How herpes got its stigma
“It is easier to fool people than to convince them that they have been fooled.”
– Mark Twain
(You can download the article on stigma as a PDF if you wish.)
For anyone in the twenty first century it is hard to believe that there was a time when ‘herpes’ was not a stigmatised and feared condition. But this is true. Less than forty years ago genital herpes was largely ignored. Newly diagnosed patients were not made to feel that a common skin condition had just ended their chance of having future relationships. Doctors knew that they were simply dealing with the manifestation of the common facial cold sore on a different site and they treated it appropriately. In the early 1980s things changed. How and why did this happen?
The history of the genital herpes stigma dates back a mere 30 years. Before then, the condition, which was first named by the Ancient Greeks, was well known to doctors – but it was not invested with the terror it commands today and the word herpes barely registered with the public.
Two viruses are responsible for genital herpes and facial cold sores. They are called herpes simplex type 1 (HSV-1) and herpes simplex type 2 (HSV-2). Either virus may be caught in either place.
The start of modern sexual health services
The modern era of sexual health treatment in the UK began in 1917, with the passing of the Venereal Disease Act as millions of soldiers who had been mobilised during the First World War returned home and began to infect their partners with the ‘social diseases’ they had acquired. This led to a public-health crisis that terrified the government of the day, so a network of publicly funded clinics was set up. The Venereal Diseases Act of 1917 named syphilis, gonorrhoea and soft chancre (or chancroid) as dangerous diseases for which free treatment was to become compulsory. Genital herpes was not on the list. It was known to be common and self-limiting and was rightly considered to be no more significant than a facial cold sore.
Little changed in the intervening 60 years. Public-health films were shown in cinemas to encourage fidelity and abstinence. They highlighted the horrors of syphilis and gonorrhoea while herpes was ignored. Indeed, genital herpes was so far below the radar that, as recently as 1975, the standard textbook for obstetric and gynaecological nursing did not even have the word herpes in the index. In the same year, research into “Psychological morbidity in a clinic of STDs” didn’t include patients diagnosed with genital herpes. These omissions would be unimaginable today.
However, from the 1940s onwards, antibiotics had succeeded in vanquishing previously feared bacterial infections like syphilis and gonorrhoea. Pharmaceutical research moved on to the next holy grail: antiviral drugs.
The role of antiviral drugs
Finally in the late 1970s, one company, Burroughs Wellcome, succeeded in creating a viable antiviral drug. The drawback was that it only affected a few viruses in the herpes family, namely chickenpox and herpes simplex. At the time, in most cases, these were not usually considered serious enough to require treatment at all and there was no pent-up demand for expensive new drugs for them. Almost everyone who caught these common infections recovered without treatment. Most patients were only offered palliatives. Herpes simplex has the ability to recur, usually causing minor skin lesions that heal spontaneously. Chickenpox is a common childhood ailment that scarcely affects healthy children and causes no further problems unless it recurs as shingles, which mainly occurs in the elderly.
Having developed aciclovir, the drug company required a return on investment. But its marketing department had a problem: none of the conditions the drug might be used for required treatment except in extreme cases.
The herpes stigma is born
The answer was to pitch the drug at genital herpes patients. The trick would be to persuade them that the condition was serious enough to warrant expensive drug treatment. A disease-awareness campaign was organised to alert doctors and patients to the benefits of the new drug. The case was made by ‘marketing’ genital herpes so that it acquired the status of an important disease.
The strategy was spectacularly successful. Articles began to appear in newspapers. In the US, herpes became the cover story for Time magazine twice. Anything negative about the condition was highlighted in order to raise public concern. The masterstroke was to use the word ‘incurable’ to make genital cold sores seem serious. More than any other single thing, this created the stigma that has never gone away. Thrush, chickenpox and glandular fever are among a host of infections that stay in the body but most people are unable to name any apart from ‘herpes’.
The marketing of antiviral drugs was one of the most successful examples of a process that is now known as ‘disease-mongering’ – exaggerating the importance of a condition in order to increase sales of a treatment. Once herpes hit the big time, the success of aciclovir was assured. This echoed the marketing of the antiseptic mouthwash Listerine in the 1920s, which turned a floor cleaner into a cure for ‘chronic halitosis’.
In the words of advertising scholar James B Twitchell, ‘Listerine did not make mouthwash as much as it made halitosis’. The American company, Burroughs Wellcome sponsored support groups to advise ‘sufferers’ of the benefits of the new drug. In the UK, a charity emerged, the Herpes Viruses Association (HVA). To begin with, it was unaware of the fact that its appearance had resulted from a drug-marketing campaign. A helpline was set up and was immediately besieged by newly distraught patients. One said, ‘I wish I had cancer, then at least people would feel sorry for me. As it is, I can’t even tell them what I’ve got.’ The HVA’s first director believed that if he spent two or three years setting the record straight, the charity could then be wound up. Thirty years later, it is still going strong and is needed more than ever.
Genital herpes is now accepted as one of the most stigmatised of all medical conditions. A Harris Interactive poll in the US in 2007 found that 39 per cent of patients were troubled by social stigma and 38 per cent made up excuses to avoid sex during an outbreak, rather than tell a partner. Only HIV was ranked higher for stigma, a truly bizarre finding for an infection that is carried by at least three quarters of the population.
Herpes: common and largely undiagnosed
Herpes simplex is a largely hidden condition because most people get mild symptoms or none at all, so they are not diagnosed. Prevalence is high and one recent study of thousands of women in Australia between the ages of 35 and 44 found that 85 per cent have HSV-1 and 22 per cent have HSV-2. The HVA divides its time between advising a relatively small number of people who experience recurrent symptoms and reassuring a much larger number about transmission. Symptoms can normally be treated or prevented once people know learn to recognise the first signs.
A more difficult task is explaining the origin of the stigma and the reasons why it is unnecessary. Marian Nicholson, the HVA’s director said, ‘Over and over again, callers to our helpline say, “I can deal with my symptoms, they don’t bother me, but I am terrified of passing this on to a new partner.”’ Sufferers fear rejection, although an HVA survey has shown that this usually doesn’t happen. The artificially created stigma caused the problem that has given this charity its raison d’être. Genital herpes may now be perceived by some people as a social and sexual death sentence.
If herpes simplex is serious in any sense at all it is because of the stigma, not the condition itself. For comparison, influenza is not usually considered to be serious, although it kills thousands of people every year in the UK. This makes flu far more serious than herpes.
Thirty years on from the great marketing campaign, the stigma remains and is now bolstered by jokes, internet chat rooms, dating services and purveyors of fake ‘cures’. Is there a dating service for ‘sufferers’ from facial cold sores? No. Why not? A hundred years ago, the British Royal Commission that led to the setting up of the UK’s sexual health services was clear when it named the infections that required diagnosis and treatment. Genital herpes was not on the list for sound medical reasons. Back then, nobody had tried to fool people about it.