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How the stigma was invented by a drug company

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The ‘herpes stigma’ is a comparatively recent phenomenon and results from a pharmaceutical marketing exercise. Prior to the development of antiviral drugs, cold sores and genital herpes (both caused by herpes simplex viruses) were only treated symptomatically – symptoms could be alleviated but not prevented. Neither condition was considered to be a significant medical problem – standard medical textbooks such as “Obstetric and Gynaecological Nursing” by Rosemary E Bailey, 1978 edition, did not even mention it.

A 1975 study of “Psychological morbidity in a clinic for sexually-transmitted disease” (Richard Mayou, The London Hospital).[1] In the Journal of Clinical Investigation,[2] Pedro Cuatrecasas states, “during the R&D of acyclovir (Zovirax), marketing [department of Burroughs Wellcome] insisted that there were ‘no markets’ for this compound. Most had hardly heard of genital herpes...” Thus marketing the medical condition – separating the ‘normal cold sore’ from the ‘stigmatized genital infection’ was to become the key to marketing the drug, a process now known as ‘disease mongering’[3]

The ‘awareness’ or concern among patients, caused by this disease-mongering led directly to the meeting of Blanks and Woddis and the birth of the Herpes Viruses Association, though it was some time before the connection between the two events was fully appreciated.

In the USA, prescription drugs can be advertised directly to the public. The Burroughs Wellcome advertising campaign was designed to stimulate demand for Zovirax by alarming patients about the social consequences of infection and emphasising that the drug could reduce outbreaks and transmission.

The campaign created the stigma which has clung to genital herpes ever since.[4][5][6]

It is conjectured that the reason for lack of the same level of stigma in many non-English speaking countries is that, in many languages, the word 'herpes' is used for cold sores. Therefore when a genital infection is labelled 'herpes', the link to granny's cold sores is made. This makes it less likely that the patient will be alarmed by the diagnosis.

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Yes. Invention is the correct word. Herpes has been a part of normal life for over 4500 years.

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Yes. Invention is the correct word. Herpes has been a part of normal life for over 4500 years.

Probably longer, but than again GlaxoSmithKlein and "the daily Valtrex" weren't around by then. A few thoughts:

- In societies where drug companies cannot advertize prescription medication to the public directly, the way Glaxo did in the US, the stigma was not created. I would say that's the case of most European societies, where herpes remains a private medical condition. We don't obsessively talk about it, we do not indulge ourselves in the creation and recreation of this "disease" in the public sphere or through the media, we do not make it into a public health catastrophe, and somehow, we've managed to stay well behind the US in terms of infection rates (1 in 4 or 5 people may be infected with HSV 2 in the US, in Europe it may be around 1 in 9 or 10 in most countries). Some attempts have been made by this same company, and also Novartis, to convince the medical community in Europe that there is a catastrophe down here as well and that herpes is very serious and people need more medication, but apparently with not much sucess. They have sponsored several studies to evaluate HSV 2 rates in Europe - in the name of science and the common good, of course - but this literature remains confined to a few medical magazines and did not have a great impact.

- It's good that we have medication to treat this condition, but in the end what really moves these people is money, and they need to make it, whichever way they can. The latest trend - once again in the US - is to convince people that they should not treat their herpes episodically, but supressively: take medication every day. High profile so called "specialists" are paid and sponsored to launch and relaunch studies about "viral shedding" that can only be stopped through Valtrex, and if we already knew that people with herpes might be at higher risk of contracting HIV due to having occasional sores, now the Glaxo sponsored studies take it to microcelular level, showing that even without sores there's enough stuff there to put you at risk all the time, no matter what you do to protect yourself. More and more studies are also sponsored to show that people are shedding virus from every corner and are infectious all the time. They know that with all this negative propaganda what HSV positive people fear the most is to infect anyone else with the virus. They can be told that suppressive therapy is the only way to stop infecting everybody and get at least some peace of mind.

- All this suffering and pain and torture and stigma people go through began one fine day, not long ago, when this company began this marketing strategy. The American teenage girl that collapses in front of her doctor, crying and wishing to kill herself because of herpes is paying the price of this marketing. Soon, through the Internet, this kind of phenomenon might spread to other places outside the US - as it did in most Anglo-Saxon countries. That possibility truly bothers me.

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For some reason (probably because we don't have as many "real" problems as people in other parts of the world who have to worry about civil wars and communism, for instance), American's seem to have more time to be afraid of very simple things. Especially things that well-timed marketing campaigns have taught us to fear! Thanks for this post!

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Excerpt from Nigel Scott's article in Spiked magazine, "The courts should keep out of our sex lives", which can be read here:

You might also find interesting how this same company made huge profits in the early 90s through grotesque and very criticized ads directed to HIV positive gay men, when few drugs were available to treat this condition:



Nigel Scott, who is also a Lib-Dem politician in the UK

The start of modern sexual health services

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 modern era of sexual health treatment in the UK began in 1917, with the passing of the Venereal Disease Act as millions of soldiers mobilised during the First World War returned and began to infect their partners with the ‘social diseases’ they had acquired. This was a public-health crisis that terrified the government of the day, so a network of publicly funded clinics was set up. The Act named syphilis, gonorrhoea and soft chancre (or chancroid) as dangerous diseases for which free treatment was to become compulsory. Genital herpes did not get a look in. It was known to be a common, self-limiting condition and was rightly considered to be no more serious than a facial cold sore.

Little changed in the intervening 60 years. Public-health films were shown in cinemas to encourage fidelity and abstinence, and these films 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. This omission would be unimaginable today.

The role of antiviral drugs

Meanwhile, antibiotics had succeeded in vanquishing previously feared bacterial infections like syphilis and gonorrhoea. Pharmaceutical research moved on to the next holy grail: antiviral drugs.

Finally in the late 1970s, one company, Burroughs Wellcome, succeeded, but it came up with an antiviral drug that only worked on viruses that were emphatically not in the frontline of dangerous diseases. The drug, aciclovir, only treated herpes simplex and herpes varicella/zoster – the viruses responsible for genital herpes/cold sores and chickenpox/shingles respectively. Patients with these relatively unimportant infections had, until then, only been offered palliatives. All these conditions are essentially self-limiting and they clear in days without treatment. Herpes simplex may recur in a milder form before symptoms clear once again. 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.

So having developed aciclovir, the drug company required a return on investment. But its marketing men 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 word ‘incurable’ was harnessed to make genital cold sores seem serious. Rare cases of fetal infection were described as if they posed a threat to every infected pregnant woman. The herpes stigma was born.

Disease-mongering had gone mainstream. The trick had been to market herpes, not aciclovir. 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’.

In America, 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), which I now work for. It was oblivious to the fact that its appearance had been prompted by 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 a virus 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 women 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 usually be treated or prevented once people know what to do about them.

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 has caused the problem that has given this charity its raison d’être. Genital herpes is now perceived as a social and sexual death sentence. (...)!

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Thanks for broadening my horizons! Any form of business is out to make a dollar. I didnt spend six years in college to be the average Jane. I love my career and truly have a passion for it, but my number one reason I work exhausting long hours is for the money. Most of us go to work everyday because its our only way of surviving. More money is always welcomed, but its not without long tedious workdays. That marketing strategy created a stigma that holds much power.

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Thanks for broadening my horizons! Any form of business is out to make a dollar. I didnt spend six years in college to be the average Jane. I love my career and truly have a passion for it, but my number one reason I work exhausting long hours is for the money. Most of us go to work everyday because its our only way of surviving. More money is always welcomed, but its not without long tedious workdays. That marketing strategy created a stigma that holds much power.

Movingslowly, thanks for commenting. This marketing strategy is the reason why people go through these horrors in the US (and in this forum). In places where these companies were not able to advertize to the public directly - like in Europe, for example - the stigma was not created. Forum members from several European countries and also Asia who've posted here have repeatedly said that. It seems to be a unique US paranoia, that has also spread, partially, to places like Australia or Canada, or the UK. The only way people will ever get rid of this down there is by exposing how it all began and how this stigma is maintained and perpetuated by these companies and their "sponsored" doctors and studies.

Another way these drug companies (Glaxo and Novartis) have found to promote their products for the "incurable disease", "the virus for life", is by recruiting some naif people, like this lady in Australia, called Jeannie May, who sees herself as a "herpes awareness campaigner" and goes on to promote studies by the drug companies, that do little more than to scare people. Anything sponsored by the drugs companies invariably promotes more stigma.


"Coincidentally, only a couple of weeks later, I have been offered an opportunity to realise that goal, taking Living Sphere to the people, in a completely different way – via the medium of television.

The Australian Herpes Management Forum (AHMF) are publicising the results of a new study which shows that women are twice as likely to contract genital herpes. The new statistics are 1:6 for women, and 1:8 in general.

I have been invited to particiapte in a couple of media opportunities to promote the results of this study on national television.

