General Articles

Why is there a Herpes Viruses Association? 

Herpes simplex is the medical name for cold sores as well as for genital herpes infection. There are two types of herpes simplex virus and either can cause symptoms on the face or genitals, depending on which area of skin was infected. Chickenpox/shingles and glandular fever are also herpes viruses.  

No other sexually transmitted infection (STI) has a charity or support network – outside the field of HIV. Looking at the medical importance of the STIs that are routinely checked for, herpes simplex is well down the list.  

Recurrences of herpes simplex, should they occur, can be irritating but they don’t cause medical problems.  However a diagnosis of herpes simplex may result in anxiety or despair in some people and Herpes Viruses Association (HVA) website has a “stigma” article explaining how the stigma evolved. The short version is that, in the USA, various circumstances coincided. 

• Burroughs Wellcome had a new drug to sell. By saying “herpes” instead of “cold sores” they could encourage people to seek medication for something that had never been treated by doctors before. 

• Children growing up in the Baby Boom era were less likely to catch cold sores, as standard of living improved. This meant that they reached adulthood without the protection that cold sores on the mouth previously provided against catching the virus genitally. 

• Fewer condoms were being used as “the pill” became available to women in the 60s. 

• The 1967 “Summer of Love” resulted in a sudden rise in STIs (and pregnancies) in the following two years. 

This rise in cases was seized by the “righteous right” in the USA as a bogey-man to discourage “free love”. The press was enthusiastic in publishing scare-stories about this ‘sexual condition’ that had previously been regarded as a dermatological complaint. 

The UK press repeated the articles and so the UK ‘caught’ the herpes stigma from America. In non-English speaking countries, there is no similar stigma.  

Why did I take this job? 

Having acquired the stigma, along with the virus, I “knew” my sex life was over. Therefore, a radio interview with a woman who was setting up the new HVA charity was a sudden ray of hope. I got in touch and over the next months, I slowly acquired the information I needed to resume a normal sex life. 

In 1995, the then director of the HVA retired, and from being a part-time administrator and volunteer, I took on the role. 

All Chief Executives of charities must be passionate about their cause. We have to get the charity’s message across clearly to the people we are helping, as well as to the medical profession, funders, the media and the general public. So, you have to believe in the cause and understand the virus its implications. As someone who personally had her life saved, I am dedicated to saving others. 

In June 2024, in the King’s Birthday Honours, I was awarded an MBE in recognition of my work of 30 years with the charity. 

What support do people need from the charity? 

For the public, the HVA website has a totally different tone from others and provides clear, fact-based advice. People constantly send messages saying things like: “After Googling I came across your website and a weight lifted off me”. The information we use throughout is based on the guideline from the British Association of Sexual Health and HIV (BASHH) expert doctors. All our helpline volunteers have the virus themselves, so can totally empathise with callers, and receive thorough training in the facts. We also answer emails which often turn into long threads. We provide Zoom chats open to anyone, as well as a monthly meet-up in London.  

Callers may need emotional and psychological support, but this has to be based on the solid facts such as: 

• Herpes simplex (HSV) is very common. By age 25 about 7 in 10  carry the virus and the rate goes up as you reach older age groups. 

• Most people who catch it, don’t notice that they have. 

• It does not cause any medical problems, unless it is caught in the last months of pregnancy.  

• There is no legal obligation to mention it to a new partner. 

• You can have a normal sex life. 

Sometimes callers are asking questions about medication, or childbirth. A common, and unanswerable question, is “Who did I get this from?” The virus can lie dormant in a person for years before appearing as a breakout, so we can only reply with probabilities.  Callers may be parents of the affected person. Often prospective partners are pointed towards our website and helpline by the diagnosed person so that they can educate themselves before deciding to continue the relationship. 

What is the benefit in becoming a subscriber? 

We encourage people to subscribe to obtain more detailed information, particularly on the topic of “how to talk to a new partner.” This is perceived as a major hurdle by many people. Although there is no legal requirement that a person mentions any STI that they may have (guideline from the Crown Prosecution Service), many people feel that for them, it is the right thing to do. 

 What challenges does the charity face? 

Resistance to spreading good news stories … 

The HVA’s first director asked the Greater London Council (as it was then) for two years’ funding. He thought that if the media could be given the correct information about “cold sores on the genitals” the charity could close its doors. Unfortunately, “good information” and “stories with a happy ending” are rarely “news”. This was driven home when in about 1994, an interview with a member that we facilitated for the Evening Standard, was give the title “How Herpes Ruined my Life” when actually, after a rocky start, she described how she was living happily with a husband and two little boys! 

In the early days, suspicion from the medical profession… 

In the 1980s and 90s, many health charities were set up with funding from pharmaceutical companies keen to get patients to demand that their new drug be put on the list of accepted treatments. This charity was set up by patients without drug company funding. Nonetheless, over the years, the charity has had to prove that it is not just a drug company puppet.  

Now, our sound, impartial, non-judgmental advice means that sexual health clinics around the country routinely signpost all their newly diagnosed patients to our resources. I am  a lay-member of the medical writing team for herpes simplex guidelines, and the lay-representative on the BASHH special interest group on HSV. 

And lastly, stigma leads to lack of fundraising… 

If you fundraise for charities tied to life-limiting conditions such as cancer or HIV no one assumes you have that. Unfortunately, the people with herpes simplex are reluctant to fundraise as they feel that it would be automatically “outing” themselves as carrying the virus. Likewise, because of the stigma associated with herpes simplex in English-speaking countries, corporate donors do not see any social benefit from reporting to shareholders or customers that they have supported the HVA 

This means that the charity survives on a very low income made up primarily of subscriptions, donations and profits from sales of creams and immune support capsules that we have tested on our subscribers. 

If anyone reading this article would like more information about herpes simplex, the items we sell, or to fundraise for us, please get in touch: info@herpes.org.uk.