Summary

The Herpes Simplex Viruses (HSV), HSV-1 and HSV-2, are incurable, lifelong and extremely common with billions of sufferers worldwide. HSV is also linked to many other health issues including Alzheimer’s, HIV, and blindness and is one of the reasons why The World Health Organisation has recently issued a plea for a cure for HSV.

The current way herpes is dealt with for sufferers and their partners are inadequate and we need to demand more.

Petition Overview

This petition addresses four pivotal aspects that need changing:

1. Testing: Testing procedures are inadequate and lack accuracy.
2. Transmission: There is no effective way to completely prevent transmission to loved ones.
3. Treatment: Current treatments are ineffective, expensive, and cause serious side effects.
4. Cure: There is no cure, functional or sterilising, for HSV.

We have created this petition to show that there is a huge demand for improvement and your signatures will help do this.

This petition will be presented to health and government officials, policy markers, regulators, and pharmaceutical companies worldwide to ensure they make this an urgent priority.

We want new developments in herpes simplex research to be fast-tracked, putting an end to the suffering of billions of people.

1 Background

Despite the prevalence of HSV many are not aware of their infection, the dangers and ease of transmitting the virus, and the additional health implications of contracting the virus. 

1.1 HSV-1

HSV1 is most commonly seen orally. The World Health Organisation estimates that 66% of the world’s population has HSV1 (1). Whilst HSV1 ‘prefers’ the facial area, it can also occur genitally, on the eyes (herpes keratitis) and on the fingers or toes (whitlow). 

1.2 HSV-2

HSV2 is more commonly seen genitally. The World Health Organisation estimates that 13% of the world’s population has HSV2 (1). Whilst HSV2 ‘prefers’ the genital area, it can also occur in the facial area, eyes (herpes keratitis) and on the fingers or toes (whitlow).

Despite the prevalence of herpes there are still no cures for the billions of sufferers.

2 Testing: Current testing methods are not good enough.

Most people don’t know they have herpes.

80% of people with HSV are asymptomatic (i.e. do not show symptoms), have such minor episodes that they miss it, or may even mistake it for something else (3,4). 

Most medical practitioners do not know how to best test for HSV.

Testing for HSV falls into the following categories:

• Physical Examination:
  • Most commonly used and the least accurate. Can only occur with visible symptoms.
  • False positives accrue 20% of the time
  • The CDC recommends that all physical examinations are backed up with a laboratory test.
• Swab Tests (there are various types of swab tests which are done when lesions are present, the two main ones are below):
  • Viral Culture: A study found false negatives to occur 76% of the time  - i.e. results came back negative when it should have been positive (2);
  • PCR: more sensitive than culture test but still returns false negatives.
• Blood Tests:
  • Can tell whether you have had Herpes even if you have not had symptoms before.
  • Can distinguish between HSV1 and HSV2, but can not tell you what part of the body you are infected (genital or oral);
  • Western Blot - Type of blood test and is the only reliable one. Good for testing long standing infections but is only available at The University of Washington.
  • IgG - type of blood test, picks up HSV2 92% of the time, but misses 30% of HSV1. This test also gives off false positives.
     

There are further issues in that many believe that they are tested for HSV when they get a sexual health checkup. Even if you ask to be checked for everything, most of the time HSV is not included. 

We need better testing methods, to test in STD panel checks and greater availability of Western Blot to protect ourselves and our partners and help prevent transmission. 

3 Transmission: There is no way to fully protect yourself and partners.

Most people do not know they have HSV and do not take the necessary precautions to prevent transmission. Even when someone is aware of their HSV status there is no way to fully protect against transmission. 

Most people contract oral HSV as children from their parents or close relatives. However, once contracted orally, HSV can then be transmitted to another person genitally by engaging in oral sex. In fact, 75% of new cases of genital herpes, in college students, are caused by oral sex (2).

Likewise, you can also contract HSV orally by engaging in oral sex with someone who has HSV genitally.

Even when there are no visible signs of blisters, transmission can occur. In fact, 70% of new infections occur in the absence of any visible symptoms (2). This is due to something called ‘asymptomatic shedding’. Essentially, the virus sheds in the region where you contracted it. For example, if you contracted it genitally then the shedding can occur in the ‘boxer shorts region’. If you contracted it orally then shedding occurs from the face. 

It is impossible to know (bar daily testing) when you are shedding and thus when you are contagious, making transmission easier.

