Immediate Investment in Finding a Cure for Herpes Simplex Virus (HSV1 & HSV2)

Health
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This proposal is on behalf of millions of people suffering from Herpes Simplex Virus types 1 and 2 (HSV1 & HSV2) in the United States, including myself. This is a virus that affects more people than many realize, but the stigma surrounding it keeps so many of us silent. It’s time we speak up and demand action.

I didn’t know I had this virus until after I got vaccinated for COVID. Following the vaccine, my body started having persistent outbreaks that haven’t stopped since. The sores, itching, and discomfort have made it hard to enjoy my life, leaving me feeling trapped. I’ve lost relationships, and I often avoid going out in public and even to work because of the visible sores on my lips and around my body. I am a nurse and this virus does not let me give my best while at work because of the constant itching and cold sores in different areas of my body. It’s not just the physical pain—it’s the mental and emotional toll that comes with living with a virus that seems to be overlooked.

I’m here to advocate for everyone who, like me, feels left behind. We need urgent research and funding to find a cure for HSV1 and HSV2. The research is very promising but we need to put more funding and focus on finding a cure. This is not an easy virus to live with, and it affects every aspect of my life, as it does for so many others. I’m asking you, Bobby Kennedy Jr., to make this a priority when Trump becomes president. Do not forget us—we need your support to finally see progress on this issue.

I also ask everyone who reads this to support, vote for, and “heart” this policy so that it rises to the top where Bobby and others can see it. Together, we can push for the research needed to find a cure for this virus and give people like me a chance to get our lives back.

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I totally agree with you.

Even I am experiencing similar symptoms. You are not alone.

I know the stigma around HSV 1 and 2 causes people to avoid work, meeting friends or enjoying romantic relationships effectively.

More and more people should come together and advocate for the cure.

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Your words resonate deeply, and you are absolutely right—HSV is far more than just a physical condition. It profoundly affects mental health, impacting self-esteem, relationships, and overall well-being. Living with HSV comes with layers of stigma and isolation that only worsen the pain and sense of exclusion that so many already feel. The social and emotional toll of HSV can be as debilitating as the physical symptoms themselves, leaving people feeling disconnected and afraid to speak out.

The fact that this condition is often minimized only adds to the suffering. People don’t always understand the daily reality of living with persistent symptoms—flare-ups that are painful, intrusive, and prevent those affected from fully engaging in life. Not only does this disrupt the routines and joys that others take for granted, but it also contributes to ongoing mental distress.

You’re right to call for attention and support, and the need for accelerated research is urgent. HSV sufferers deserve to feel heard, to see their condition prioritized, and to have access to compassionate, effective treatments. The stigma should not keep this issue in the shadows any longer. Mental health is health, and until we address HSV with the seriousness it deserves, millions will continue to suffer in silence. Thank you for being a voice for so many who feel unheard. Let’s make sure HSV is no longer overlooked.

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Thank you for sharing this powerful message. At Herpes Heroes, we’re actively working to raise awareness and advocate for HSV research and treatment improvements. We’ve developed tools like a Comment Letter Guide (Click here for comment letter templates for the current HHS proposed addendum to include HSV. More about this HHS proposal click here. We believe this work will help the community voice these needs in policymaking spaces, aiming to push HSV research forward. Your experiences highlight the importance of investing in HSV research, mental health support, and de-stigmatization. Together, we can amplify these voices and call for the support HSV deserves. Learn more at herpesheroes.org.

