Sharing our stories

We asked our community two questions. How has HSV affected your life? And what would better treatment or a cure mean for you?

How has HSV affected your life?
I was diagnosed with HSV-2 at 21. The doctor was very abrupt and offered no support, medically or emotionally. It was, quite literally, soul crushing. I’d been with my boyfriend 3 or 4 months at the time and made him get tested. Negative. Looking back, it’s clear that he is an asymptomatic carrier who got a false negative because he wasn’t actively shedding anymore when he was tested. In the years since I’ve also been exposed to HSV-1. As I’ve aged I’ve found my symptoms have worsened and I’ve been on antivirals to mediocre success for nearly a decade.

That’s what helps me hang on and gives me hope.

I’ve had two kids during this time and motherhood increases the transmission anxiety to the point of obsessive behaviors and occasional suicidal thoughts. I am never not worried about my children. We discourage sharing drinks, food, utensils, and cups, we encourage thorough hand washing, and I never kiss them. I can’t kiss booboos like other moms. The skin on my hands is reptilian from my constant hand washing. The stigma around the virus means I have no one to talk to about it, save my partner. My physical symptoms are, luckily, more annoying than anything else, but the mental and emotional toll is excruciating. Having contracted it from someone who is asymptomatic, the fear that I’ll transmit it during asymptomatic shedding is constant. This is why I don’t ever kiss my children. If it weren’t for Herpes Cure Research group I’ve found and their proactive work towards awareness and supporting cure research I would be a hopeless, anxious mess.

What would better treatment or a cure mean for you?

If there was something that could stop the shedding and reduce or remove my chances of transmission it would be a life saver. My biggest fear is giving this to someone who might have more extreme physical symptoms than I do. If I have to deal with my own physical symptoms and risks forever, so be it, but knowing that I could no longer transmit anymore would mean I could kiss my kids. I would do anything for that, risk anything. The timeline for treatments is long and chances are that when/if anything is available my kids will be teens or maybe even adults. I’m in my early 30s and my hope is for something that will let me kiss my grandkids. That’s what helps me hang on and gives me hope.

E.R., New England, USA

Our Herpes Cure Advocacy Goals

We’re advocating for better treatment urgently, because patients (moms, sisters, friends, coworkers) are waiting.

  • A functional cure for Herpes Simplex Virus (HSV-1 and HSV-2) that eliminates the latent virus
  • A preventative vaccine
  • At minimum, increased effectiveness in antiviral treatments that eliminate viral shedding and physical symptoms
  • Better representation of patients in guidelines and policy
  • Improved surveillance and rollout of comprehensive STI testing guidelines include Herpes Simplex Virus (HSV-1 and HSV-2) from the CDC

Latest Herpes Cure Research Projects

Updated as of 4/18/21.

These are herpes cure research projects, of which we are aware, that are either in clinical trials currently or have expressed intent.

For the latest timelines, news, videos, and dialogue on Herpes (HSV) cure research projects please join the Herpes Cure Research Reddit group.

1. The Jerome Lab at Fred Hutch Cancer Research Center

2. Excision Biotherapeutics

3. Shanghai BDgene, co.

4. Sanofi

5. GlaxoSmithKline

6. RedBioTec AG

7. X-Vax Technology

8. University of Pennsylvania – Dr. Harvey Friedman

9. Rational Vaccines

10. Genocea

  • 11. Excell Biotech
  • 12. Squarex

    13. United Biopharma

    14. Heidelberg Immunotherapeutics

    15. Blue Willow

    Is your team researching Herpes Simplex Virus cure or treatment? Want to be added to this list?

    We’d be happy to add you. Contact us at:

    STI Testing Guidelines for Herpes Simplex Virus (HSV) indicate bias

    Why don’t we test for herpes in a standard STI panel? We explore this rationale below.

    How do you protect a population from an infectious disease? You test for it and you track it.

    Current CDC recommendations for Herpes Simplex Virus (HSV-1 and HSV-2) surveillance and testing fail to protect the public from transmission. With 85% of HSV+ people unaware of their status and the majority of transmission from asymptomatic carriers, CDC failure to test creates a loop hole for transmission. What else, aside from preventative and diagnostic testing, is more important?

    Additionally, when patients are not explicitly told they aren’t being tested for Herpes providers do not have informed consent. This means even when a sexually active individual is proactive about their sexual health and has standard STI testing, they will not be tested for Herpes Simplex Virus and they are not told Herpes is not included. Meaning they can be HSV+, could be transmitting to multiple partners, and not know it.

    Is ignorance bliss?

    In the US, the CDC guidelines are based on guidance from the United States Preventative Services Task Force (USPSTF). Read the rationale here.

    Here are the key issues they have given for not including HSV-1 or HSV-2 in standard STI testing:

    1. COST: The rebuttal to this is all medical care is voluntary. We don’t not provide an MRI because of cost!
    2. INACCURATE SEROLOGY TESTS: The rebuttal to this is to implement a two-step testing with Western Blot.
    3. PSYCHOLOGICAL BURDEN OF FALSE POSITIVE: We believe that benefit of many outweighs the burden of the few. If 85% of carriers are unaware of their status this creates a loophole for asymptomatic spread. Reduction of transmission, and protection of sexual health, is more important to promote than it is to preserve a carriers ignorance.
    4. POST-DIAGNOSIS BEHAVIOR WONT CHANGE: This a clear double standard with CDC guidelines for STI testing. By promoting ignorance of HSV+ status, you create a loophole for asymptomatic spread from the 85% who are unaware of their status – a dynamic that comprehensive testing could help curtail.

    Herpes Activism Opportunity

    Email the USPTSF! Tell them their rationale for not testing is paternalistic and based on bias. People have a right to know what they have and be protected from others who do not know what they have. A sample email is here.

    USPSTF Board Chair: Dr. Karina Davidson


    CDC STD Department Director Dr. Jon Mermin