On the 18th May I was interviewed for a brief segment on Channel 9 News; followed by a live TV appearance on Channel 10′s 9am with David & Kim on the 29th May.

The opportunity to talk on TV about herpes and the challenges faced by people who have it is extraordinary. This is really getting herpes awareness ‘out there’. I could not have dreamt of a more exciting outcome!"

The Australian Herpes Management Forum is, obviously, funded entirely by Novartis, that makes the drug Famvir.

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I believing suppressive therapy isnt efficient. I developed resitance to two antivirals so those drug companies are no longer getting my $. I honestly wish for a therapeutic vaccine that eliminates or nearly eliminates all outbreaks and reduces transmission rates to nearly nothing. Just a one time shot in the arm would be ideal. Its a more feasible way to control the painful outbreaks and restore healthy relationships. Im thankful to be alive, but these painful outbreaks of blisters on the most sacred part of my body are destroying my overall health. All this from an asymptomatic partner.

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There really needs to be a more effective way to controlling herpes viruses in general. Although, genital herpes is the most stigmatized. Coldsores running in second place. The other herpes family members are not well known by general society. You would be surprised to know I work for a hospital. People with HIV are treated as if they are victims. You never hear HIV jokes. Let me remind you, I work with doctors from all practices, nurse practitioners, respiratory therapists, nurses, dieticians, physical therapists, and so on. I have heard a herpes joke by at least one professional from all specialties. They view herpes worse than cancer. People who come in the hospital for treatment and have herpes are talked about in a negative light. Hospital staff will say, "that is what they get for sleeping around." Coldsores are not so stigmatized in the state I live in. Its "okay" to have oral herpes but its not acceptable to have genital herpes. We honestly do live in dark ages.

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There really needs to be a more effective way to controlling herpes viruses in general. Although, genital herpes is the most stigmatized. Coldsores running in second place. The other herpes family members are not well known by general society. You would be surprised to know I work for a hospital. People with HIV are treated as if they are victims. You never hear HIV jokes. Let me remind you, I work with doctors from all practices, nurse practitioners, respiratory therapists, nurses, dieticians, physical therapists, and so on. I have heard a herpes joke by at least one professional from all specialties. They view herpes worse than cancer. People who come in the hospital for treatment and have herpes are talked about in a negative light. Hospital staff will say, "that is what they get for sleeping around." Coldsores are not so stigmatized in the state I live in. Its "okay" to have oral herpes but its not acceptable to have genital herpes. We honestly do live in dark ages.

Hi Movingslowly, thanks for the insight again. I've read about your difficulties to cope with this, not just emotionally, but also phisically. Don't give up on medication that quickly, and do find appropriate help. I'm sure you'll find something that will work and things will improve. About the rest... Doctors and professionals having a laugh at this... It is horrendous, and people like that should be shamed and exposed. In my country, and in most of Europe, because we did not allow the drug companies to spread their "message" directly to the public, herpes did not enter the realm of popular culture the way it did in the US. There are no jokes about it in my language, and i suppose they must be rare in other languages. Also, because we call the cold sores "herpes" in most languages, it did not become a feared word. So everything worked, and still works, to the benefit of the drug makers in the US, and they can even launch obscene campaigns to "increase awareness about herpes" (and make more money out of people's suffering and stigma), like Novartis/Famvir is doing in Australia, and get away with it. Some people won't even question their kindness and generosity!

All the best, Movingslowly, get better.

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Im thankful to have a loving partner during this whole mess. I still dread the day he is tested. This is a man I plan to spend my life with. Back to using condoms on the rare occassions we do have sex is boring. I shouldnt have to use condoms with the man I plan to grow old with. We should be able to have fun, spontaneous sex whenever we want. Nope, not us. Our sex life is handicapped by a painful virus.

One last thing. I was diagnosed with eczema recently. Starting to believe my immune system isnt acting normal. Constant obs and now eczema. Humm? Makes me wonder what I should do next in regards to figuring out whats wrong with my immune system. Could simply be stress. Or its trying to tell me something... Hate to show my face at the docs office so I avoid them at all cost.

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One last thing. I was diagnosed with eczema recently. Starting to believe my immune system isnt acting normal. Constant obs and now eczema. Humm? Makes me wonder what I should do next in regards to figuring out whats wrong with my immune system. Could simply be stress. Or its trying to tell me something... Hate to show my face at the docs office so I avoid them at all cost.

I know you have done a boatload of research, but I just want to be sure...have you heard of eczema herpeticum?

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I love what sheep we all are...

Excellent original post & great thread.

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Glaxo Settles Cases With U.S. for $3 Billion


The British drug company GlaxoSmithKline said Thursday that it had agreed to pay $3 billion to settle United States government civil and criminal investigations into its sales practices for numerous drugs.

The settlement would be the largest yet in a wave of federal cases against pharmaceutical companies accused of illegal marketing, surpassing the previous record of $2.3 billion paid by Pfizer in 2009. In recent years, drug companies have been prime targets of federal fraud investigations, which have recovered tens of billions of dollars for Medicaid and Medicare.

The cases against GlaxoSmithKline include illegal marketing of Avandia, a diabetes drug that was severely restricted last year after it was linked to heart risks. Federal prosecutors said the company had paid doctors and manipulated medical research to promote the drug.

GlaxoSmithKline had already set aside cash for the settlement, which analysts said would remove legal uncertainty. The company’s stock rose 2.96 percent Thursday, to $44.55, near its 52-week high, amid a broader market advance of about 2 percent.

“This is a significant step toward resolving difficult, long-standing matters which do not reflect the company that we are today,” Andrew Witty, chief executive of GlaxoSmithKline, said in a statement. “In recent years, we have fundamentally changed our procedures for compliance, marketing and selling in the U.S. to ensure that we operate with high standards of integrity and that we conduct our business openly and transparently.”

The agreement to settle its biggest federal cases should be completed next year, the company added in the statement. It said $3 billion would settle not only the Avandia case, but also a Justice Department investigation of its Medicaid pricing practices and a nationwide investigation led by the United States attorneys in Colorado and Massachusetts into the sales and marketing of nine of its drugs from 1997 to 2004.

GlaxoSmithKline did not specify how much money would resolve each case, nor the possibility of criminal findings and fines, saying the final settlement remained under negotiation. A Justice Department spokesman declined to comment.

GlaxoSmithKline, with a market value of more than $110 billion, had net profit of about $5 billion on sales of $43 billion in the year ending Sept. 30.

The company set aside $3.4 billion in January — eliminating its fourth-quarter profit — and $2.3 billion in July 2010 to resolve a variety of civil and criminal cases.

Critics of the settlements made with drug companies argued for stiffer penalties, including prison sentences for corporate officials.

Frances H. Miller, a Boston University law professor and health policy expert, said, “Although $3 billion is a very big number in terms of drug industry settlements, it’s not a very big number in relation to almost $50 billion in annual revenue for the world’s fourth-largest pharmaceutical company.”

Patrick Burns, spokesman for Taxpayers Against Fraud, an advocacy group for whistle-blowers, said, “Who at Glaxo is going to jail as a part of this settlement? Who in management is being excluded from doing future business with the U.S. government?”

Last year, the Justice Department accused a former vice president and associate general counsel of GlaxoSmithKline, Lauren C. Stevens, of obstruction of justice and making false statements. But she was acquitted of all six charges in May by a United States District Court judge, Roger W. Titus, in Maryland, who ruled that she had been advising the company in good faith.

Mr. Burns said the health care sector accounted for more than 80 percent of the $4 billion in overpayments recovered by the government in 2010 as a result of whistle-blower lawsuits and resulting fraud investigations by federal and state agencies.

“This is a well-worn path for big pharma,” said Les Funtleyder, health care strategist with the New York brokerage firm Miller Tabak.

“I know $3 billion sounds like an astronomical number,” he added, “but when you live in the world of worst-case scenarios, like investors do, $3 billion is a welcome relief. At least you have certainty.”

Brian Bourdot, an analyst at the investment bank Barclays Capital, called the settlement an important step but also noted that GlaxoSmithKline “remains involved in other legal disputes, including alleged violations of the Foreign Corrupt Practices Act.”

“We regard such disputes as an innate risk for large multinational pharmaceutical companies,” he wrote in a note to investors.

In a separate case last year, GlaxoSmithKline agreed to pay $750 million, including a $150 million criminal penalty, to resolve federal complaints about manufacturing quality at a plant in Cidra, P.R., since closed.

Mary Anne Rhyne, a spokeswoman for the company, said Thursday that it was still negotiating with the government over whether to include a corporate integrity agreement in that deal. The agreement could provide further penalties for other violations, though in manufacturing.

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Drug giants' big-money pitch exposed

Hughes G, Minchin L.

The Age 2003 Dec 13

Pharmaceutical companies are pouring millions into supposedly independent patient advocacy groups and the main medical organisations to help expand markets.They are also using sponsorship and educational grants to fund disease awareness campaigns, raising concerns of “disease mongering”.

