Features & profiles
Australia's herpes epidemic
27 June 1984
Published in the National Times
Australian society is undergoing a major epidemic of a serious and disruptive disease. The disease is genital herpes. The evidence for this is available from Government health surveys, and is confirmed by a number of independent experts.
Is herpes untreatable? Not at all, as we will see. But in Australia - more than most developed countries - promising new avenues of treatment are left to gather dust, research into potential cures remains unfunded, and sexually active Australians remain uneducated as to the risk of contracting the disease. The blame for this is shared by the medical/scientific community and our state and federal governments.
For example Dr John Cornwall, South Australia's Health Minister, told me he thinks herpes prevalence has been greatly exaggerated in the media, and doesn't warrant any further action at present.
Commonwealth Health Minister Dr Neal Blewett simply says "It is not possible (unfortunately) to guage what amount of infection is present in the community at any one time... (or) what rates of disease recurrence appear on a yearly basis..."
This is not really true. Every month Dr Blewett's own Department publishes Communicable Disease Intelligence figures, which usually reveal that herpes simplex virus type 2 (HSV2) is the most commonly reported virus in the country. HSV2 is the virus usually responsible for genital herpes.
This of course doesn't mean herpes is more prevalent than, say, flu, which is probably "reported" far less often. But the CDI figures must at least indicate trends, or there would be no reason for their existence. Where herpes is concerned the trend is best summed up by one word: epidemic.
This is confirmed by reports from Sexually Transmitted Disease clinics around Australia. The Sydney STD Clinic, for example, reported an exponential 900 percent rise in herpes incidence between 1973 and 1981. Even in a venereological backwater like Tasmania, where other STDs are actually in decline, herpes is on the increase.
American Government estimates have just been revised - again - to 600,000 new cases annually. The total number of sufferers is thought to be in the tens of millions.
La Trobe University's Dr John May - perhaps Australia's leading HSV2 scientist - estimates there may be one million Australian genital herpes sufferers.
All this information has been made available to government, so it's hard to understand Dr Blewett's claim that little is known about prevalence. It's true that there are no absolute figures, but every estimate and every sampling program puts the numbers shockingly high. It's even harder to comprehend Dr Cornwall's assertion that herpes is nothing to get excited about. Such attitudes fly in the face of the idea that Labor governments are all about reform.
Is herpes spreading so fast because of our society's rampant promiscuity? Not entirely. Some blame can be given to the lower prevalence of the cold sore (due to modern hygiene, and less crowding). The virus which causes cold sores, herpes simplex type 1, creates partial immunity to HSV2.
This also explains why genital herpes frequently strikes in higher socio-economic brackets than other STDs: those brought up in poorer conditions probably get cold sores more frequently in childhood.
Then there's stress, which is perhaps more widespread now than ever. Herpes is contracted - and recurs - far more readily in times of stress, because stress depresses our immune systems.
Other theorists put some blame for the epidemic on the widespread use of antibiotics, which also may have impaired our immune systems.
Lastly, there's the advent of the Pill, which has put the humble condom on the road to obscurity: for all its problems the condom does provide some protection against sexual disease.
Another theory (my own) concerns allergy. Herpes recurrence may be precipitated by allergies, according to American researchers. And Sydney orthomolecular scientist Dr William Vayda notes his herpes patients frequently don't respond to treatment till he has first cleared their allergies. Allergy is enormously prevalent in this polluted century: it is made far worse because people have also migrated from their genetically "accustomed" environments. This may partially explain why genital herpes is today an epidemic, whereas a hundred years ago it was relatively uncommon.
So promiscuity can hardly be cited as the sole reason for our herpes epidemic. It is though. Phyllis Schlafly, the right-wing American moralist, believes herpes is a visitation from a displeased God. (Mrs Schlafly also feels nuclear weapons are a gift to America from a wise Creator - presumably the same One. It seems her perspicacity as a moralist is by no means an isolated talent.)
Complications from herpes are generally over-rated. Cervical cancer is more common in women with herpes, but six-monthly Pap smears will generally pick up abnormalities in plenty of time for successful treatment. Similarly, babies can contract herpes in the birth canal, but obstetricians now have routine procedures for averting this (and should always be informed of the mother's herpes in advance).
There's more good news too. For pathologists there is the development, by Dr John May and colleagues, of a blood diagnostic method for HSV2. This is a world first for Australian science, and means genital herpes can now be diagnosed quickly and accurately by blood sample. No more scrapes and smears and waiting for infections to appear.