Some initiatives the incoming administration can consider are :

  1. Increased Research Funding: Allocate federal funds to HSV research, prioritizing innovative diagnostics, treatments, and cure-focused research for HSV-1 and HSV-2.
  2. Public-Private Partnerships: Facilitate partnerships between federal agencies, universities, and private biotech companies to accelerate research and drug development.
  3. Expanded Clinical Trials: Simplify pathways for clinical trials on HSV treatments and vaccines, particularly for new and promising therapies like Pritelivir.
  4. Policy Changes for Drug Approval: Expedite the FDA approval process for HSV treatments showing safety and efficacy in early trials.
  5. Enhanced Surveillance and Reporting: Improve national HSV surveillance and reporting to better understand infection trends and prioritize resources for high-risk populations.
  6. Global Collaboration: Partner with international health organizations to leverage global research efforts and share HSV-related data, best practices, and innovative treatment models.
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Children’s and adults are suffering. I recently got diagnosed of hsv 1 without my knowledge and now like others I’m suffering. I’m not sure if I can marry and have a normal life. I’m not sure I can kiss my own child. Things like this may seem normal but we need a frictional cure or a complete cure so we can have a normal life. We need something and we need it fast. Please do help and hear our voices.

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I agree with you I’ve had this 20 years and I’ve been living in darkness since the day I’ve found out. My life was never the same. I’ve been depressed about it for two decades afraid to date and have a loving relationship. It just seems impossible because of rejection we need a cure.

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Since I contracted herpes from my ex fiancé about 4 years ago, my life has been shattered. I’m in physical and mental pain every day. I’m not able to find a life partner because of rejection.

HSV is a nerve tissue infection, not just a skin sore. It manifests in many different ways that the medical science has not described.

I suffer from sensation of bugs moving under my skin ( Formication) , stabbing nerve pain,and of course regular painful genital outbreaks
The current standard Antiviral treatment is not effective to many sufferers .
Depression and Suicidal ideation have taken over my life.
We need urgent attention to Herpes.

Funding Researches for HSV cure is imperative

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It’s been two years since I found out that I have herpes, and I’ve never been the same since. I try to enjoy life but the true joy that I once had is so hard to find. It lingers in the back of my mind each and every day - it torments me . I no longer feel desirable. I get compliments, but it’s difficult to appreciate because of my little secret. I always wish that I could have another chance at life without this being a part of my story.

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I have had constant nerve pain all over my body since contracting HSV-2. It’s severely limiting my ability to work, function normally and have healthy relationships. Not to mentioned the constant suffering. Better treatments for HSV could give many people their lives back.

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Been having nothing but suicidal thoughts just tired want to be normal again just tired of dealing with this waking up every morning drowning in that thought hopefully I survive to see something soon

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It really impacts my life, not only due to the condition, but mainly the stigma. I have neuralgia post herpes, and am in pain for the majority of the time.

PLEASE, WE NEED A CURE NOW!!!

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I agree with all that’s been said. I feel confident that there could have been a cure many times over by now but it is far too profitable for investors to stay the course. This is a global health issue that affects reproduction, families, mental health, suicide rates, and so much more. It is not “just a rash”.

This is absolutely and comprehensively destructive. It may not be apparent because doctors and pharmaceutical companies have been lying and minimizing it, plus there is so much stigma that people that are GRAVELY ill EVERY DAY do not feel they can be safely vocal about what they’re experiencing, but I genuinely believe that it is pernicious and largely, but quietly responsible for the crumbling of lives and relationships and thereby the fabric of all of society.

Please if anyone sees this post, whether you (think you) have it or not, please do up vote. Because even if you don’t have it - - or, again, think you don’t… Since many people that carry are simply obliviously housing sleeper cells, so to speak and possibly even asymptomatically spreading it- - it is almost guaranteed to affect/be affecting you or someone you care about now or in the future. This is a big deal and we need more advocacy.

Please do research to try to understand the true gravity of this disease.

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I can attest and 1000% agree. Unfortunately, this was passed on to me by a partner who didn’t even know.