Many groups have become largely or totally reliant on pharmaceutical industry money to keep going, prompting concerns that they are increasingly open to pressure from companies pushing their products.

A special investigation by The Age has found:

A nationwide awareness campaign run by the National Asthma Council was spearheaded by a cartoon dragon that was the registered trademark of a drug company and used to promote one individual asthma medication.

A leading drug company used a public relations company to set up an expert medical board to help persuade people that they needed to be vaccinated against hepatitis A and B.

The company was not interested in raising awareness about hepatitis C through the board because it did not sell a vaccine for it.

Treatment guidelines issued to Australian doctors for some diseases are being modelled on those developed by international groups entirely funded by pharmaceutical companies selling drugs for those same conditions.

Some groups funded by pharmaceutical companies are helping lobby the Federal Government to have new drugs added to the Pharmaceutical Benefits Scheme.

Groups have told The Age they know they are being indirectly used to help promote and market drugs, but say they have no option because of a lack of alternatives.

Australian Consumers Association health policy officer Martyn Goddard, a former member of the Federal Government’s Pharmaceutical Benefits Advisory Committee, said pharmaceutical companies had far too much influence over many consumer groups.

“Drug companies find it very easy to recruit consumer groups, and they do it very cheaply,” he said.

“There’s almost no such thing as clean money for most consumer organisations.”

The total amount of money flowing into patient groups and the main medical bodies in Australia is unclear.

The most recent figure available from the industry’s top body, Medicines Australia, shows that drug companies spent between $20 million and $25 million on philanthropic causes in 1999, which mostly covered payments to such groups.

Some groups are blocked from revealing details of the amounts they receive because of confidentiality agreements they have signed with drug companies. A briefing paper prepared for the international pharmaceutical industry by a public relations company, Hill and Knowlton, of Brussels, advised companies that they needed to consider patients as “a true target” for marketing, rather than doctors, and should build “relationships” with patient groups.

The briefing paper, prepared in December last year, detailed how the world’s second-largest drug company, GlaxoSmithKline, grew into the global leader in sales of respiratory medications by becoming the “number one partner” of patient groups and medical associations.

One medical specialist involved in an organisation totally sponsored by drug companies described the situation as like “dancing with the devil”.

There are no independent regulations covering drug company sponsorship deals and grants with patient groups in Australia.

Voluntary guidelines developed by Medicines Australia are now being independently reviewed by Swinburne University.

The review is being funded by Medicines Australia and individual drug companies.

The director of strategic relations at Medicines Australia, Steve Haynes, said the industry hoped the development of new guidelines would tackle concerns that small patient groups could be unfairly influenced by pharmaceutical companies.

But he denied that funding patient groups to run disease awareness campaigns was “disease mongering”.

“All you are trying to do with disease awareness is to get people to visit their doctor,” he said.

A South Australian general practitioner, Peter Mansfield, who runs the internationally renowned Healthy Skepticism website exposing pharmaceutical marketing techniques, said the hijacking of patient groups had become “a huge problem”.

“To be an advocate for people with those conditions, those organisations ought to be free to criticise the drug companies, just as they ought to be free to criticise doctors if we are not doing our jobs properly,” he said.

Trish Berger, the executive director of the Australian Herpes Management Forum, which relies totally on money from companies manufacturing herpes medications, believes the “vast majority” of patient groups in Australia are heavily or entirely dependent on drug company money.

Kristine Whorlow, the chief executive of the National Asthma Council, which used a drug company’s cartoon dragon to spearhead a national awareness campaign, said most sponsors now wanted a financial return on their money in the form of increased market share.

But the chairman of the Australian Medical Association’s federal therapeutics committee, Robyn Napier, said pharmaceutical companies’ sponsorship of consumer groups was not a problem, as long as specific drugs were not promoted.

“We can always pull one or two mistakes out and wave them in front of people, but in general terms I think the funding of public campaigns and educational activities by pharmaceutical companies, and that includes research, has been an incredible bonus to the community,” she said.

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Taking your medicine

Gary Hughes and Liz Minchin follow the big pharmaceutical money trail to reveal who is really behind the health advice we are getting.

Many of us with chronic health problems rely on advocacy groups and peak medical bodies for independent advice and support. But just how independent is that advice and are we being given the full picture? The Age has found that many advocacy groups are becoming hooked on sponsorship dollars from drug companies and these international corporations are in turn using them to promote their products in Australia's booming $5 billion drug market.



Click on the sponsorship link on the Australian Herpes Management Forum's website and everything seems to be upfront: "The AHMF is sponsored by GlaxoSmithKline Australia and Novartis Pharmaceuticals via open educational grants.

"GlaxoSmithKline is the founding sponsor of the Australian Herpes Management Forum and the major sponsor for 2003."

But there is something that visitors to the AHMF's website are not told: the group relies entirely on Australia's main herpes drug manufacturers for its existence, and has since it was set up in 1996.

Recently appointed AHMF executive director Trish Berger estimates that in the past financial year, GlaxoSmithKline has given the AHMF about $120,000, or some 80 per cent of its budget. The other 20 per cent comes from Novartis.

There is a strong bond between the AHMF and GlaxoSmithKline, for many years the only major manufacturer of herpes treatments in Australia.

Its constitution was written by Glaxo Wellcome's (now GlaxoSmithKline) Melbourne-based law firm, Deacons, and up until August this year the forum's administration was run by public relations firm Edelman, hired on the recommendation of a well known client - GlaxoSmithKline.

Not surprisingly, Edelman's media releases about herpes on behalf of the AHMF often bore a striking resemblance to those written by the same consultants for GlaxoSmithKline. Most of the herpes experts who have sat on the AHMF board have also worked with or advised GlaxoSmithKline and Novartis in recent years.

This year the AHMF board has begun to nudge its sponsors away to arm's length, moving to end Edelman's control of the organisation's secretariat. The organisation also created its first paid staff position, Ms Berger's. Her job includes seeking government and other non-pharmaceutical funding.

Ms Berger is keen to see the AHMF distance itself further from its sponsors, to avoid them "competing through us to get their time and profile enhanced".

AHMF chairman Professor Adrian Mindel concedes that the forum has been vulnerable to pressure from GlaxoSmithKline and Novartis because without their funding, "the Australian Herpes Management Forum would cease to exist tomorrow".

But Professor Mindel, who is also professor of sexual health medicine at Sydney University, director of Westmead Hospital's sexually transmitted infection research centre and on the editorial board of the international journal Herpes, insists that the forum and its board have remained independent of their benefactors.

"We're all professionals who are mostly academics in this area, and protecting our own reputations and independence is also terribly important... We think it is a quid pro quo (arrangement) and that we gain some benefit from that by promoting the science and improving the general health of the community. And they get the benefit in terms of their drug. And I'm not sure it's possible to completely separate the two."

In contrast, Professor Mindel says the global version of the AHMF, the International Herpes Management Forum, may be a different story.

He says although the IHMF "produces some very high quality material... whether it is completely unbiased I think is sometimes questionable" because of its close ties to drug companies.

The AHMF is one of 21 national organisations modelled on the IHMF, which was set up in 1993 to be "an authoritative voice on issues relating to the management of herpes infections". It was a worthy aim, with a wealthy backer.

GlaxoSmithKline has provided a steady income for the IHMF, funding its Herpes journal, sponsoring research awards and paying for the creation of herpes management guidelines intended for international adoption.

Today Glaxo is one of three pharmaceutical companies, along with 3M Pharmaceuticals and Novartis, keeping the IHMF afloat.

More than half of the current IHMF board have links to GlaxoSmithKline, such as leading trials of its herpes drugs, or in one case featuring in a Glaxo-sponsored television special.

In December 1999, the IHMF spawned a patient offshoot, the International Herpes Alliance, which also relied on GlaxoSmithKline funding to get started.

Novartis has since signed on as a sponsor too, and the companies' influence pervades the IHA website. Its "educational" material for journalists has been written by the "organisations (that) have made educational contributions to the International Herpes Alliance for the promotion of herpes awareness" - in other words, GlaxoSmithKline and Novartis.


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Glaxo-Affiliated Doctors to Dominate Upcoming NIH Neonatal Herpes Conference

Letter to NIH on Neonatal Herpes Panel

Integrity in Science Database

Health Groups, Prominent Physicians Call on NIH to Seek Balance and Prohibit Financial Conflicts of Interest on Guideline-Writing Panels

January 18, 2007

WASHINGTON—Next month five physicians will lead sessions at a National Institutes of Allergy and Infectious Diseases (NIAID) conference that was called to write clinical practice guidelines for preventing neonatal herpes. Four of those doctors have direct financial relationships with pharmaceutical giant GlaxoSmithKline—a company which stands to gain if the conference recommends broader testing of pregnant women for herpes, since Glaxo makes the antiviral drug Valtrex. Today more than 40 physicians and scientists and more than a dozen health organizations called on the National Institutes of Health (NIH) to seek balance when it convenes guideline-writing panels, and to ensure that all panelists are free from financial conflicts of interest like those of the four Glaxo-affiliated doctors.