Good news for patients is contained in a retrospective study by leading California dermatologist Dr Stanley Bierman, which was published in the Journal of Mind and Behaviour in 1982. He found that, while many people seem to be stuck with herpes indefinitely, more than half his 425 genital herpes patients had recovered spontaneously. The average time was three years.
The American drug acyclovir (ah-CYCLO-veer) is a major treatment breakthrough. It is possibly the most exhaustively researched drug in history. Results so far have indicated that it's safe, and can cut severity and healing time substantially. It is currently available in the US and the UK.
However last month the Commonwealth Health Department denied Australian marketing approval for acyclovir. The drug, according to its maker Wellcome Australia, may now not be available in the easily utilised tablet form till June 1985. This is a heavy blow to Australia's herpes patients, who have understandably been awaiting acyclovir's arrival with bated breath.
Also of immense importance is the development of the Skinner HSV2 Vaccine. Dr Gordon Skinner, Consultant Virologist at the Birmingham Medical School, UK, believes his vaccine can prevent HSV2 infection in most people. According to Dr Skinner, only two of the 200 "at risk" people he has vaccinated have displayed symptoms of genital herpes since vaccination. (The 200 were mainly partners of herpes patients.) Additionally, Dr Skinner did a trial in which he vaccinated 22 herpes patients after their first outbreak, and studied another 20 patients whom he did not vaccinate. From the first group, only seven had attacks during the subsequent year, compared with seventeen in the unvaccinated group.
People with existing recurrent herpes may also benefit from the Skinner Vaccine, according to results presented to the 17th International Congress on Herpes Virus of Man and Animal in 1981. Seventy percent of patients with recurrent herpes in one small study indicated that their condition had improved, including all six patients with "continuous" outbreaks - who reported the sequence broken.
Dr Skinner hopes his vaccine will be available worldwide within two years. The wait is to enable further trials, and to allow time to make enough vaccine. World rights have just been bought by the aggressive British biotechnology company Alarbrook. This should see the vaccine reach Australia with minimum delay (providing our Commonwealth Health Department doesn't create difficulties).
Dr Skinner is an irreverent delight in this frequently tedious field. He recently submitted a lengthy Commentary on the herpes problem to the British Journal of Obstetrics and Gynaecology. In it he urgently recommended widespread public education on the disease - something the Australian Government could well note. He also wants more energy put into herpes drug and vaccination programs. He ran into trouble with the Journal's editors, however, when they discovered these lines from Robbie Burns:
Wi' lightsome heart I pu'd a rose
Frae aff its thorny tree,
And my fause luver staw my rose,
But left the thorn wi' me.
Perhaps the finest metaphor for herpes transmission in British literature.
Some American scientists are sceptical of the Skinner Vaccine. Much of this is transatlantic jealousy: many of them are working, less successfully, on their own vaccines. One criticism is that Skinner's trials have not generally been double-blinded. (That is, the trials have not been constructed in such a way as to remove the psychological effect.) Despite the vaccine's enormous success so far, it must be noted that this is true - however double-blind trials are starting soon.
Skinner retains an interesting perspective on his critics:
"At a recent conference I was amused to hear an eminent colleague from the USA pronouncing with great solemnity that a vaccination program against herpes was "conceptually, morally and socially a dead duck". He later requested vaccination, to which I agreed without comment. It's nice to be British."
Dr Skinner has run a double-blind trial on lithium ointment, the results from which appeared in The Lancet on July 30, 1983. The trial demonstrated that lithium ointment cuts pain and discomfort for herpes patients from seven to four days, and cuts average healing time from eight to seven days. Currently lithium ointment is not available here. (Where are the entrepreneurs? Lithium isn't even patented.)
The early data on "specific dose" flu vaccine for use against herpes is also impressive. Eminent American allergist Dr Joseph Miller, who pioneered the therapy, recently stated he has money available to fund an objective trial, should a doctor with the right facilities be interested...
Some former herpes sufferers even claim cures (more accurately described as long-term remissions) from homeopathy, acupuncture, and vitamin therapy. An equal number seem to say these therapies have done nothing for them. So caution is advised: levels of expertise fluctuate enormously among holistic practitioners. Many of them know even less about herpes than the average GP. (This is really saying something.)
