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

“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. [..]

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. [..]

Providers [..] 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.”

Full article, J Mast, STAT+, 2023.4.21