According to WHO and from a friend who is really good with numbers and stats:

" According to WHO (2020) GHsv2 = 13.3% and 15.6% (higher end) GHsv1 = 10.2% and 13.1% (higher end)

Gential herpes type (1&2) = 23.5% and 28.7%(higher end) = 1 in 4 people

This estimation is among the whole population. So those who are sexually active and those who are not (disabilities, mental health, religion, social norms etc etc)

So if we excluded those people who are not sexually active the prevalence is higher correct

–

So i decided to google a couple stuff and what i found out is less people are using condoms :eyes:

So i did some more digging an i found this article (mind you there are more)

Link: Herpes Treatment Market size is set to grow by USD 1.14 billion from 2024-2028, Increasing prevalence of herpes infection to boost the market growth, Technavio

According to these articles analysts are estimating the herpes market to grow about 4.5% (CAGR) from 2024 to 2030 mainly to do with prevalence (so not all)

For those who DONT KNOW

It means compound annual growth

And NO im not going to waste my time explaining this…

But for something like HSV this is extreme crazy so it makes me wonder

  1. Pharmaceutical companies HAS to come uo with something now because there is huge money to be made
  2. Sooner or later herpes is going to be more common and that its crazy if its already 1 in 4"

It’s been far too long this virus has been lingering for decades. People who are impacted are still nervous, ashamed and depressed because of this latent virus that impacts their mental and physical health on the daily (many do not even know they have it because 1.) they are asymptomatic and 2.) the standard STD panel testing does not even include STI testing. This needs to be requested separately).

Please, let’s move the needle and find a cure for HSV 1 and 2. Dr. Jerome at Fred Hutch and Assembly Biosciences are just a couple of organizations that would benefit TREMENDOUSLY with your support.

Thank you

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This should also include “shingles” which is caused by the varicella-zoster virus (VZV).

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HSV is perhaps the most misunderstood virus within the medical community where even the doctors are misinformed about it’s symptoms. Many doctors are not even aware of the nerve issues that the virus is causing which is actually by far the most frequent symptom of the virus.

It is hard to know an exact number of how many people are infected with HSV1 and HSV2 because the tests aren’t great and studies differ a lot on who they determine as positive and not and where they test. Numbers do however tend to be around 10-30% for HSV2 and 50-80% for HSV1.
While this is true only around 0.5% of the population actually have a medical diagnosis for HSV2 and people are constantly misdiagnosed.

When someone is diagnosed with HSV2, at least 30% will enter a bad depression which they often never come out of, largely due to the lack of good treatment.
Valtrex fails to stop the outbreaks and only reduces the risk for spreading it by 50% per year in couples. It is based on acyclovir which has been around for 50 years and no other treatment has come out.

When diagnosed with HSV2 genitally people have 3-4 impossible choices to how to proceed with their life:

  1. Continue to live as normal and use condoms and the not so great AVs to reduce the spread and tell only long term partners about their condiction when they are about to enter a serious relationship.
  2. Be honest and tell every potential sexual partner right away and face rejections, rumor spreading (pretty bad in a world where everyone is connected through social media) and hope to finally settle for whatever partner that accepts them and be fine with the risk of one day spreading it to them.
  3. Skip dating entirely, isolate themselves and live a lonely life to avoid spreading it and take anti depressive therapy and hope to survive.

Additionally the testing other than blood anti body testing is mainly PCR cotton swabbing. This is mostly effective for uncommon large symptoms such as huge blisters filled with virus liquid. For smaller symptoms on thick skin areas it has a low detection rate.
This leads to a heavy misunderstanding within the medical community of how common non genital or mouth areas for the virus are such as herpes whitlow which is highly under reported as 2 in 100.000 people.

The main issue with the PCR testing is that it’s far too expensive costing up to 100 dollars per test and several tests are needed to find out how often you are shedding the virus, which visual symptoms to watch out for and which places of your body that are infected.
In Asia newer technology has been developed with tests that can cost as little as 1 dollar per test, something similar is needed for all patients globally.

The FDA has been far too hard on side effects in HSV treatments and pritelivir has been put on hold for far too long due to adverse effects on monkeys given extreme overdoses of the antiviral.