SOVIET DRUG MAY BE CURE FOR HERPES 2, trumpeted Sydney's Sunday Telegraph on June 20, 1982. But the literature relating to Oxolene reveals that no such claim has ever been made for it, even in Russia. For the Telegraph to discuss it in the same breath as the word "cure" was pretty irresponsible. Herpes sufferers have enough trouble sorting fact from fiction as it is.
This brings us to the crux of the problem with herpes treatments: none of them cure it. "Pro-host" therapies (including vaccines) apparently slow the virus down by boosting the immune system; and antiviral drugs such as acyclovir actually get in there and clobber it themselves. But no treatment can yet eliminate HSV once it has lodged in its permanent hiding place near the base of the spine - in the so-called sacral ganglia. This is partly because gaining access to these ganglia is impossible for most agents, and also because HSV2 - cunning fiend that it is - seems to "disassemble" itself into a different, unrecognisable form once it gets there.
Nevertheless several ways round this dilemma have been suggested.
The first potential cure is currently being trialled by dermatologist Dr Stanley Bierman in Los Angeles. It involves temporarily destroying the genital skin nerves with phenol. This, he observes, may influence the virus in the ganglia not to reactivate, although how or why is unknown.
Another proposed cure was described by Doctors Fox and White, from the Department of Microbiology at Melbourne University, in the Canadian journal Medical Hypotheses in 1980. They suggest coupling an antiviral drug with an agent able to travel "backwards" along the nerve pathways - from the genital skin to the distant sacral ganglia. (Such agents do exist.) The Fox/White theory has not been put to the test. Until funds and enthusiasm materialise it will continue to gather dust, as it has since publication.
A third thesis - my own - is aimed at yet-to-be infected people only, and not at existing herpes patients. The concept combines existing virological knowledge with effective PR. The virological part involves killing off the virus in the human body before it has time to make it to its hiding place, and to establish the state known as "latency". The PR involves making all possible "future" herpes patients (i.e. the general public) aware of this treatment possibility.
To explain: an American physician, Dr Harvey Sklar (from Englewood Hospital, New Jersey) has made the singular discovery that genital herpes can apparently be cured, permanently, with injections of Adenosine Monophosphate (AMP) during the first outbreak. His cure rate, for nearly 1,000 patients, is 95 percent. These figures are from his own records, and are not double-blind results. Neverthless 95 percent can hardly be called anything less than "promising".
This phenomenon need not surprise us too much. Other therapies (administered early, in appropriate dosages) such as acyclovir, the Skinner Vaccine and 2 Deoxy-d-Glucose can possibly do the same thing - going by preliminary data anyway. What is needed is objective verification that this method works. After this, phase two, a public education program. The message: if you contract herpes, get treatment immediately. Those who call this scheme impractical need only look at the existing method of curing syphilis, which closely parallels it.
All the above looks promising. But absolutely nothing is being done about exploring most of these avenues. The few Australian trials in progress are in the hands of dedicated but hopelessly under-equipped GPs. Government interest, at state and federal level, is about nil.
Equally disturbing is that drug companies seem to like the idea of treating herpes ad infinitum. The concept of curing it, however, seems distinctly unappealing - presumably because of the mere one-off payment. This is well illustrated by acyclovir. For some time there has been evidence that it may at least reduce the subsequent rate of recurrence, in patients treated in the first episode. Dr Lawrence Corey, for example, noted in Annals of Internal Medicine last year that the first-episode patients he treated with acyclovir in one small trial had a forty percent lower rate of recurrence than untreated patients. Dr Corey is Associate Professor in the Virology Division at the University of Washington, and one of America's leading HSV researchers. Animal studies are even more promising, where this line of investigation is concerned. However research into it has been neglected - in favour of exploring the treatment of recurrences only.
Another problem is the profusion of useless remedies. Trial results have come to hand in the last month or so which demonstrate that both lysine and zinc tablets - once regarded as promising treatments - have no effect on herpes recurrences. Gossypol, a natural cotton-seed extract, was reported in the media as a "breakthrough" six months ago. But mainland Chinese pharmacologist Dr Qian, who used it in a recent trial with 8,000 men, reported to the 1980 World Conference on Pharmaceuticals and Therapeutics that such side-effects as impotence, loss of libido, appetite changes, and possible permanent sterility were not uncommon. Gossypol, it seems, would have a more credible application in chemical warfare.
Doctors and drug companies have also produced some gems, such as the recently abandoned dye-light therapy: not only doesn't it work, but it may cause cancer. Idoxuridine (IDU) is another treatment which may cause cancers - especially in combination with a skin-penetrating agent called DMSO. Dr Lawrence Corey put the IDU/DMSO combination through a controlled trial in 1982. His report was published in the Journal of the American Medical Association. It demonstrated that the therapy was a failure. Unfortunately some Australian doctors persist in using it.