A December 13 front-page article in The Wall Street Journal documented how Glaxo bankrolls continuing medical education sessions and physician talks aimed at promoting universal herpes screening for pregnant women. Remarkably, two of the doctors whose activities were exposed by the Journal will be among the five presenters at the upcoming February 20 NIH conference. The four presenters with ties to Glaxo are:

• Dr. Anna Wald of the University of Washington has received grants and research support for her work on herpes from Glaxo and Roche, and received honoraria from Novartis, all of whom make antiviral drugs for herpes;

• Dr. Zane Brown of the University of Washington gives “two to three lectures a week advocating universal herpes testing for pregnant women, earning $1,000 to $2,500 per talk,” and most of those sessions were financed by Glaxo grants to the CME providers, according to the Journal article;

• Dr. Laura Riley of Harvard Medical School is secretary/treasurer of the American Herpes Foundation, a “patient advocacy” non-profit run by a for-profit medical marketing firm; its board contains no patients and its $183,000 budget in 2004 was almost entirely funded by Glaxo and Roche; and

• Dr. Richard Whitley of the University of Alabama at Birmingham, who serves on the speakers bureaus for Glaxo and Novartis and serves on the board, and receives stock options and compensation from the start-up firm Fermavir, which is developing next-generation drugs aimed at the herpes family of viruses. Moreover, Dr. Whitley carried out these private sector activities while running NIAID’s Collaborative Antiviral Study Group.

Obstetricians and gynecologists are sharply divided over whether all pregnant women should be tested for herpes, given that neonatal transmission of herpes is relatively rare, occurring in as few as 200 or as many as 1,250 U.S. births each year, according to sources quoted in the Journal. Articles and letters questioning universal testing, which would almost surely lead to more women being prescribed Valtrex, have recently appeared in the Lancet and leading OB/GYN journals.

“Given the controversy surrounding the subject, we were surprised to see the lineup of speakers for the February 20 meeting… The lineup did not reflect the diversity of views on this subject, nor did the invitation reveal the conflicts of interest of virtually every invited presenter,” the health organizations and physicians wrote to Dr. Elias Zerhouni, director of the National Institutes of Health, Dr. Anthony Fauci, director of the NIAID, which is part of NIH, and other officials. Signatories included Lancet Editor-in-Chief Dr. Richard Horton, former New England Journal of Medicine editors Dr. Marcia Angell and Dr. Jerome P. Kassirer, the Center for Medical Consumers, Consumers Union, and the National Women’s Health Network.

This isn’t the first time that NIH has convened guideline-writing panels that had members with ties to companies that stand to lose or gain from the panels’ recommendations, according to the Center for Science in the Public Interest, which organized the letter to NIH. Panels having to do with managing cholesterol, hypertension, and HIV/AIDS have all had large numbers of industry-funded researchers serving on them.

“NIH shouldn’t let drug company-affiliated doctors write the rules, and it shouldn’t stack the deck to make it look like there is medical consensus on something when there’s not,” said Merrill Goozner, director of the Integrity in Science Project at CSPI, which maintains a database of industry-funded scientists.

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I kind of disagree with the premise of INVENTED stigma

The idea of the herpes stigma being created reminds me of AIDS denialism. Basically a way for sufferers to deny or minimize their problem by convincing themselves that they are completely normal.

HSV2 was a health and public concern before acyclovir came out, It was a contagious virus that caused pain and sores on genitals frequently. Not fun and a good reason to make medicine to treat it. But there was simply nothing to treat it so there wasn't much doctors could do before Acyclovir. But herpes isn't life threatening so there was no widespread panic.

Acyclovir was created because there was a need for it. I don't believe it this "Invented Stigma" conspiracy.

Just my two cents.

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SCG, be welcome to disagree. You may have a point. I don't think there really is any conspiracy here. It's all very clear actually. Just facts, and everybody can make up their own mind.

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Natasha Posner wrote a magnificent book about herpes, "Herpes Simplex - Experience of Illness", that has several chapters describing how the stigma began, from a UK perspective. Its highly educational and informative otherwise as well. I'll try to get some excerpts from my Kindle edition to put here, once I find out how to do it. It can be bought at Amazon. Highly recommended!


It can also be read, partially, in Google Books:

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Natasha Posner wrote a magnificent book about herpes, "Herpes Simplex - Experience of Illness", that has several chapters describing how the stigma began, from a UK perspective. Its highly educational and informative otherwise as well. I'll try to get some excerpts from my Kindle edition to put here, once I find out how to do it. It can be bought at Amazon. Highly recommended!

It can also be read, partially, in Google Books:

I skimmed it online briefly. Looks like there is some great stuff in this book!!! :D

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I remember my doctor was trying to sell me Valtrex. Not the generic acyclovir, which works just as well. It was Valtrex, because he was getting a cut.

The people who put "herpes" in horror movie-type script on the front page of Time in 1982 also got a whole lot of money for the shock value.

Common theme here? I think so.

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The making of `herpes’ is a story of how a hidden, intermittent, self-limiting condition (`genital herpes’) became stigmatized, and a very common, accepted, and also minor, self-limiting condition (`cold sores’) became dangerous. In discussing how `herpes’ is `partly a media-induced disease’, Karpf saw it as a reflection of a moral panic conveying fears about sexual behaviour (in parallel with the treatment of cervical cancer and AIDS), `with the media acting mainly as a loudhailer’ (Karpf, 1988, pp. 142, 139). The nature of the condition has allowed the media to purvey myths which have caused considerable alarm and distress, creating a highly negative and distorted response which has then been used to encourage pharmaceutical intervention. The availability of such intervention in the 1980s underlay these developments, as the medicine sought patients and people sought relief from doctors made more aware of psychosocial concerns. It can thus be seen how media myths, meanings and medicines have interacted to produce the persistent phenomenon of `herpes’.

"Science as Culture, Volume 9, Number 4, 2000"


The "Herpes" phenomenon:

Media Myths, Meanings

and Medicines


Herpes simplex is a common infection that by middle age over 90% of adults in the population have acquired, often early in life, and mostly without being aware of it. It may remain dormant, or it may produce symptoms intermittently or occasionally. Typically symptoms are redness and a small crop of sores at the site of infection, most commonly around the mouth (`cold sores’), or on the genitalia.

`Herpes’, in a literal sense, does not exist, except as a generic label for a group of viral infections which include herpes simplex, herpes zoster (shingles), varicella zoster (chicken pox), cytomegalovirus (CMV), Epstein-Barr (glandular fever), and human herpes 6.

The phenomenon of `herpes’, however, has an existence as a largely mythical construct used as a stigmatized label to refer to the condition of the small percentage of the infected population who knowingly experience symptom recurrences of herpes simplex. While these symptoms are self-limiting and usually not experienced as an illness (Posner, 1998, p. 82), the condition may nonetheless cause great distress because of the stigmatized meanings that it has acquired. Herpes zoster produces a larger and extremely painful crop of similar sores, and these symptoms may not recede so readily; however, the infection is not stigmatized. The distress caused by this latter condition, which is usually suffered by older age groups and is not sexually transmitted, in contrast to herpes simplex, is more physical than psychosocial. The acquisition of the chicken pox infection earlier in life predisposes one to the possibility that the infection can be triggered in later years to recur in the form of herpes zoster.

This article will examine the elements which, in alchemic mixture, have produced the remarkably persistent sociocultural phenomenon of `herpes’: the hidden, silent and endemic nature of the condition, the unpredictability of symptom recurrences, and its incurability, infectivity and sexual transmissibility, distorted by the dramatic nature of media coverage; with the pharmaceutical industry’s agenda providing the developing ingredient for the brew.

The enormous volume of media coverage of `herpes’ over the past two decades has both reflected and played a very significant part in creating the phenomenon. If we look to the experts consulted by the media to tell us what it is, we are plunged immediately into the middle of contrasting presentations. Dr Adrian Mindel, an acknowledged medical expert on herpes simplex infection (and at that time a GUM consultant at London’s Middlesex Hospital), told The Independent (21 July 1987):

For the majority of people herpes is a minor viral complaint;

it is nothing more than an occasional nuisance.

Urologist Peter Gross spoke admiringly to Time magazine (2 August

1982) about the ability of herpes viruses to secrete themselves in the human bodily system:

If you were doing a science-fiction movie, you couldn’t invent something better than herpes.

Levenson and colleagues (1987) wrote that:

Genital herpes simplex infection is a major personal and public health problem affecting millions of patients.

