That was in 2013. Over the last decade, Lauren has had only a few additional outbreaks, none as painful as her first. The mental strain — the depression she fell into after the diagnosis, the fear that future partners wouldn't accept her — has been, by far, the hardest part of managing the disease. "It attacks your self-worth," she said.

Herpes is extremely common: The World Health Organization estimates that 3.7 billion people live with HSV-1, some oral and some genital. And cases like Lauren's, where HSV-1 spreads to the genitals during oral sex, have sharply increased over the past two decades, said Dr. Jonathan Zenilman, a professor of medicine at Johns Hopkins University School of Medicine who specializes in sexually transmitted infections.

But herpes isn't a top priority for researchers, said Dr. Larry Corey, a professor and virologist at Fred Hutch Cancer Center in Seattle who has studied the virus. It isn't even the top priority among those who study sexually transmitted infections, he added. "The disease has been sort of ignored by both the pharmaceutical industry as well as the medical research establishment," he said.

There are several potential reasons for this, experts theorize, including the relatively mild physical symptoms for most patients, clinicians' reluctance to discuss sexual health and how hard it is to develop a vaccine for herpes.

"The fact that a lot of the toll is psychological makes physicians not that interested in it," said Dr. Anna Wald, a clinical virologist and a professor of medicine at the University of Washington School of Medicine.

There has been little progress on more accurate tests, vaccines or additional treatments over the last few decades, Dr. Wald said. Part of the challenge is that the herpes virus can hide inside neurons that are shielded from the immune system, making the body's immune response insufficient at eradicating the virus, she said — that's why herpes remains in a person's body for life. Vaccine attempts, so far, have not stimulated an immune response that can control the virus or prevent infection, she said.

If a patient does not have symptoms, doctors typically diagnose herpes with an antibody test that is frequently inaccurate. Up to half of positive commercial test results could be false, according to past research. There is another antibody test, called the herpes Western blot, that scientists consider the gold standard in diagnosing herpes — but the test is only available through the University of Washington, which can be cumbersome and expensive for patients to obtain. Testing is typically reliable when a patient has symptoms; doctors can swab a lesion and run a highly sensitive molecular test.

The U.S. Preventive Services Task Force doesn't recommend routine genital herpes screenings for people without symptoms, in part because false positive rates are so high. On Tuesday, the task force reaffirmed its recommendation. In a related paper, a group of doctors wrote that the recommendation was, in part, based on "psychosocial harms" associated with false positives on herpes tests.

And so the virus continues to spread essentially unchecked — exacerbated by just how ineffective the most widely available tests for herpes are, said Terri Warren, a nurse practitioner who has researched herpes.

As cases circulate, patients are left grappling with a diagnosis that can be psychologically devastating, Dr. Zenilman said.

"You can control the symptoms," he added. "But lots of people feel stigmatized, dirty."

How herpes got sidelined

Herpes can be severe in certain cases: Babies can contract neonatal herpes from their mothers, putting them at risk for severe complications and even death. For people who are immunocompromised, outbreaks can be more prolonged and painful. In the vast majority of cases, though, people will have very mild symptoms, and many will have none. That's part of the reason the infection is so pervasive: People pass it onto partners without knowing they have herpes.

Those who contract HSV-1 may develop blisters on or around their mouths or, in some cases, on their genitals. HSV-2, the other predominant strain, is usually characterized by one or more lesions around the genitals or the rectum. In the United States, around one in six people between the ages of 14 and 49 has genital herpes, and over half of adults have oral herpes.

Antiviral medications help reduce the amount of the virus a person sheds, lowering the chance that someone with herpes will pass it on to a sexual partner. Some patients take antivirals daily; others only take medication when they have an outbreak. But the risk of spreading herpes is never zero. The disease lingers in the body, putting the onus on patients to disclose their diagnosis to anyone with whom they have intimate contact.

When Lauren started dating after her diagnosis, she found herself staying in relationships for longer than she might otherwise, scared nobody else would want to be with her. "I thought I was going to die alone," she said.