The remaining ineffectual therapies make up a very long list. Some are almost beyond belief: snake venom oil, bleach, carburettor fluid, yoghurt compresses, clay toothpaste, haemorrhoid suppositories and wet tea bags. Someone's bound to suggest virgin's blood and voodoo dolls before long.
Genital herpes recurs when HSV2, for reasons unknown, leaves the neurons (nerve cells) in which it hides in the sacral ganglia, and goes forth and multiplies. Many factors appear to precipitate this in different people - stress (number one), menstruation, illness, the "skin trauma" of sex, alcohol, dope, another genital infection, sunburn.
But no common denominator has yet been discovered. This lack of fundamental knowledge, naturally, has made it difficult to even hope for a way of curing herpes. But America's famous cancer and virus specialist, Professor Fred Rapp from Pennsylvania State University, has come up with a genuine breakthrough:
"We...have now achieved systems in which we can induce the virus to go latent in the neurons in vitro (in the test-tube) and can, subsequently, activate the virus to multiply. This will allow us to dissect the molecular events which underlie latency as well as reactivation..."
When the virus does migrate down the nerve pathways from ganglia to skin, blisters appear, which are filled with a clear viral fluid. These usually turn into shallow ulcers then scab over and heal. The whole process may last about ten days.
The disease may be transmitted by skin-to-skin contact at any time up till the growth of new skin. That is, it is visibly (and often tangibly) obvious to all males and many females when they are infectious. That the disease has spread so rapidly means a lot of people simply aren't being careful enough.
Lack of communication between partners is probably the major reason for transmission, whatever the virological mechanics. Honesty between longer-term partners is sometimes difficult, and inconvenient, but it's essential if the uninfected partner is to be protected from contracting the disease. Honesty to casual partners is sometimes seen differently. While it's essential to protect them from infection too (and morally indefensible to do otherwise) some people maintain it would be too traumatic to tell every casual sex partner about their herpes. (Assuming, in the first place, that contact is taking place at an unmistakably "dormant" time.) Others are more strict, quoting the fact that transmission can occasionally take place when there are no symptoms. It's an individual decision.
Herpes is only rarely transmitted between attacks, however: some doctors say never. Catching it from toilet seats, towels, etc, is theoretically possible (so precautions are wise) but hardly ever seems to happen. What is more common is giving oneself an infection by moving a hand from, say, a cold sore to the genital region. This way one could contract genital herpes caused by the type 1 virus. Roughly 10 percent of genital herpes patients have a type 1 infection: though oral sex probably plays the main role here.
Whilst some herpes patients only have, for example, one attack per year, the majority have them far more often: every two months, every month - even constantly. Recurrence rates are frequently tied to stress levels: lowering these will usually result in less attacks.
How seriously can herpes interrupt one's life? Since my book was published last December I've put out a monthly research update to herpes patients and doctors (called HOPE Bulletin). A lot of letters and phone calls come back. While it's clear that up to half of all herpes patients have learned to cope very well, there's still the unfortunate, and often tragic, matter of the other half.
The litany of cancelled holidays, broken relationships and isolation is a story in itself. But perhaps some hard data will better illustrate the point.
According to a study done by Melbourne psychologist Michael O'Neil, 81 percent of herpes patients report less active sex lives. Nine percent of these report total abstinence. Seventy-three percent of patients have attacks which are "moderately uncomfortable to very painful".
O'Neil's study also found that most herpes patients keep their infections pretty quiet, which explains why the epidemic's existence is not as well-known as it could be.
A national study done by the US Herpes Resource Center tells us that 25 percent of American herpes sufferers have contemplated suicide.
Eighteen percent cited herpes as a factor in the dissolution of a marriage or long-standing relationship. And 40 percent stated their work performance had suffered because of the disease.
Both American and Australian studies reveal a profound and widespread dissatisfaction with the medical profession. Doctors were commonly seen as callous and unresponsive, and their therapies as unsatisfactory.
Many herpes patients have neverthless resolved the mental turmoil the disease can bring, and have even turned the situation to their advantage:
"More than once, I have found that my discussion of herpes has broken the ice and enabled my partner to discuss some personal aspect of his life that he might have found difficult to share...Given the myriad disabling diseases which can affect our lives and alter them acutely and permanently, we should keep this one in perspective. Many of the adjustments to be made because of herpes are the inevitable and natural outgrowths of maturity. For me, they have fostered personal growth and healthier relationships."
