Herpes Viruses Association
Encyclopedia
The Herpes Viruses Association is a patient-led support group for people with herpes viruses, especially genital herpes and herpes zoster.
. The meetings enabled patients to exchange treatment advice and provide mutual emotional support. These patients went on to build an organisation that became the Herpes Viruses Association (HVA).
In early 1980, Sue placed an advertisement in Spare Rib, asking to meet other people with herpes. Initial contact between those who responded encouraged her to co-ordinate a collaborative article that was published in Spare Rib in late 1980. A positive response to this led to the first UK herpes self-help group meeting, for women only, in North London during March 1981.
Over the next 18 months, there was increased media focus on genital herpes generated by the pharmaceutical company Wellcome in its marketing drive for its new anti-herpes drug Zovirax (aciclovir). This created the ‘herpes stigma’ which exists to this day – see ‘stigma’ below. Members of the original group contributed to the debate: Sue and Carole appeared on television, and Carole wrote for Cosmopolitan and City Limits. Articles also appeared in the Daily Mail, Sunday Mirror, and Woman. The response was massive and donations also started to flow in. A mixed sex group was started in South London during the summer of 1982, following a notice in the personal columns of Time Out. It became evident that the number of people responding to the publicity meant that informal self-help groups could not cope with the load. So, Sue and others decided to set up the Herpes Association as a formal organisation, in August 1982. An inaugural conference at the Royal Horseguards Hotel, London was held in November 1982. Doctors from several UK GUM clinics attended including John K. Oates, author of 'Herpes: The Facts' (1973), Gordon Skinner and Adrian Mindel. By 1983 membership was growing steadily and there were eight local groups around the country. The first Annual General Meeting was held in March 1983.
In the first year of the charity’s existence over 3000 people were helped through replies to their letters, and more groups were set up so that people could get together for mutual support. The medical profession began to recognise the organisation as an established, responsible and knowledgeable resource. Members of the association began to be invited to speak about herpes simplex and the Herpes Association to sexual health clinics and postgraduate medical centres, as well as to medical students and other groups. The 'Herpes Association' was registered with the Charity Commission on 16 April 1985, registered charity number 291657 with one of its working titles being SPHERE.
The first small grants were obtained from the Department of Health (DH) and the Greater London Council in 1985, which enabled the fledgling charity to hire a staff member and an office.
The founders first grant was requested for just two years, they thought that providing the media with correct information about this "common and usually trivial condition" would abolish the stigma and mean that the charity was out of a job. In the light of the way that the stigma relating to herpes simplex has continued, their optimism seems remarkable.
A 1975 study of “Psychological morbidity in a clinic for sexually-transmitted disease” (Richard Mayou, The London Hospital). In the Journal of Clinical Investigation, 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’
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.
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.
Shingles Support Society
A sub-group, the Shingles Support Society was created in 1995 in response to requests for treatment information from patients with post herpetic neuralgia, a consequence of shingles, which is a recurrence of herpes varicella (chickenpox). The Society is run from the same office as the HVA and shares the helpline but now has a dedicated www.shinglessupport.org website.
Funding
For the first 10 years, grants were given by the Department of Health and the Greater London Council. However, re-organisation of London’s government saw the end of that grant since from 2008 the Department of Health has only funded new projects. The majority of the funds required to run the charity are received as donations and subscriptions from the people who value its services. The charity receives small grants from pharmaceutical companies, mainly those working on treating or preventing shingles pain. Very occasionally a bequest from a person who has suffered from shingles is received.
At first, carefully briefed volunteers replied by letter to enquiries received at a Spare Rib box number. When an office was opened, its phone line was soon augmented with a dedicated 'helpline number' where callers could acquire treatment information and where psychological concerns could be addressed. An updated helpline remains a key service of the charity and over 4,000 calls a year are answered.
Website
The HVA website was launched in 2002 and immediately established itself near the top of web searches for ‘herpes’. The ‘Frequently Asked Questions” section comprehensively covers issues of concern for new and old patients. By August 2010 annual visits were 360,000 per year. The site is regularly updated and includes details of support meetings.