The Herpes Association (now renamed as the Herpes Viruses Association) represented a body of experiential expertise and advocated an unproblematized view of the condition:

Herpes simplex itself is a natural part and fact of life, one we can live in harmony with if we can accept it in true perspective (Herpes Association, 1993a, p. 10).

Thus the nature and implications of the condition could be portrayed in different ways, depending on the agenda of the commentator.


The media presentation of herpes simplex in the early 1980s was described in an editorial in the British Medical Journal as `sensational and inaccurate’ (Adler and Mindel, 1993). The hype managed to create a monster out of a common and minor condition which had quietly co-existed with humans for a very long time. Cosmopolitan (July 1982) announced:

Today this viral infection has established itself as an uncontrollable epidemic.

The Daily Mail (28 July 1982) under the headline `Nature’s new threat to women’ emphasized the pervasiveness of the threat of `a new and as yet incurable disease, spread through sex contact’, by suggesting that although you might be an ordinary and respectable woman in a typical role, you only had to step outside the bounds of sexual propriety once to join the ranks of `victims’:

Nor is the problem confined as is commonly supposed to women who make a habit of `sleeping around’. Herpes is now so widespread that victims are often housewives, teachers, and secretaries who may have been guilty of only one act of sexual indiscretion.

The threat of such punishment was accompanied by other scary warnings:

In women, recurrent attacks are thought to increase the risk of cervical cancer between five and eightfold (Observer, 2 May 1982).

Women who plan to have children face particularly frightening risks. Babies can pick up the virus in the birth canal if the mother is suffering an outbreak at the time of delivery. The virus quickly spreads through the infants’ bodies, killing more than half of them and leaving most of the survivors permanently brain-damaged (Cosmopolitan , July 1982).

So pervasive and dangerous was the infection, it was suggested that there was the possibility of picking it up from polluted towels and cups and transferring it from one part of the body to another, to self-inoculate for example from a `cold sore’ on the face to one’s own genitals (Cosmopolitan , January 1984). Then there were the psycho- sexual and emotional sequelae:

The devastating emotional and psychological anguish of possessing an incurable sexually transmitted disease like herpes the blow to a satisfactory sex life and to sexual self-esteem may be shattering (Observer, 2 May 1982).

The condition was presented as a new epidemic sweeping through the ranks of the sexually active, an incurable infection with the potential to trigger cervical cancer in women, kill babies and leave a person’s life in ruins. All that was new, however, was the attention given to the condition, particularly if it occurred on the genitals; but the condition was neither new nor could it constitute an epidemic since it was already endemic.

The infection is incurable in the same sense as other viral infections, but it is self-limiting in a body with a normal immune system and symptoms resolve without medical intervention. It is caught from skin to skin contact not from towels or cups, and the theoretical possibility of transference from one part of the body to another only exists during a primary episode of symptoms before antibodies have developed. A check with evidence accumulated by The Herpes Association from people living with regular recurrences of the condition would have confirmed this.

The scare stories affecting women’s health were particularly emotive. Though it was suggested at one time that the herpes simplex virus (HSV) might be implicated in the development of cervical cancer, it was later discovered that certain types of another common infection, the human papilloma virus (HPV) which causes genital warts, were the triggers. Like some other viral infections (for instance, cytomegalovirus), the acquisition of HSV in the first trimester of pregnancy may be a threat to the normal development of the foetus. However, if the woman already has herpes simplex infection, then the baby would normally acquire initial protection from its mother’s antibodies. Nonetheless, many caesarean sections were carried out simply because the mother was known to have pre-existing genital HSV infection, prior to a change in obstetric policy.1

Only in a situation where the mother suffers a primary occurrence of HSV symptoms on the genitalia around the time of birth and is thus shedding a large amount of virus and has not yet developed antibodies, is the newborn at obvious risk. However, an infant without antibodies to HSV is as much at risk from a relative’s kiss, or a nurse’s herpetic whitlow on the finger. A cursory look at the prevalence of genital herpes simplex in contrast to the very small numbers of neonatal herpes simplex infections, would have raised doubts about the nature of the risk because of the large numbers of babies being born vaginally and without infection to women already infected and carrying antibodies to HSV (Whitley, 1993).

Though herpes simplex infection is rarely any significant threat to physical health, it has certainly caused immense distress because of the stigma attached to the condition.

When the doctor diagnosed genital herpes I felt the carpet had been pulled from beneath me and my life was over. I desper- ately hoped it was all a terrible mistake (Sphere, 9(2), p. 16, quoted in Posner, 1998, p. 30).

I was naturally devastated when first diagnosed and mentally went through some very difficult weeks and even had thoughts of suicide (Sphere, 9(2), p. 12, quoted in Posner,1998, p. 31).

So the media’s presentation of a life in ruins reflected the reality for many people who had not had the information, support or time to counteract the impact of stigmatized meanings of this condition.

A drama was being played out here surely? The humdrum nature of a medically minor condition, that most people are unaware they have acquired and certainly do not suffer from in any way, and which gets better by itself if it does produce symptoms, was being made to carry a heavy burden of sociocultural meanings. Cosmopolitan and Time magazine told their readers how they would feel if they acquired this `New Sexual Leprosy’: ` most will suffer shame, guilt and even depression, and a few will become suicidal’ (Time, 28 July 1980); `they feel tainted, fearful that no one will ever want to love them’ (Cosmopolitan , July 1982).

The significance heaped on this condition was enough to take it to the top of the league of feared sexually transmitted infections, and, in itself, irrespective of the nature of any physical manifestations, to cause psychological and psychosexual morbidity. This burden was reflected in the term, the `herpes syndrome’ `a pattern of anguish and isolation that may play havoc with a person’s self-image and social life for years’ (Luby and Gillespie, 1981) and its impact duly measured by psychologists among those who, in their distress, had turned to a self-help organization in the USA. Clearly, this group represented one end of a continuum of distress and this type of response is not an inevitable reaction to having the condition. A later study in the UK of GUM clinic patients and Herpes Association members with genital HSV infection found that the condition had not adversely affected the majority of subjects’ sex lives and concluded that

There was no evidence that, for most subjects, having herpes had influenced the way they saw themselves, their ability to relate to others in intimate situations or their feelings of attractiveness (Brookes et al., 1993).

A good indication of the sociocultural significance of herpes simplex can be gained from the analysis of its dramatic role in at least two films from the USA shown on television. How many other STDs have been given such a key part in popular dramas? Chlamydia has a promising-sounding name, and has indeed been featured in Neighbours, and syphilis has certainly been in the background of several well-known stories, but neither had a key role in the unfolding of the drama itself.

Intimate Agony, shown on Channel 4 in 1985, revolves around the implications of the spread of HSV amongst the residents of an American offshore island resort. A young women declares `my life is over’ when she learns her diagnosis from a clinic doctor. When she tells her best friend, her friend recoils from her in horror and refuses even to touch an item of her friend’s clothing. A husband passes the virus to his pregnant wife who gives birth prematurely to a brain-damaged baby who dies. A flirtatious tennis coach has his self-confidence destroyed and begins to avoid sexual encounters after contracting the infection. In the midst of all this negativity, Acyclovir, an antiviral agent developed by the Wellcome pharmaceutical company, was mentioned as a treatment early in the film, one of the doctors involved was sympathetic and supportive, and the ending was focussed on the meeting of a self-help group, but the film overall dwelt on the most negative possible implications of HSV and was likely to have perpetuated existing myths.

In August 1993 a two-part drama by Scott Turow with the title The Burden of Proof was shown on BBC1. The film was about a defence lawyer’s attempt to unravel the mystery of his wife’s suicide with which the film begins. One of the secrets he uncovers is that his wife had recurring genital symptoms of HSV, that when they `got bad’ she had said `I’m really not sure I can carry on’ and had talked of suicide. The condition was referred to in the film as `a disease’, `an illness’, `the mortal hazards of a STD’ and `repulsive’. She was reported as saying she was being treated for something `unmentionable’. Acyclovir however, was mentioned. The condition was presented in the film in a highly stigmatized way and as being implicated in the wife’s suicide.

The Wellcome pharmaceutical company developed Acyclovir in the hope of an effective intervention against HIV, then found it reduced the symptoms of HSV infection and began to market it in tablet form as a treatment. `Herpes’ also existed in parallel with HIV/AIDS in its societal role as a sexual scourge. In the early 1980s, `herpes’ was attributed a significant role in bringing about a fundamental change in sexual mores. Referred to as `this perplexing side-effect of the sexual revolution’ (Observer, 2 May 1982), it was suggested that `The herpes counterrevolution may be ushering a reluctant, grudging chastity back into fashion’ (Time, 2 August 1982). `Does this contagious, recurrent disease spell the end of the permissive society?’ The Reader’s Digest asked in 1983.