Furthermore, even when engaging in safe sex, HSV can still be passed on. Whilst the use of condoms reduces the risk of transmission, this reduction is not adequate to prevent an uninfected partner from contracting HSV. For example, transmission from an infected woman to an uninfected man is only reduced by 30%-50% (2) with the use of condoms.

We need better treatments and a cure to help protect ourselves and our loved ones from transmitting and contracting herpes. 

4 Treatment and Cure: Why do we need better treatment and a cure?

4.1 Physical Symptoms

While many people infected with herpes simplex viruses are asymptomatic, for those who do develop symptoms, these are often severe. 

People with symptomatic HSV often have lesions which can cause debilitating pain. People that have it genitally may experience pain when urinating and walking, whilst people that have it orally may get painful cold sores. Some infected also complain of constant tingling or nerve pain which manifest as a pain down the leg, thigh, or buttocks (5). This physical pain from HSV can also re-occur very often, causing the infected person to go through this pain every month.

Typical Herpes symptoms go through 5 stages which can last up to two weeks (20):

• Stage 1: Tingling and itching 24 hours before blisters
• Stage 2: Fluid-filled blisters appear
• Stage 3: The blisters burst, ooze and form painful sores
• Stage 4: The sores dry out and scab over causing itching and cracking
• Stage 5: The scab falls off and the cold sore heals 

4.2 Mental Health Implications

There are also serious mental health implications relating to HSV. The obvious ones of embarrassment are a common occurrence as well as newly infected people questioning whether they will be able to find a partner or form a relationship.

According to Doctor Hunter Handsfield (professor emeritus at the University of Washington), one of the greatest fears and anxiety inducing thoughts is transmitting the virus to a partner, or disclosing the virus to new partners (21). The mental implications of herpes  is corroborated in the literature which indicates HSV diagnosis can lead to depression, anger, lack of self-esteem and suicidal tendencies (6, 7, 8).

A large-scale study showed an association between HSV  infection and the risk of attempting or committing suicide in an otherwise healthy population. People diagnosed with HSV  had a 1.40 times higher risk for suicidal behaviour and a contributing causal factor for development of any psychiatric disorder (7).

Further, big data scientist, Seth Stephens-Davidowitz, found that the number one search that people Googled before “how to commit suicide” was a health problem. The most common health problem searched? Herpes (8).

4.3 Gender and Social implications

4.3.1 Women

Women are twice as likely then men to have HSV due to their anatomy. Studies show 1/5 women have HSV versus 1/10 in men (22). In 2016, The World Health Organization showed that 313 million women were infected with HSV-2 versus 178 million men. African-American women are affected to an even greater extent with 1/2 infected with HSV (23).

4.3.2: Minority Groups

The herpes virus disproportionately affects minority groups. The United States Center for Disease and Control (CDC) has listed that Non-Hispanic Black Persons live with the highest proportion of HSV-2, while Hispanic, namely Mexican-American individuals are the most prevalent carriers of HSV-1 (22).

Reasons for racial and ethnic disparities include lack of access to education, testing, treatment and healthcare. 

4.4 Additional health implications

Infection with HSV also puts people at risk of the following health conditions:

4.4.1 Neonatal herpes

A pregnant woman is at risk of passing Herpes to a newborn baby which occurs 1 in every 3,000/20,000 live births where the mother is infected (9). As a newborn’s immune system is not fully formed, the risk of contracting herpes can range from mild to severe and life-threatening (9, 10, 11).

4.4.2 Herpes Keratitis

The herpes virus can also infect the eye, which in severe cases can lead to scarring of the cornea or blindness. Herpes Keratitis affects approximately 10 million people worldwide, with 1.5 million new cases each year. Herpes Keratitis is the main cause of blindness from infections globally (12, 13).

4.4.3 HIV

There is an estimated 2- to 4-fold increased risk of acquiring HIV, if individuals with genital herpes infection are genitally exposed to HIV (14, 15, 16). Combating herpes could have a major impact in reducing the worldwide prevalence of HIV.  

4.4.4 Alzheimer's

There is a growing body research to indicate that herpes might cause or increase the risk of Alzheimer's (17, 25, 26). A 2020 study showed herpes infection increased the risk of Alzheimer's between 2.7 to 3.7-fold in ApoE4 carriers (25, 26).

We need better treatments and cures, without which billions worldwide will continue to suffer in the above outlined ways.

5 Treatment: Current treatments are not good enough

Whilst there is no cure for herpes, there are treatments available to help prevent the recurrence of outbreaks and reduce, although not eliminate, shedding.