Publications
The HVA’s main publication is ‘Herpes Simplex – The Guide’, now in its 10th edition. It is a 16 page, 6000 word booklet with similar information to the ‘Frequently Asked Questions’ section of the website. It is mainly sold in bulk to clinics where it is handed to newly diagnosed patients. Around 15,000 copies are distributed each year.
Membership services
The charity encourages contacts to become members. This serves two purposes: it ensures that people can get more written information and advice if they need it – members receive a magazine – SPHERE – four times a year as well as a range of useful literature that is not replicated on the website; and it provides the charity with an income stream to help to pay for ongoing activities. Some members join for one year, others continue to support the charity long term.
Leaflets on specific aspects of the condition are provided for members as well as invitations to talks and workshops in London. Social events are also organised by members outside London.
Helping healthcare workers
The HVA sends speakers to give training talks to staff and provides materials for them to hand out to their patients: cards, leaflets and the booklet 'Herpes Simplex - The Guide’. Since people calling the HVA helpline can talk for as long as they wish, this service lessens the burden on Sexual Health Clinics’ advisers and other healthcare workers. Ideas on self-management of outbreaks can lessen the number of prescriptions for antiviral pills that need to be issued.
Media
The HVA provides the facts to inform articles and programmes, as well as case histories of people willing to be interviewed. Even when a case history is found who can give an up-beat story and a happy ending, such articles usually get a heading which continues to propagate the stigma. (The lady who talked to the Evening Standard journalist was furious that her story was headed “I’m not promiscuous but my life has been blighted by an incurable sexual disease.” 23-4-2003]
History
The Herpes Viruses Association (originally the Herpes Association) was founded in early 1980 in London by Sue Blanks and Carole Woddis. The charity’s formal establishment was preceded by a series of self-help meetings initiated by Blanks and Woddis, following an advertisement in the Women’s magazine Spare RibSpare Rib
Spare Rib was a second-wave feminist magazine in the United Kingdom that emerged out of the counter culture of the late 1960s as a consequence of meetings involving, amongst others, Rosie Boycott and Marsha Rowe.-Description:...
. The meetings enabled patients to exchange treatment advice and provide mutual emotional support. These patients went on to build an organisation that became the Herpes Viruses Association (HVA).
In early 1980, Sue placed an advertisement in Spare Rib, asking to meet other people with herpes. Initial contact between those who responded encouraged her to co-ordinate a collaborative article that was published in Spare Rib in late 1980. A positive response to this led to the first UK herpes self-help group meeting, for women only, in North London during March 1981.
Over the next 18 months, there was increased media focus on genital herpes generated by the pharmaceutical company Wellcome in its marketing drive for its new anti-herpes drug Zovirax (aciclovir). This created the ‘herpes stigma’ which exists to this day – see ‘stigma’ below. Members of the original group contributed to the debate: Sue and Carole appeared on television, and Carole wrote for Cosmopolitan and City Limits. Articles also appeared in the Daily Mail, Sunday Mirror, and Woman. The response was massive and donations also started to flow in. A mixed sex group was started in South London during the summer of 1982, following a notice in the personal columns of Time Out. It became evident that the number of people responding to the publicity meant that informal self-help groups could not cope with the load. So, Sue and others decided to set up the Herpes Association as a formal organisation, in August 1982. An inaugural conference at the Royal Horseguards Hotel, London was held in November 1982. Doctors from several UK GUM clinics attended including John K. Oates, author of 'Herpes: The Facts' (1973), Gordon Skinner and Adrian Mindel. By 1983 membership was growing steadily and there were eight local groups around the country. The first Annual General Meeting was held in March 1983.
In the first year of the charity’s existence over 3000 people were helped through replies to their letters, and more groups were set up so that people could get together for mutual support. The medical profession began to recognise the organisation as an established, responsible and knowledgeable resource. Members of the association began to be invited to speak about herpes simplex and the Herpes Association to sexual health clinics and postgraduate medical centres, as well as to medical students and other groups. The 'Herpes Association' was registered with the Charity Commission on 16 April 1985, registered charity number 291657 with one of its working titles being SPHERE.