However the short term solution to stopping the spread of this virus and giving peoples life back is the second generation of these HPI AVs that have a much longer half life of up to a whole month and up to 4 times more effective than pritelivir with fewer side effects.
These are called IM-250 and ABI (Assembly Bio).
For people suffering from this virus, we can’t wait 10 years for this anti viral, we need it not today but yesterday because we are not getting any younger and we are only given one life.

Therefore I call for investment help to these projects and the quickest fast tracking program possible so that this can go from completed phase 1 testing to completed phase 3 testing in 2-3 years. And possibly for early access programs to the antiviral after successful phase 2.

Vaccines are sadly not doing well for treating nor preventing this virus.

In the long term we also want the gene editing programs to be sped up to fully cure this virus but the problem with gene editing is that it will take too long time until it becomes released and we need something now.

As a final thing I would like to add that herpes testing is not recommend when asking for a full STI test panel and spreading it while using condoms and AVs to avoid the spread but failing to tell a partner prior to sex can have severe legal suing consequences while not testing for it and spreading it without even using condoms has 0 consequences. Needless to say, this doesn’t exactly motivate people to get tested.

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I had a similar experience. I’ve had herpes under control for years by taking preventive valtrex daily. After my covid vaccine I started having continuous recurrences despite preventive valtrex. There are reports in the medical literature of herpes virus reactivations following the vaccine.

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Not a day goes by where I don’t think about suicide since being diagnosed with HSV. It makes you wonder how many people commit suicide due herpes. You will never know if someone took their life due to herpes because they will keep their diagnosis to themselves and just say they are depressed. People don’t feel like they can talk to anyone about HSV due to the shame and stigma surrounding it.

Many people feel as though they are unworthy of dating and go on to live a life alone and isolated without ever finding love or having a family of their own. Many people withdraw from everything because what’s the point when their future feels bleak?

80% of people that carry the virus are asymptomatic meaning they have no symptoms. Doctors will refuse to test without symptoms which leads to the spread of herpes. People believe they are STD free when they in fact have herpes. It’s worth noting that herpes is not included in a full panel testing and you have to ask for it specifically - and even then, doctors will refuse to test without the presence of symptoms, contributing to the spread.

Unfortunately for the minority that do experience symptoms, they carry the burden of telling future partners about their diagnosis and living in stigma as well enduring the physical and mental pain caused by the virus. Mind you, this is only a small portion of people that actually know they have the virus (20%). The other 80% are asymptomatic and are spreading the virus.

Herpes can spread and cause complications. it can be fatal to newborns (particularly for asymptomatic folk that don’t know they are shedding), it can spread to the eyes causing blindness and can spread to the brain causing encephalitis. It also has links to dementia in later life.

I have HSV2 which I’ve managed to spread to my eye. My vision is impaired and I live with the reality that I will go blind one day. There is a lack of research focusing on ocular hsv2 and outdated medications for oral and genital herpes. Many people become resistant to medication after some time.

We need a cure, more focus on research, better education and new medication. this virus impacts people from all walks of life. Something like 1 in 4 people have herpes. You know someone with herpes - but they are fighting a silent battle. It’s not your problem until it is. Herpes ruins lives. Please vote for this. We need change.

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Donald Trump, we need your help to accelerate the process for a cure! :pray:t2:

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I too have been infected with HSV 2. I was working for a large enterprise tech company and was a very quiet and introverted person and met a guy who i started to trust and he ended up raping me. He infected me with HSV 2. I struggled emotionally with the rape and then found out he infected me with an incurable disease. He took my life away from me and controls me through the infection. I have struggled with mental health and can not move on with life as it will always be apart of me, he will always have a hold on me. I fear the idea of having a child and risk passing it and causing encephalitis to my infant in child birth. This has effected my life, relationships, and job.

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There’s a super powerful drug against herpes/cold sores/hsv1/2, called Pritlevir. Available in Japan, 20x better then Aclovycir, without the risk’s for kidney damage. But the FDA is using pharmafare pressure tactics to prevent it from being available worldwide, using some phoney fabricated monkey study with extremely unrealistic dosages.

We need Pritlevir now!!!

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