These include Acyclovir (Zovirax) available from 1982; and Valacyclovir (Valtrex) available from 1987; and Famciclovir (Famvir) available since 1994 but has since been discontinued (18).

These are all taken in pill form on a daily basis. The side effects can include, headaches, dizziness, nausea and vomiting, diarrhoea, and skin sensitivity (24). 

Despite the advancement of modern day medicine it has been 30+ years since an effective drug to treat HSV has come out. Even The World Health Organisation has outlined the need for better treatments and a cure (19).

We need better treatments to eliminate the physical and mental anguish for those infected and prevent transmission to uninfected people. 

6. Cure: There are no cures.

There are currently no cures for herpes. Once infected, you are infected for life.

Whilst there are pharmaceutical companies working on a cure this has also been the case for many years, often with new cures falling at the last hurdle.

We need a cure to end herpes once and for all.

7. Potential vaccines and gene therapies to be fast-tracked

There are several vaccines and gene therapies that are either in trials or close to being trialed. These include:

7.1 Dr. Keith Jerome at Fred Hutch

Currently developing a gene therapy to fully eradicate HSV-1 and HSV-2. So far, his team has removed over 95% of latent HSV-1 in mice, effectively curing the disease since the remaining 5% of the latent virus remained inactivated (27).

Dr Jerome has now begun similar work to cure guinea pigs with a personal goal to start human clinical trials in late 2023. 

The HerpesCureResearch activism group have raised over $450,000 to fully fund this project enabling the team to avoid lengthy waits for grants and accelerate the process by two years.

Donation can be made to this research here: https://fredhutch.org/hsv 

Latest video update on curing mice from Dr Jerome is here: https://youtu.be/Tk5EO6RerCk

Latest Q&A produced for HerpesCureResearch group here: https://youtu.be/ZK9YlbgOJTo

Next update on guinea pig tests will be available in Aug/Sep-21.

7.2 Dr Harvey Friedman at Penn University in collaboration with BionTech

The team is working on prophylactic and sponsored therapeutic research, with the latest mice studies by Dr Friedman have shown vaccine candidate is effective at preventing genital infection caused by HSV-1. Previous publishings show that the vaccine prevents HSV-2 genital infection in mice and guinea pigs too.

Phase I trials expected to begin in early 2022 - currently ensuring FDA safety standards are met)

The HerpesCurereResearch group is also helping fund this research.

Donations can be made here: http://givingpages.upenn.edu/HSVresearchfund

Latest video made for HerpesCureResearch can be found here: https://bluejeans.com/s/JEbK5NDJcdw

Latest research paper and results here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7410331/

7.3 Sterilising Cures

Some companies working on sterilising cures include: Excision BioTherapeutics (28, 29); and, Shanghai BDgene Co., Ltd (30, 31).

7.4 Functional Cures

Some companies working on functional cures include: Sanofi Pasteur (32); Redbiotec (33, 34); X-Vax Technology (35); Rational Vaccines (36); GEN-003 - Genocea/ShionogiVaccine (37); Excell BioTech - EXD-12 (38); SADBE (SQX770) - Squarex (39, 40, 41).

7.5 Anti-viral improvements

Some companies working on anti-viral improvements include: UB-621 / United BioPharma (42); HDIT101 / Heidelberg ImmunoTherapeutics (43); Pritelivir - AiCuris (44, 45); NE HSV-2 - BlueWillow (46); GSK4108771A (HSV-2) - GlaxoSmithKline (47).

For more information on the above vaccines and cures please click follow this link: https://www.reddit.com/r/HerpesCureResearch/comments/kg66ds/latest_research_updates_especially_for_new_joiners/

Too often potential vaccine and cure candidates have fallen by the wayside. Signing this petition will show this drug companies the huge demand that there is for improvements.

We need to ensure these treatments and cures are not only considered important by the pharmaceutical companies developing them, but encourage government officials and other organisations like WHO and CDC to actively help drive these forward.

8. Summary

Herpes affects billions of people globally. It has dire physical and mental health implications. It has further health implications for those infected.

There is no way to prevent the transmission of herpes, there are no adequate treatments and there is no cure.

This petition will help put pressure on the relevant public and private organisations to help push towards an end to herpes and request them to speed up the development and commercialisation of all potential vaccines and gene therapies so we can help bring the suffering endured by those with herpes to an end quickly. 

As stated by Dr Meg Doherty, Director of the WHO, better treatment and a cure for HSV would  “protect the health and well-being of millions of people, particularly women, worldwide” (19).