Chlamydia and wart (HPV) infection, with their respective implications for fertility and the development of neoplastic cervical cells, could also be presented as equally, if not more worrying `side effects’ of increased sexual permissiveness. The Public Health Laboratory Service Communicable Disease reports for England and Wales in the 1980s indicated a far more dramatic increase in genital warts and chlamydia than in genital symptoms of herpes simplex (Catchpole, 1992). In public health terms, the significance of HSV is that symptomatic episodes may result in small ulcers on the genitalia and while the ulcers heal there is an increased risk of the transmission of other viruses with more significant medical implications (HIV, Hepatitis) in unprotected sexual activity. In the Third World in particular, this has enormous public health implications.


Herpes simplex is a condition that is hidden in several ways. In the first place, once the virus has entered the body, it will secrete itself in the sacral or trigeminal nerve ganglion (the nerve centers in the buttocks and head respectively) out of easy reach of the body’s defenses. In the second place, because the majority of people with the infection seldom, if ever, experience significant symptoms, they do not know that they have the infection. Thirdly, where symptoms are genital rather than facial, they are hidden from general view, and the condition only comes to light if the person chooses to disclose it:

I just felt I had this terrible secret and I didn’t want to be walking about with a terrible secret (quoted in Posner, 1998, p. 69).

The hidden, silent and endemic nature of herpes simplex infection was made more evident by seroepidemiologic studies of STDs in different sections of the population, particularly in the USA. Serological surveys investigate the proportion of the population who have been exposed to an infection by checking their antibody status. There is considerable cross-reactivity between HSV-1 and HSV-2 antibodies, and it is only relatively recently that accurate serotyping to distinguish the two types has been possible with reliable type- specific serological assays such as the Western blot and immuno-dot. These serosurveys confirmed that HSV-1 was indeed extremely prevalent with over 90% of the population having acquired the infection. Infection with HSV-1 provides some but not complete immunity to infection with HSV-2 (Mertz, 1993; Corey, 1994).

As clinical diagnosis of genital herpes simplex is not normally accompanied by accurate serotyping, the description `genital’ refers to the site of infection rather than the type of HSV infection, which could be either HSV-1 or HSV-2. Between 20 and 60% of new genital infections are due to HSV-1 (Patel et al., 1997). Because of its preference for the orofacial region, however, this type of herpes simplex is less likely to recur on the genitalia.

The prevalence of both versions of the infection increases with age, and varies with gender, race, income and educational levels and number of sexual partners, according to the National Health And Nutrition Examination Survey (NHANES Survey, Johnson et al., 1989) and the AMEN study (Siegel et al., 1992) in the USA, and the study by Ades et al. (1989) of women attending an antenatal clinic in London in 1980/1. The rates of HSV-2 infection were found in the USA to vary from 22 to 46% according to the population sampled (Breinig et al., 1990; Koutsky et al., 1992).

In Australian STD clinic populations, the rate of infection has been found to be 40% (Cunningham et al., 1993) and 65% (Bassett et al., 1994). In the Ades study, the seroprevalence of HSV-2 averaged 19% for women over 35 years and varied considerably according to race, the highest rate at that time being 37% among black African women (Ades et al., 1989).


Herpes simplex shares the characteristics of being incurable, intermittently infectious and sexually transmissible with other viruses (HPV wart virus, Hepatitis B and C, HIV), which have more significant implications for a person’s health but, except for HIV, have been less stigmatized. Herpes simplex may be highly contagious when symptoms are present on the skin; and symptoms may last a few days to a week. At other times, that is, when the virus is dormant in the nerve ganglion, which may be for months, years or the rest of the person’s life, it is not infectious at all. The degree to which the condition is transmissible during a symptomatic episode will depend on the `viral load’ present on the outside of the body, and this is influenced by many factors such as the length of time the person has had the infection, and the number of days the symptoms have been present.

After a primary episode of symptoms indicative of infection with HSV, the virus remains in the body, traveling up the nerve route to the ganglion, usually either the sacral (lower half of the body) or the trigeminal ganglion (head and face), where it will live harmlessly in the nerve cells but cannot be reached by the immune system. It will be in a dormant state unless reactivated, when the virus will travel down the nerve again to produce symptoms on the skin. Such recurrences are nearly always shorter and less severe than the primary episode. The natural history of the condition in a particular person is extremely variable and unpredictable. Just as many people infected with HSV-1 as children never get obvious symptoms, so some people will acquire HSV-2 without knowing it; others will not have another recurrence of symptoms after the primary episode. With both types, some people will have symptomatic recurrences periodically, and an unfortunate few will have them regularly.

Various things are known to trigger a recurrence of symptoms in some people: sunlight, tiredness, illness, stress, and a diet high in L-arginine (found in nuts and chocolate). The unpredictability of recurrences has spawned a mass of psychological investigations attempting to explain and predict recurrences from psychometric and social characteristics. Essentially however, it remains unclear whether such factors as lack of social support, low self-esteem or depression are causal factors, mediators or consequences of recurrences. This uncontrollability and the tendency for symptoms to occur `at the wrong time’, a large ugly cold sore on the day of an important presentation, possibly in association with the stress of the event and lack of sleep, has encouraged the attribution of malevolent characteristics to this infection. Time (2 August 1982) suggested that it had a mind of its own choosing to play havoc with its victims’ lives, leaving them at its mercy. Writing about the obscurity of the mechanisms which provoke recurrences of symptoms, Collee (1994) suggested that:

At times the virus seems almost wilfully malicious like having a tedious relation who unerringly chooses the most inappropriate moments to come and stay.

Some people who get distinct symptoms of HSV infection, ex- perience prodromal symptoms of a recurrence in the form of pain or itching prior to evidence on the skin. This allows them to avoid situations in which they might pass on the infection, or to cover the sores with a plaster if this is possible. It has been suggested that most genital infections are passed on inadvertently by people who do not realize that they have herpes simplex; the infection is `subclinical’, atypical and/or asymptomatic (Hook et al., 1992; Corey, 1994). The proportion of the population in these categories is the subject of considerable debate.

The burden of the stigma accompanying `genital’ herpes becomes most clear when we consider the position of a person about to enter a new sexual intimacy, who has symptoms once or twice a year and is considering when or whether to disclose this. Because of the attached stigma, the risk is that the contagion is seen as infecting the moral status of the person who then becomes undesirable. In this situation, there is a distinct discrimination in terms of body parts. Individuals suffering from `cold sores’ on the lips, may feel upset at the sight or the feel of the symptom, but they do not contemplate suicide, socially isolate themselves or fear that they will never find a sexual partner who accepts them; nor do they agonize about how to broach the subject with a potential sexual partner. Yet this very common expression of HSV infection is just as contagious, (and has the potential to be transmitted during sexual activity and result in `genital’ herpes in someone who has not been in contact with the virus before). However, we do not expect to be warned `I had a cold sore last Summer’ before being kissed under the mistletoe.

The essence of stigma is that it carries implications both about the nature of the condition and about the nature of the person with the condition: the condition is shameful and an individual known to have it, judged essentially imperfect with a `spoiled identity’ (Goffman, 1963). The idea of moral contagion was expressed in references to being a leper among members of a self-help group (UK Herpes Association) surveyed about their experiences of living with herpes simplex and contact with the organization (Posner, 1988, pp. 67, 51):

Although I read many encouraging articles about Sex after Herpes, I buried myself away for six months, really did feel like a leper and didn’t want to mix socially for I felt that there was no point as there was something so badly wrong with me.

Reducing the stress of feeling like a leper. Helping myself feel normal and acceptable.

Part of the work of this organization was to counteract the highly dramatized and negative image of the condition as a sexual scourge presented in the media. Contact with the organization often produced a revision of views:

Not the great evil the media would have you believe, just a damned inconvenience

A minor inconvenience which only visits occasionally, not a permanent af¯iction which never leaves

Merely `cold sores’ wherever it appears and is a minor skin condition rather than a syphilitic plague (Posner, 1998, p. 49).

This reframing resulted in moral restoration and a more acceptable self-image.


Herpes simplex has been fought over in ideological terms, particularly in relation to its (medical and social) significance, with implications for how those who clearly have the condition are viewed, how risks of transmission should be treated, and the need or otherwise of medical intervention. As far as GPs were concerned, herpes simplex had come from being a condition that doctors tended to pay little attention to, since it was common, minor and self-limiting, to one which was presented as the ruination of a person’s life, the cause of suicidal feelings and much distress. Thus it came to require intervention, symptom alleviation, symptom suppression, counselling or at least reassurance. The psychosocial themes of patient-centred medicine and a pharmaceutical company’s agenda, had coincided with apparent concern for the patient’s well-being as a person.