Brittany, 29, who asked that her last name be withheld in order to discuss her personal health, only thinks about her HSV-2 when she scrolls through a dating app. In the two years since she was diagnosed, she's only had one outbreak. Still, when she looks at each profile, she wonders how the man would respond to learning about her diagnosis. "I just worry so much that people are going to judge me," she said. "That no matter how I present it to them, I'll still face rejection. That weighs heavily on me."

Some men have told her, flat-out, that they would never date someone with herpes, but what bothers her, too, are the ones who say, "I'm so sorry this happened to you."

"I don't want people to feel sorry for me," she said. "I wake up every day and I'm fine."

Scientists have worked on herpes vaccines in fits and starts since the 1970s, said Dr. Harvey Friedman, a professor of medicine at the University of Pennsylvania Perelman School of Medicine who has studied the disease for over 40 years. But past attempts have failed, for reasons researchers are still trying to uncover.

Because herpes has been around for so long, the viruses have evolved alongside us, making them more difficult to eradicate, said Christine Johnston, an associate professor at the University of Washington School of Medicine who has studied herpes.

There are new vaccines under development. Dr. Friedman is working with BioNTech on an HSV-2 vaccine candidate that was given to the first human subject in December. But none are in late-stage clinical trials, said Dr. Ina Park, a professor of family and community medicine at the University of California, San Francisco, and author of "Strange Bedfellows: Adventures in the Science, History, and Surprising Secrets of S.T.D.s." "There's nothing anywhere close to prime time," she said.

'One of the biggest secret societies'

When Ella Dawson, 30, contracted genital HSV-1 in college, she started to post openly about her diagnosis on social media. To her surprise, people came out of the woodwork to share their stories — friends, relatives, even a cashier who worked at the grocery store on campus. Many told her that they had never disclosed their diagnosis to anyone other than a sexual partner.

"It's one of the biggest secret societies in the world," said Ms. Dawson, a novelist and writer who often speaks publicly about her experience with herpes.

Courtney Brame, 34, started the herpes education advocacy organization and podcast Something Positive for Positive People after his own HSV-2 diagnosis. He's seen how the disease "completely shatters a person's identity," he said, partly because of how central sexuality can be to someone's self-worth. "They don't feel like they have anything to contribute to a relationship now, just because they have herpes," he said. "It's like, 'Who's going to want me now that I have this?'"

Mr. Brame has seen this in his own life. He was once messaging a woman on Tinder who brought up her struggle with chronic asthma; when he disclosed his own chronic condition, she stopped responding. But more often than facing rejection, when he shares his diagnosis, he said, he gets a different response: Women share that they, too, have herpes.

Herpes stigma stems in part from the idea that people with the infection have done something "wrong," Dr. Park said. But you can exercise every precaution and still get it, she added — condoms do not entirely prevent transmission, and you don't even need to have penetrative sex to contract the virus.

Though condoms can reduce the risk of transmission, not everyone with herpes will use a barrier method in long-term, monogamous relationships. In 2021, Something Positive for Positive People conducted a survey of over 1,000 people diagnosed with herpes; around 66 percent said a partner had consented to sex without a condom or other barrier method. And there is little research on how the virus spreads between women who have sex with women, Dr. Park said.

Medical providers, in general, often don't receive extensive education on talking to patients about sexual health, Dr. Johnston said. When it comes to herpes in particular, "health care providers can be really insensitive about it and minimize it," she said. "This is thought of more as a nuisance than a serious infection."

"Clinicians don't want to deal with this," Ms. Warren said. "It involves people talking about sex. They're crying, they're going to have to talk about various specifics like is oral sex OK, is anal sex OK — I don't think they want to go there," she said.

Without support from doctors, or medical innovations to cure the infection, people with herpes are left "dealing with two viruses at the same time," as Ms. Dawson put it. "You're dealing with the physical symptoms of the virus," she said, "and you're dealing with the mental strain."

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