An estimated 3.7 billion people live with HSV-1, but herpes is not a priority to many doctors

NEW YORK – 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.

Lauren, who asked that her last name be withheld to talk about personal health issues, at the time 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 had not 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.

That was in 2013. Over the past 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 would not accept her – has been the hardest part of managing the disease. “It attacks your self-worth,” she said.

Herpes is extremely common. The World Health Organisation estimates that 3.7 billion people live with HSV-1 – some oral and some genital. And cases like Lauren’s, in which 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 specialises in sexually transmitted infections.

But herpes is not a top priority for researchers, said Dr Larry Corey, a professor and virologist at the Fred Hutch Cancer Centre in Seattle who has studied the virus. “The disease has been sort of ignored by the pharmaceutical industry and the medical research establishment,” he said.

There are several potential reasons for this, experts theorise, 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 past few decades, said Dr Wald.

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 is why herpes remains in a person’s body for life. Vaccine attempts have not stimulated an immune response that can control the virus or prevent infection, she added.

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. Testing is typically reliable when a patient has symptoms. Doctors can swab a lesion and run a highly sensitive molecular test.

The United States Preventive Services Task Force does not recommend routine genital herpes screenings for people without symptoms, in part because false positive rates are so high.

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

As cases circulate, said Dr Zenilman, patients are left grappling with a diagnosis that can be psychologically devastating. “You can control the symptoms,” he added. “But many people feel stigmatised, dirty.”

How herpes got sidelined

In the vast majority of cases, people will have very mild symptoms and many will have none. That is part of the reason the infection is so pervasive: People pass it on to 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 characterised by one or more lesions around the genitals or the rectum. In the US, about one in six people between the ages of 14 and 49 has genital herpes, and more than 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 antiviral medication daily, others take it only 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.

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 more than 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 humans, making them more difficult to eradicate, said University of Washington School of Medicine’s Associate Professor Christine Johnston, who has studied herpes.

Stigma of herpes

Herpes stigma stems in part from the idea that people with the infection have done something wrong, said Dr Ina Park, a professor of family and community medicine at the University of California, San Francisco. But you can exercise every precaution and still get it, she added – condoms do not entirely prevent transmission and you do not need to have penetrative sex to contract the virus.

Prof Johnston said medical providers, in general, often do not receive extensive education on talking to patients about sexual health. When it comes to herpes in particular, “healthcare providers can be really insensitive about it and minimise it”, she added. “This is thought of more as a nuisance than a serious infection.” NYTIMES