The media hype and the idea of a `herpes syndrome’ were reflected in Wellcome advertisements which portrayed their product Zovirax (trade name for Acyclovir) as rescuing people with recurrent genital symptoms of HSV from their plight. For instance, adverts in the medical press heralding the greater freedom of doctors in Australia to prescribe Zovirax tablets from the beginning of December 1993 showed a photograph of a woman dancing in the air, with the words `doctor frees unfairly imprisoned woman’ in large letters over the picture. It continued:

For thousands of Australians, recurrent genital herpes can be a cruel sentence of pain and distress. The only effective way to free these patients and give back control of their lives is with Zovirax (acyclovir). As a doctor, you can offer this freedom.

In another advertisement announcing these more relaxed prescribing regulations for Zovirax, the caption described negative reaction to the condition as reflected in `the herpes syndrome’:

Recurrent genital herpes can cause profound psychological, emotional and sexual dysfunction. From the patient’s point of view it is incurable and stigmatising.

By the early 1990s, the Herpes Association (HA) was being regularly consulted by journalists when they wrote articles about herpes simplex. The Association was able to have some influence on the information in the lay press and to begin to get across the message that the presentation of herpes simplex in the media had been seriously distorted and had adversely affected people’s experience of the condition. This re-presentation of herpes simplex drew on the accumulated experiential evidence of members and thousands of contacts through the organization’s helpline. Thus, while the medical profession was being persuaded by pharmaceutical promotions that people suffering recurrent genital HSV symptoms were deserving of sympathy and medical help because of the impact of the condition, the HA in the UK was effectively countering the earlier stigmatized media presentation of `genital’ herpes, getting across the message that the condition was not medically serious and suggesting that the effect on a person’s life need be minimal.

The ideological war was then opened on another front in the form of `The Cold Sore Health Education Campaign’, which was organized by The Rowland Company, a public relations company acting for Wellcome pharmaceuticals. Zovirax cream had become available over the counter (without a prescription) with an enormous potential market if people experiencing cold sores around the mouth could be persuaded to do something about them. A `health education campaign’ told the public that `cold sores’ were highly contagious and just as dangerous as the genital version of herpes simplex; however, treatment was available. An article in the Evening Standard (by Lois Rogers, 30 October 1991) at the end of October 1991 announced the Cold Sore Health Education Campaign in language reminiscent of the articles on genital symptoms of herpes simplex in the early 1980s:

Alarm over Aids has masked a massive explosion in cases of the cold sore virus herpes which can cause blindness and even death, says a report today. Babies infected at birth are likely to die or suffer serious handicap, says the report which launches a herpes education campaign. Once the virus has attacked, cold sores recur for life. In some cases sufferers can pass on the virus even when they do not have an active cold sore.

A few months later (February 1992) the magazine Health and Fitness carried an article by Jon Menon presenting herpes simplex as an ever-present threat:

Cold sores are contagious. Usually appearing around the mouth and nose, they can spread to other parts of the body and to other people through touching, kissing, oral sex, and sharing cups, cutlery and towels, in effect anybody can pass it on to anyone, anywhere at any age, from mouth to hands, mouth to genitals, hands to eyes.

The Cold Sore Health Education Campaign was named at the end of the article for further information with the telephone number of The Rowland Company. This campaign was the subject of two complaints to the Prescription Medicines Code of Practice Authority which ruled on Wellcome’s breach of the code on advertising prescription medicine to the general public.

A leaflet produced by the Rowland Company with support from the Wellcome Foundation, was headed `Cold sores?’ and carried a picture of a mouth pinned open with stick figures attacking the lips with several implements including an axe. Underneath the picture was the caption `consult your doctor or dentist’. Why people were to consult a health practitioner was not made clear, and if the millions of people who get facial symptoms of HSV infection occasionally, were to do so en masse there would much wasted practitioner and patient time. The impression both from the picture and the caption was somewhat alarmist. Included in a list of `Do’s and don’ts’ was the injunction `Do not kiss people, especially children’; and under the heading `As extra precautions’: `Do not share your eating and drinking utensils, the same towels or flannels with partners or family’.

This `health education’ campaign was ignoring the epidemiological evidence that the condition has already been acquired by most adults who will thus have immunity, the medical and experiential evidence that self-inoculation is only possible during the initial episode, and that towels and crockery are not the route of infection. This evidence had already been presented in articles in the media attempting to correct earlier misconceptions.2

A key point in this ideological battle was a press briefing held at the Royal Society of Medicine in London on 16 June 1993 by the Herpes Association. This was presaged by an article in The Times by Jeremy Laurance on 10 June 1993 announcing that the Association was about to publish a report `showing how misrepresentation of the effects of herpes has increased the suffering of those affected by it’. At the press briefing, the Herpes Association launched their booklet `Herpes Simplex A Guide’ drawing on the accumulation of evidence from the Association’s members and endorsed by the Society of Health Advisers (GU Medicine), and presented a report with the title `The Incidence of Herpes Simplex - Where is the Epidemic?’.

The presentations from specialists, GPs and members of the Herpes Association, were accompanied by a number of handouts, including a forthcoming article in the Association’s newsletter summing up the evidence about Acyclovir (Zovirax) based on the review in The Drug and Therapeutics B ulletin (Anon, 1992), which concluded that the drug should be limited to those conditions where it is of proven value, namely in the treatment of a primary genital occurrence of HSV, ocular herpes simplex, herpes zoster (shingles), and as suppressive therapy for people with frequent genital symptoms. In other words, it was not recommended for the treatment of facial symptoms nor for the treatment of episodes of recurrent genital symptoms because it had been found to be relatively ineffective and was expensive.

Shortly after this press briefing, the Sunday Times (20 June 1993) carried an article by Neville Hodgkinson headed `Drug firm accused of herpes scare tactics’. It began:

A charity that seeks to improve understanding and treatment of herpes, the common virus infection, has accused a giant pharmaceutical company of scaremongering in a drive to promote the only drug licensed for use against the virus.

The article explained the Herpes Association’s objections to literature distributed by Wellcome, which it felt perpetuated a negative image of the condition, and continued,

The arrival of AIDS put herpes in the shade for a while, and the Association felt a more realistic picture of herpes was beginning to be established , now the company has launched a `Wellcome Patient Care Initiative’ targetting genital herpes, which it says can have `a devastating effect on people’s lives, causing deep and lasting damage to relationships’. The Association, and doctors supporting it, say that Wellcome’s approach is contributing to the condition the drug is supposed to treat.

This article ended with an account of Wellcome’s rejection of the criticisms in which a spokesperson for the company had argued that `in its anxiety to de-stigmatize herpes the Association was not giving sufficient weight to cases in which suffering does occur’, and that

There is a significant minority of patients who seek advice and treatment. It is important that patients are made aware that the condition can be treated, certainly for someone suffering recurrent attacks of genital herpes and about 2.5m people seek advice and treatment for (cold sores) from a pharmacist every year.

The opposing armies in the ideological battle over herpes simplex took up positions which had different implications, but both positions had potentially problematic aspects. Overstating the position that herpes simplex is not nearly as dreadful a condition as it has been portrayed, carries with it the possible corollary that people suffering from its symptoms and asking for relief, will be viewed as not really needing medical help, nor deserving sympathy and understanding. Overstating the other position carries with it the danger of increasing the possibility of suffering for those who are aware that they have the condition, by changing their conception of it to a more anxiety-provoking one.


As a biological phenomenon herpes simplex is an extremely successful virus, known to have cohabited with humans since Greek and Roman times, infecting the majority of the population, hiding from

the immune system’s attention, but very seldom causing sufficient physical damage to provoke a medical war to try to eliminate it. The sociocultural phenomenon is also remarkably persistent, fuelled undoubtedly by vested interests, and the attraction of dramatic rather than reassuring headlines.

In more recent media coverage, headlines in The Sunday Times (2November 1997) and The Guardian (25 November 1997) respectively, read `Herpes epidemic feared as new cases reach high’ and`Doctors pledge to fight “silent epidemic” of undiagnosed herpes which they say is sweeping the West’. The Sunday Times article began,

Britain is facing a new epidemic of a sexual disease: one in five of the population could be infected by the incurable virus

(italics added).

The Guardian article also used the `incurable’ and warned, Although it is not a fatal disease like Aids, genital herpes is apainful, chronic condition that carries a social stigma and can ruin relationships.

The three page press release issued by the International Herpes Management Forum (IHMF) from which the above statement was taken, continued `and is a life-long infection’. Private Eye’s commentary on the annual meeting of the IHMF in Cannes, which occasioned this press release, began,

It’s not been a great month for Glaxo Wellcome with the withdrawal of troglitazone, its new diabetes drug, due to liver damage. So thank heavens for the International Herpes Management Forum (IHMF), `an independent group of international physicians’ (supported by Glaxo Wellcome) which was set up in 1993 `to improve awareness and management of herpes virus infections’. Glaxo Wellcome has a big stake in herpes with the antiviral drugs aciclovir and valaciclovir.3

Again there was nothing new about the prevalence of the infection. Nor had notifications of new clinic cases `reached a new high’ according to the Public Health Laboratory Service report on `New cases seen at genitourinary medicine clinics: England 1996’. New cases of HSV infection remained a small proportion (3%) of the total workload of the clinics; cases of HPV (genital warts) accounting for over three times as many cases in 1996.