The first small grants were obtained from the Department of Health (DH) and the Greater London Council in 1985, which enabled the fledgling charity to hire a staff member and an office.
The founders first grant was requested for just two years, they thought that providing the media with correct information about this "common and usually trivial condition" would abolish the stigma and mean that the charity was out of a job. In the light of the way that the stigma relating to herpes simplex has continued, their optimism seems remarkable.
Stigma
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). In the Journal of Clinical Investigation, 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’
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.
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.
Organisation
The charity is run by an Executive Management Committee elected from the membership, which supervises the HVA’s two members of staff. See ‘About us’ page of HVA website for details of staff and the charity's nine patrons. As a patient-run charity, activities and publications are informed and monitored by the needs of people with herpes simplex, their partners and their families. At the Annual General Meeting (held at least every 15 months) committee members are elected or re-elected. The name of the charity was changed from the Herpes Association to the Herpes Viruses Association in 1995, to reflect its increasing activities in providing advice for shingles patients and those affected by other herpes viruses such as Epstein Barr. The new name was also intended to draw attention to the fact that ‘herpes’ is a family of viruses – there are now nine identified human herpes viruses –and it is normal for most people to carry several of them.Shingles Support Society
A sub-group, the Shingles Support Society was created in 1995 in response to requests for treatment information from patients with post herpetic neuralgia, a consequence of shingles, which is a recurrence of herpes varicella (chickenpox). The Society is run from the same office as the HVA and shares the helpline but now has a dedicated www.shinglessupport.org website.
Funding
For the first 10 years, grants were given by the Department of Health and the Greater London Council. However, re-organisation of London’s government saw the end of that grant since from 2008 the Department of Health has only funded new projects. The majority of the funds required to run the charity are received as donations and subscriptions from the people who value its services. The charity receives small grants from pharmaceutical companies, mainly those working on treating or preventing shingles pain. Very occasionally a bequest from a person who has suffered from shingles is received.
Current activities
HelplineAt first, carefully briefed volunteers replied by letter to enquiries received at a Spare Rib box number. When an office was opened, its phone line was soon augmented with a dedicated 'helpline number' where callers could acquire treatment information and where psychological concerns could be addressed. An updated helpline remains a key service of the charity and over 4,000 calls a year are answered.
Website
The HVA website was launched in 2002 and immediately established itself near the top of web searches for ‘herpes’. The ‘Frequently Asked Questions” section comprehensively covers issues of concern for new and old patients. By August 2010 annual visits were 360,000 per year. The site is regularly updated and includes details of support meetings.
Publications
The HVA’s main publication is ‘Herpes Simplex – The Guide’, now in its 10th edition. It is a 16 page, 6000 word booklet with similar information to the ‘Frequently Asked Questions’ section of the website. It is mainly sold in bulk to clinics where it is handed to newly diagnosed patients. Around 15,000 copies are distributed each year.
Membership services
The charity encourages contacts to become members. This serves two purposes: it ensures that people can get more written information and advice if they need it – members receive a magazine – SPHERE – four times a year as well as a range of useful literature that is not replicated on the website; and it provides the charity with an income stream to help to pay for ongoing activities. Some members join for one year, others continue to support the charity long term.
Leaflets on specific aspects of the condition are provided for members as well as invitations to talks and workshops in London. Social events are also organised by members outside London.
Helping healthcare workers
The HVA sends speakers to give training talks to staff and provides materials for them to hand out to their patients: cards, leaflets and the booklet 'Herpes Simplex - The Guide’. Since people calling the HVA helpline can talk for as long as they wish, this service lessens the burden on Sexual Health Clinics’ advisers and other healthcare workers. Ideas on self-management of outbreaks can lessen the number of prescriptions for antiviral pills that need to be issued.
Media
The HVA provides the facts to inform articles and programmes, as well as case histories of people willing to be interviewed. Even when a case history is found who can give an up-beat story and a happy ending, such articles usually get a heading which continues to propagate the stigma. (The lady who talked to the Evening Standard journalist was furious that her story was headed “I’m not promiscuous but my life has been blighted by an incurable sexual disease.” 23-4-2003]