Billions have herpes, but treatments and tests are scant
‘... That a lot of the toll is psychological makes (doctors) not that interested in it’
When Lauren went to her doctors with stinging sores on her genitals, she assumed the pain was from a urinary tract infection. But at the OB-GYN, her doctor 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, who occasionally dealt with a 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Lauren became withdrawn and almost failed out of college.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 past decade, Lauren has had only a few additional outbreaks. 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 STIs. “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 other treatments over the decades, 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, research shows.
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. Recently, the task force reaffirmed its recommendation.
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, Zenilman said.
“You can control the symptoms,” he added. “But lots of people feel stigmatized, dirty.”
Herpes can be severe in certain cases: Babies can contract neonatal herpes from their mothers, putting them at risk for 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 mild symptoms, and many will have none. That’s part of the reason herpes is so pervasive: People pass it on 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 U.S, 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. But the risk of spreading herpes is never zero. The disease lingers in the body, putting the onus on patients to disclose their diagnosis.
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.
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.
But past attempts have failed. 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.
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 latestage clinical trials, said
Dr. Ina Park, a professor of family and community medicine at the University of California, San Francisco. “There’s nothing anywhere close to prime time,” she said.
Medical providers, in general, don’t receive much education on talking to patients about sexual health, Johnston said. When it comes to herpes, “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.”