Tired of ‘dead end’ approach, herpes patients mobilize to demand government action

A medical student spoke emotionally about grappling with a diagnosis his classes told him little about. A young queer man took one test, got a different result on the next, and is now saving up the money needed for the most advanced diagnostics, which insurers rarely cover. A young woman tested positive, got little guidance from her doctor and found information on government sites that she interpreted as pushing abstinence.

“It’s the 21st century,” she said. “I think, as a society, we are kind of past that rhetoric.”

The testimony came from listening sessions the Department of Health and Human Services held for herpes patient advocates earlier this month. In response to demands from activists, HHS asked patients and providers to talk at two Zoom meetings about their experience with the disease and what they would like to see from the agency going forward.

Although the lifelong infection has often been portrayed in popular culture as more punchline than disease, and ridiculed in media as disparate as “Last Week Tonight with John Oliver” and “The Mindy Project” and “The Hangover,” advocates have in the last couple years pushed authorities to take it more seriously. It affects massive swaths of the population, they point out, and can have real consequences.

The stigma it carries, they point out, can exact a major psychological toll and significantly disrupt romantic life. Although many cases are asymptomatic, they can flare up into painful lesions on the mouth or genitals and cause flu-like symptoms. The herpes simplex virus — which comes in two forms — raises the risk of acquiring HIV. In rare cases, it can be passed by mothers to infants, where it can be fatal or cause neurological damage. Some early research suggests it might also increase the risk of developing Alzheimer’s late in life.

Although these groups have largely organized online in just the last couple of years, doctors who have been in the field for longer said they have already had an impact.

Christine Johnston, a physician and herpes specialist at the University of Washington who spoke at a session specifically for providers, said federal scientists now seem to be recognizing herpes as a major issue for the first time.

“I do think the advocacy community has played an enormous role in bringing this to the fore,” said Johnston, who is on the board of one patient group, Herpes Cure Advocacy. “From a researcher perspective, we’ve been saying these things…. for 10 or 20 years, and I think hearing it from advocates and the patients who are affected has just been a game changer.”

The two listening sessions came in response to a congressional directive last year, pushed by advocates, to add a herpes-specific addendum to the STI National Strategic Plan released in 2020.

Herpes care providers and advocates have a variety of concerns, including vaccines and drugs. Although there have been antivirals available for 40 years, they only temporarily suppress the virus. And there are no vaccines; the last major effort to develop one, from GSK, failed in 2010, and there have been few efforts since, though BioNTech and Moderna have recently shown interest in deploying mRNA to that effect.

More basically, though, advocates lament that it is difficult for them to even find out if they have the virus. The Centers for Disease Control and Prevention does not recommend that standard STI panels include herpes testing, because the tests are considered inaccurate: They underdiagnose the oral form of the virus, called HSV-1, and overdiagnose the genital form of the virus, called HSV-2. A 2016 report found that as many as half of all positive HSV-2 tests are false positives.

“I’m seeing an extremely high rate of false positives,” said Terri Warren, a nurse who runs a herpes clinic in Oregon, at one of the sessions. She added, “if we’re not starting with a good test, we can’t know who’s infected. We can’t know what interventions to apply.”

Warren asked regulators to authorize new tests only if they are as sensitive and specific as the western blot, currently the gold standard that patients can get to confirm their diagnosis. The test — the one the young queer advocate is saving for — can be prohibitively expensive for some. UW is the only place that offers it for the general public and charges $253, not including the cost of having blood drawn and shipping it.

The testing deficit can make it difficult to get a firm grasp on how many people are infected, with either HSV-1 or HSV-2. And both are concerns, especially as HSV-1, which is more prevalent, can spread to the genitals during oral sex.

At a listening session, the CDC cited a 2018 count of 18.6 million HSV-2 infections.

“That’s a very outdated number,” Johnston told officials.

Herpes is not one of the nationally notifiable diseases, the group of conditions that public health officials must report to the CDC. Kristen Kreisel, an acting branch chief for the agency, said that was for a variety of reasons, including the lack of accurate testing. It would also be difficult for public health departments to handle the volume of cases — they already struggle with volume from chlamydia, which affected 4 million people in 2018, she noted — and difficult to determine if a positive test was actually a new diagnosis or a flare-up from a patient who had been asymptomatic.

Patients who are able to get a diagnosis say they are often given minimal or factually inaccurate guidance from their providers. The woman who found resources online indicating abstinence as an optimal strategy was told by her doctor she should “probably” disclose her status to future sexual partners. Another patient was told by their doctor they could not transmit the virus while they were asymptomatic — a common claim that experts say is inaccurate. (Because of the stigma associated with herpes, STAT is not disclosing patients’ names except where the patients specifically granted permission.)

“Unfortunately, what the patient is often left with is, you know, just a seven-day antiviral treatment, and told, you know, best of luck,” said the med student. “Which is incredibly, you know, alarming for patients.”

Courtney Brame, a herpes education advocate who runs a popular Instagram page and podcast called “Something Positive for Positive People,” has conducted surveys of herpes patients and told officials that the guidance they receive upon diagnosis is essential.

“Oftentimes the way that they received their diagnosis from the healthcare provider influences not only how they go on to disclose to future partners, but if they even go on to disclose to future partners,” he said, calling for more resources in high school or college education.

In part because there is no way to cure herpes or entirely eliminate the risk of spread via sex, he also called for officials to switch messaging from herpes “prevention” to “minimization.” Those measures can include condom use, taking antivirals and avoiding sex when a person or their partner’s symptoms are flaring — all of which are partially effective — but also mean communication between partners about risk, specific forms of sex, and testing.

Prevention rhetoric, he said in a follow-up interview, implies that people who are positive should never have sex — pushing them out of the dating world — and contributes to the toll a diagnosis takes on patients’ mental health.

“There were people, initially, when I first started this podcast, who had attempted suicide, who had suicide ideation,” he told the HHS audience. “So I would really encourage you all to consider the mental health aspects, as well as the physical aspects.”

Providers, however, often have little information about herpes. A public health worker in Wyoming testified that while she had information to give doctors on chlamydia and gonorrhea, she has little to offer people who come in and ask for herpes tests.

“I have not been given any guidance,” she said. “I feel like I’m at a dead end. I give people a lot of printout information on it, and send them to their primary care providers where I know that they are also not well informed.”

Addressing that information will be part of HHS tasks going forward. Officials told patients and providers that HHS is poring over published literature and would bring a federal working group together to “establish action items for accountability” and areas for collaboration. A draft agenda with proposed specific actions are also coming.

The next public meeting is in May, in person in New Orleans. Because these were billed as listening sessions, government officials answered few questions and said little. Advocates are eager to hear more about their views, as well as learn concrete steps the agency might take.

“They haven’t committed to any timelines yet,” said Kimberly, head of Herpes Cure Advocacy, who requested STAT not use her last name. “We’re hoping for something this summer for sure.”