BALA CYNWYD, PA — Patient advocates are urging public health leaders to respond to herpes simplex virus (HSV), a common neuropathic infectious disease impacting ½ of Americans. HSV is highly common – yet experts say there is a critical unmet need for better treatment and that herpes needs to be taken more seriously by public health officials. Herpes, unbeknownst to many patients and health care providers, impacts brain health. Recent scientific evidence shows that HSV can cause neurodegenerative disease and is strongly suspected as a contributing factor in Alzheimer’s Disease. Advocates say most people are unaware and that there are critical gaps in medical knowledge and misconceptions as to the long-term health impacts. Now the National Institute for Health is responding with a multi-council working group to address herpes. with a coordinated effort across disciplines for the first time.
HIV/AIDS advocacy groups have recently joined forces with Herpes Cure Advocacy (HCA) leaders to address herpes and are jointly asking the HIV Vaccine Trials Network (HVTN) to consider herpes as a related infection. Given the syndemic nature of HSV and HIV, the development of a vaccine for HSV can prevent transmission and reduce the global burden of both HSV and HIV/AIDS. Herpes is a widely recognized driver of HIV/AIDS with nearly 30% of new HIV cases directly attributable to genital herpes infection.
Progress is being made however, and the field has seen momentum in recent years due to the work of HCA. In response to advocates’ calls for action, there is an HHS strategic plan and national strategy in development. CDC/NIH held a joint workshop in early November 2022 – the first federal meeting for HSV in decades. Most recently, the National Institutes of Health have assembled a multi-council working group, and issued a request for input (RFI) from scientists and the public into what will be the agency’s first strategic research plan for herpes with a strategic coordinated effort. Herpes is managed within NIH/NIAID STI research program, although the infection spreads primarily, asymptomatically, in the home.
The new NIH working group, led by NIAID, will give scientists in neurology, infectious disease, sexual health, virology, Alzheimer’s, Dementia, etc. the opportunity to give input into critical research areas across these disciplines for the first time. The working group RFI has a deadline for responses due June 21. Still advocates say more urgency and awareness is needed. Herpes Cure Advocacy Board President Jeffrey Klausner says, “We are very optimistic about this progress. But we also need to do much more, and we need accountability from our public health leaders, so that we can finally address herpes.”
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