The information given to the media was an attempt to increase the number of mild and subclinical cases of HSV infection which were diagnosed and treated. While antiviral tablets can provide relief for the small proportion of people with the infection who have frequent and troublesome symptoms, they do not completely suppress the infectivity of the virus, the large majority are untroubled and thus do not seek treatment.

One response to this situation is to try to get this larger, untroubled proportion of the population with HSV to pay attention to mild symptoms and seek treatment by generating alarm about the condition. Another way to get the majority troubled about their hidden infection, would be to reveal their serological status. Screening the whole population would now be possible, would generate considerable concern, and would appear to be unjustified in terms of the cost/benefit ratio. The development of an effective vaccine however, would be a useful form of protection for the uninfected partners of individuals diagnosed with HSV-2, and some others at particular risk. For the general population, protection against greater threats to their health would have a higher priority.

Loaded with negative meaning, `herpes’ amply illustrates how a condition’s portrayal in the public domain can make all the difference to thinking about and thus experience of it, over and above, and irrespective of the experience of any physical symptoms. This article has analysed aspects of the construction of this meaning at the societal rather than the individual level. The condition exemplifies the need for a model which takes account of the interaction between individual experience and social context in any attempt to explain the range of responses (Bury, 1991; Posner, 1998, p. 90). It also illustrates how `the body’ needs to be integrated into accounts of the experience of chronic conditions in a way which acknowledges biological as well as social realities and the centrality of the body in social processes (Kelly and Field, 1996). This is particularly the case where the condition is experienced as a handicap in relationships (Posner, 1998, pp. 86±90). But more generally, the social meaning of this condition can be thought of as `embodied’ in the sense of mediating the experience of it - experience that can be anything from unawareness to acute distress. The competing prescriptions and ideological stances relating to `herpes’ in the social world may be refleected in the differing perceptions of individuals who may have the same physical symptoms. Investigating the influence of stress inducing perceptions takes one into the realm of psychoneuroim- munology and a reflexivity within the embodied world.

The making of `herpes’ is a story of how a hidden, intermittent, self-limiting condition (`genital herpes’) became stigmatized, and a very common, accepted, and also minor, self-limiting condition (`cold sores’) became dangerous. In discussing how `herpes’ is `partly a media-induced disease’, Karpf saw it as a reflection of a moral panic conveying fears about sexual behaviour (in parallel with the treatment of cervical cancer and AIDS), `with the media acting mainly as a loudhailer’ (Karpf, 1988, pp. 142, 139). The nature of the condition has allowed the media to purvey myths which have caused considerable alarm and distress, creating a highly negative and distorted response which has then been used to encourage pharmaceutical intervention. The availability of such intervention in the 1980s underlay these developments, as the medicine sought patients and people sought relief from doctors made more aware of psychosocial concerns. It can thus be seen how media myths, meanings and medicines have interacted to produce the persistent phenomenon of `herpes’.


I would like to thank the reviewers for their helpful suggestions and

comments which contributed to the development of this paper.


1. In the early 1980s in the USA, management of pregnant women with a history of genital HSV symptoms included weekly cervical cultures, followed by an automatic Caesarean section delivery if the culture was positive. This protocol has since been abandoned by the American College of Obstetricians and Gynecologists and new guidelines substituted in 1988, because the previous strategy did not prevent the neonatal HSV infections which occurred and Caesarean section delivery carries a risk to the mother. While Caesarean sections for mothers who are known to have genital symptoms of HSV are no longer routine, there is still some degree of controversy about the most appropriate management of a situation where there is a recurrence of symptoms at the time of delivery. A very small but serious risk to the baby has to be weighed up against the risk to the mother of a Caesarean section delivery (which would not guarantee the prevention of transmission of the infection). Evidence accumulated by the UK Herpes Association contained no cases of neonatal herpes simplex infection in which a mother who had genital symptoms of HSV prior to her pregnancy had transmitted the infection to her baby during birth (SphereÐNewsletter of the Herpes Association, 8(1), p. 5).

2. By the early 1990s, some of the misconceptions about herpes simplex, for instance about modes of transmission, were being corrected. An article in Family Circle’s `health fact file’ (April 1993) stated:

It is possible to catch genital herpes by having oral sex with someone who has a cold sore. However, there is no evidence to suggest that the virus can be transferred from your face to your genital area by touch, except during your very first attack.

Marie Claire (August 1993, UK edition) reassured that herpes simplex is `not transmitted by sharing cups, towels, toilet seats, bath water or swimming pools’ and that `despite much misinformation in the 1980s , cervical cancer is not causally related to HSV’. Memuna Forna in The Guardian (30 May 1991) attempted to set the record straight in relation to the risk of pregnant women passing the infection to their babies:

The virus has been associated with foetal defects, but many of the scare stories have now been disproved. There are in fact only two areas of risk: if a woman gets HSV during the early stages of pregnancy, she may miscarry and if a sore is present just prior to birth

Under the headline `What happened to the herpes plague?’, Frances Hubbard in the Daily Express (17 October 1990), wrote of the commonness and relative harmlessness of the condition:

By middle-age, 90 per cent of us have antibodies to the virus in our blood. It is only the unlucky few who get those dreaded blisters ¼ Most live happily with it without suffering a single symptom

3. Valaciclovir is a newer version of Aciclovir with greater bioavailability and thus effectiveness.


Herpes Viruses Association (UK)

NHS - Genital Herpes

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The "herpes hype" seems to be in full force in Australia, as we can check through this website, from something called "The Australian Herpes Management Forum", entirely funded by Novartis, the drug company that makes another herpes antiviral, Famvir. It's horrendous and pathetic how little has changed in the marketing strategy from this people since the early 90's and how the stigma about a common and mostly harmless medical condition is continuously promoted by stupid ads and propaganda. The main difference is the emphasis now put on the risk of HIV acquisition if you're infected and the studies that have shown that virus is never dormant or latent, "you shed virus all the time and can spread herpes all the time" - studies sponsored by GSK this past decade.

There's plenty information in this site for doctors on how to give "the devastating news" to their patients, horror pictures of extreme cases, silly interviews to radio and TV stations and plenty of information about "daily supressive treatment" (with Famvir). It won't take long for the "herpes paranoia" to take over, as it did in the US (if it hasn't already). Quite likely, GSK and Novartis cannot advertize their prescription medication directly to the public, as Valtrex does in America, so this "independent forum" does the propaganda for them. Some doctors have complained about the disease mongering and propaganda about Valtrex through the Internet that leads some Australians to go demand it to their doctors:

"Good on you Sam for putting some sunlight on this problem. Be careful of valacyclovir promotion please people: it's heavily promoted by its drug company owner, and it can be of marginal benefit (despite being extremely expensive). The marketing of this drug is obscene in my view anyway (I'm a dr and get endless demands from it because of sneaky websites that basically promote what is a prescription drug - improper)."

"Herpes", Sam de Brito chronicle

A site like this, and a "marketing strategy" like this one, would not be possible in most other countries in the world (it would look either grotesque and criminal, or just plain stupid and silly). I wonder why...

Face up to herpes risk from kissing

Danny Rose

August 17, 2009

It's one of life's simplest pleasures, but even a kiss comes with a health warning.

The symbol of affection is a major transmitter of herpes, warns the Australian Herpes Management Forum (AHMF) ahead of the roll-out of a national ad campaign.

AHMF executive director Tricia Berger says while kissing "demonstrates love and affection" and it was a "very common activity" it posed risks to both adults and children.

"No parent kissing their child or partner kissing their girlfriend wants to pass along the Herpes Simplex Virus (HSV), but people should be aware this is the main method of transmission," says Ms Berger.

"Once you have been infected with HSV-1 or HSV-2, the virus stays in your body for life and can be reactivate at any time."

More than 75 per cent of Australians carry HSV-1, the variant of the virus otherwise referred to as cold sores.

It is commonly acquired as a child from contact, often a kiss, with adult relatives.

Despite the high prevalence, only 30 per cent of adults in Australia and New Zealand report experiencing cold sores.

When a person becomes infected, Ms Berger says they will not always have typical cold sore symptoms.

"If you have a herpes sore on or near your mouth, its likely that you'll pass the virus along to whomever you kiss," she says.

"It is also possible to transmit the virus even when there are no apparent sores or symptoms, but the risk is higher when the sores are visible."

HSV-1 is also responsible for 40 per cent of genital herpes cases, while about 12 per cent of people have the virus' HSV-2 variant which is the most common cause of genital herpes.

Ms Berger says the herpes-risk posed by kissing would be the central theme of a new community service awareness campaign.

Television and radio ads will be aired nationally from August up to National Herpes Awareness Day, in October.

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