Additional information

This petition has been put together by HerpesCureResearch, a grassroots organisations of unpaid volunteers that work on promoting better treatments and a cure for herpes.

For more information on the group please visit us at our social media

Reddit: https://www.reddit.com/r/HerpesCureResearch/ 

Facebook: https://en-gb.facebook.com/groups/herpescureresearch/

Sources

1. https://www.who.int/news/item/01-05-2020-massive-proportion-world-population-living-with-herpes-infection
2. https://westoverheights.com/wp-content/uploads/2014/08/Updated-Herpes-Book.pdf
3. https://www.cdc.gov/std/herpes/stdfact-herpes.htm#:~:text=Most%20people%20who%20have%20genital,herpes%20do%20not%20know%20it
4. https://newsinhealth.nih.gov/2010/11/herpes-hiding
5. https://www.webmd.com/genital-herpes/qa/how-painful-is-herpes-simplex
6. https://pubmed.ncbi.nlm.nih.gov/9163020/#:~:text=Genital%20herpes%20causes%20considerable%20psychological,in%20women%20than%20in%20men
7. https://www.sciencedirect.com/science/article/pii/S0306453019302963
8. https://www.mamamia.com.au/celebrities-with-herpes/
9. https://www.aafp.org/afp/2002/0315/p1138.html
10. https://www.nhs.uk/conditions/neonatal-herpes/
11. https://rarediseases.org/rare-diseases/herpes-neonatal/
12. https://www.ncbi.nlm.nih.gov/books/NBK545278/
13. https://www.cdc.gov/contactlenses/viral-keratitis.html#:~:text=The%20infection%20usually%20heals%20without,common%20cause%20of%20corneal%20infections
14. https://pubmed.ncbi.nlm.nih.gov/16327322/
15. https://pubmed.ncbi.nlm.nih.gov/22384842/
16. https://pubmed.ncbi.nlm.nih.gov/15021308/
17. https://www.statnews.com/2020/05/06/researchers-show-herpes-link-to-alzheimers/
18. https://www.empr.com/home/news/antiviral-agent-no-longer-available/
19. https://www.who.int/news/item/01-05-2020-billions-worldwide-living-with-herpes 
20. https://www.healthline.com/health/herpes-labialis#symptoms
21. https://www.google.com/search?q=professor+emeritus&oq=professor+em&aqs=chrome.1.69i57j0i433j0l3j46j0l4.4123j0j7&sourceid=chrome&ie=UTF-8
22. https://www.cdc.gov/std/statistics/default.htm?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fstd%2Fstats%2Fdefault.htm
23. https://www.womenshealth.gov/a-z-topics/genital-herpes#18 
24. https://www.nhs.uk/medicines/aciclovir/
25. https://www.alzforum.org/news/conference-coverage/adpd-more-evidence-herpes-and-alzheimers-disease 
26. https://pubmed.ncbi.nlm.nih.gov/31914220/ 

27. https://www.nature.com/articles/s41467-020-17936-5 

28. https://www.bizjournals.com/sanfrancisco/news/2021/02/17/hiv-aids-excision-biotherapeutics-herpes-hepatitis.html

29. https://www.excision.bio/technology

30. https://clinicaltrials.gov/ct2/show/NCT04560790?recrs=ab&cond=Hsv&draw=2&rank=25

31. https://bdgenetherapeutics.com/

32. https://clinicaltrials.gov/ct2/show/NCT04222985

33. https://www.redbiotec.ch/hsv-2/

34. https://www.redbiotec.ch/wp-content/uploads/20170926-Redbiotec-HSV2-program.pdf

35. https://x-vax.com/

36. https://rationalvaccines.com/science/

37. https://www.globenewswire.com/news-release/2020/05/19/2035543/0/en/Genocea-Announces-Material-Transfer-and-License-Option-Agreement-with-Shionogi-for-Proprietary-GEN-003-HSV-2-Antigens.html

38. https://www.excellbio.io/pipeline/

39. https://www.jaad.org/article/S0190-9622(20)30561-2/fulltext

40. https://sci-hub.se/10.1002/iid3.241

41. https://squarex-pharma.com/

42. https://clinicaltrials.gov/ct2/show/NCT03595995 

43. https://clinicaltrials.gov/ct2/show/NCT04165122 

44. https://clinicaltrials.gov/ct2/show/NCT03073967

45. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4880060/ 

46. https://bluewillow.com/ 

47. https://clinicaltrials.gov/ct2/show/NCT04762511