And again:
"Eventually, somehow, I told him...my hands were shaking and I felt really tense...He didn't react at all: no fear, no shock, no embarrassment. The only thing he did express, in a polite sort of way, was his surprise that I obviously felt so intensely about it. He really just said "So what?" to my whole supposed dilemma...All I saw in his face was the same love he'd been showing me before my "confession"...I began to realise that this guy was really interested in me as a human being, and didn't even care about my defects, real or imagined. I guess all the best people are like that."
Others can't quite seem to climb the mountain however:
"It's like a big black cloud that very rarely breaks to see blue sky. I feel trapped just like a spastic person, in a body that doesn't let the real person shine."
As these remarks suggest, emotional reactions to herpes vary widely.
The psychological implications of the infection are often worse than the disease itself. Herpes is, after all, not half as bad as many diseases. It's the fact that it can recur, unpredictably, again and again, which leaves many sufferers feeling insecure, unwashed and unloved.
The situation is sometimes compounded by the feeling that herpes is a punishment for promiscuity, and things can degenerate to where serious psychiatric disorders are precipitated. This is of course a "worst case scenario". But it happens often enough.
In response to the growing need for counselling, psychologists such as Michael O'Neil have come to specialise in caring for herpes patients.
The Herpes Resource Center, with 40,000 members across the US, has been responsible for establishing hundreds of self-help groups. Self-help groups are starting up around this country too. These can usually be contacted through the major STD clinics in capital cities. All this is doing wonders to alleviate feelings of isolation. Melbourne's self-help group has even applied for a $100,000 CEP grant to set up a counselling and information centre. If they succeed this will be an enormous advance on the present Australian situation.
In the US the Herpes Resource Center lobbies Congress tirelessly. Seminars are conducted with Congressmen, letter-writing campaigns are organised (these frequently influence Budget STD spending allowances), and there is now an annual "Herpes Day" on Capitol Hill: genital herpes patients from all over the country bus in to make their representations, meet their Congressmen, show slides - you name it. The Australian scene is almost dormant by comparison. More lobbying by herpes patients here would probably dislodge much official apathy - and would help, into the bargain, to relieve those insidious feelings of helplessness.
Dr David Bresler, until recently Director of the Pain Control Unit at the University of California in Los Angeles (UCLA), describes the state herpes patients sometimes get into as "learned helplessness". That is, they gradually convince themelves that nothing can be done. He teaches his patients to "unlearn" this attitude. Whilst American terminology is something of an epidemic itself thesedays, "learned helplessness" is probably apposite enough. It could also be applied to most scientists, doctors and governments, and it needs to be unlearned by them too.
Genital herpes was declared an epidemic by the American Government in March 1982. Since its prevalence became recognised in the US - back in the Seventies - there have been two phases in official attitudes. The first was characterised by a frantic search for a cure. When nothing much transpired, the importance of psychological counselling came to the fore. This was an important development, as many herpes patients simply weren't coping by themselves. However it can also be used as a a cop-out by those whose task it is to beat the epidemic. Giving herpes patients the message "learn to live with it" is an implicit admission that the disease is unbeatable. Dr David Bresler even says this attitude encouages "suicidal ideation". Apart from all that, it is wildly inaccurate.
Herpes is not invincible - despite what many "experts" tell us. Joe Louis and Malcom Fraser both seemed invincible at one time. Both went down for the count eventually. With persistence, and lateral thinking, and money, and most of all when those responsible extract the digit, herpes too will take its place in the history books, alongside smallpox and the bubonic plague.
2013 postscript: This was my first article in a national publication. The Wellcome Co. publicly condemned my claim that acyclovir could sometimes cure herpes during the first episode. However these days Wellcome markets the drug exactly thus. Apparently I'd read their studies better than they had.
Herpes seemed a disastrous visitation in 1984. But that view wasn't to last long: herpes was on the cusp of being eclipsed by AIDS - a virus only identified a year before this story was published. Herpes was soon relegated to 'minor annoyance' status. This reminds me of the story of the man who approaches his rabbi complaining that his house is too crowded. (The Indians have a version where he approaches a guru.) The rabbi instructs him to bring the farm animals in as well. After a week of that, he instructs the man to let the animals out. The man says, "The house seems very roomy now."
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