Though Aids remains an uncommon disease in Britain, the government's promotion of the Aids panic has spawned a sizeable bureaucracy. Tessa Myer investigates the Aids establishment
The Aids establishment
There are about 2000 people with Aids living in Britain. Though current treatment regimes have prolonged life expectancy from 12 to 18 months on average, more than 500 people are dying every year from Aids. This is a tragic loss of life, especially as it largely affects young people. Yet it is important to see the disease in perspective: 10 times as many people, also often young, die every year in car accidents. Workplace accidents and occupational diseases kill three times as many people as Aids each year. More than 2000 people die every year from other infectious diseases.
But Aids is not just a disease. It is also the focus of a moral panic, the vehicle for the government's crusade for a return to traditional family values. One result of the special status of Aids is that people with the disease tend to be treated in special units and hospices. They are patronised by film stars, pop singers and royalty and receive the attentions of an army of professional and volunteer Aids workers. It seems that for every person with Aids there is now at least two Aids professionals. However, the majority of professional Aids workers are not engaged in caring, but in what is called prevention, which means in practice promoting the government-sponsored panic.
Aids is a fashionable charitable cause. Just as in the past middle class do-gooders tried to save the London poor or the starving of Africa, they now turn the same combination of guilt, voyeurism and sanctimoniousness to the issue of Aids. The rapid expansion of government spending on Aids, together with the ready availability of charitable donations raised through showbiz events or discreet approaches to big companies and prosperous individuals, has turned the safe sex bandwagon into a gravy train. The Aids establishment provides opportunities for self-advancement to numerous individuals from doctors to erstwhile gay radicals. The result has been the emergence of a parasitic bureaucracy that feeds off the fear and suffering caused by Aids. It devotes its energies to promoting the government's campaign as a condition for its self-perpetuation and advancement.
Aids quangos, or 'service organisations' have proliferated to such an extent that there are now meta-quangos, such as the National Aids Trust, which are largely concerned with coordinating other Aids organisations. Though the panic is less than a decade old, there is already a generously endowed 'Aids Social History Programme' based at the London School of Hygiene and Tropical Medicine. In her recent account of 'The early years of Aids in the UK', the programme's deputy director, Victoria Berridge, traces the convergence of doctors, politicians, civil servants and the gay lobby in a 'policy community' at the Department of Health in the early 1980s (see T Ranger and P Slack, Epidemics and Ideas: Essays on the Historical Perception of Pestilence). These diverse forces were united in their commitment to 'a clear policy line - the danger of a heterosexual epidemic'. When, in 1986, the government declared the equivalent of a 'wartime emergency' on the Aids issue, transforming it from a departmental concern into a focus of national mobilisation, they sought to consolidate their position in the emerging Aids machine.
Berridge indicates how doctors working in the 'Cinderella speciality' of genito-urinary medicine seized the opportunity to 'come in from the cold' and make their field a 'primary career option'. The future of epidemiologists at the Communicable Diseases Surveillance Centre, which had been uncertain, was secured by the need for close surveillance of the spread of HIV and Aids. While the debate over the possible closure of one of the central London teaching hospitals continued, the Middlesex, Westminster and St Mary's built up specialist Aids units to provide a new source of prestige and a means of attracting funds. On the other hand, though the Terrence Higgins Trust had participated in the early private discussions of the 'policy community', by 1986/87 it was already being pushed to the sidelines because of the government's desire to avoid too close a public association with the gay scene.
Five years later, though the number of cases remains small, Aids has become a new medical speciality, offering promising careers to newly qualifying doctors. According to Department of Health figures, 1500 medical and nursing staff are now engaged full-time in caring for Aids patients. Unlike most other areas of medicine, the Aids sector is flush with funds for clinical and laboratory research. There are now several specialist Aids journals, the number of published medical articles on Aids is approaching 50 000 and visitors to the medical department of Dillons bookshop in central London can browse among 250 titles in the Aids section.
While doctors and others involved in caring for people with Aids may be legitimately accused of empire-building, of exaggerating the scale of the epidemic and 'shroud-waving' to attract funds, at least they are providing a useful service. It is doubtful whether the same can be said for the much larger body of people involved in promoting 'HIV awareness'. These workers, the foot-soldiers in the Aids crusade, are employed in a network of teams and committees sponsored by health authorities, local councils and voluntary organisations. Their work involves disseminating Aids publicity and propaganda, counselling and training, running courses in workplaces and schools. They organise periodic conferences and events to mark 'World Aids Day' on 1 December. The London Borough of Hackney's Action on Aids team celebrated this occasion in 1990 by appearing outside the town hall 'dressed in costumes ranging from a 10-foot condom to a multi-ethnic penis' (Health in Hackney, Annual Report, 1990).
It is striking that, though Aids professionals are adept at manipulating the media, they are themselves publicity shy. Despite the plethora of Aids literature and handbooks there is no centralised data on the numbers involved in this wing of the Aids establishment. However, by studying the unpublished reports on Aids services submitted by district health authorities to the Department of Health under the terms of the Aids (Control) Act 1987, it is possible to piece together the national picture. Surveying in detail the Aids network in two city areas - Hackney and Manchester - gives some insight into the roles of different agencies.
In February 1989 the Department of Health asked every health authority to appoint an HIV prevention coordinator, and 70 per cent of authorities have complied with this request. The coordinators are responsible for developing a local Aids prevention strategy, for supervising its implementation and for liaising with local authorities, voluntary groups and other bodies. Though health authority reports record separately staff engaged in medical/nursing care and those engaged in prevention/promotion, in fact there is a considerable overlap. Many doctors and nurses share in Aids propaganda work by giving lectures and courses; some Aids prevention workers are also involved in providing practical support to people with HIV and Aids. However, our global estimate of the numbers involved in prevention treats these as two distinct categories. This gives a total for Aids prevention workers employed within the UK health service of 1739.
The tables on Manchester and Hackney (below) provide a profile of the Aids prevention establishment in two urban areas, where the total numbers of full-time workers are at least 24 and 12 respectively. In addition to the health authority teams, the local councils also employ a substantial number of Aids prevention workers. At the council level, Manchester maintains a top-level group of information officers and administrators and a centralised Aids unit. Hackney organises its Aids prevention work through its 'central training section' and its 'health promotion unit'. Both councils also employ Aids prevention workers in their social services and education departments. Inner London is better resourced by voluntary organisations. Aids workers in the council and voluntary sectors can be divided between those engaged in community care functions in relation to people with HIV or Aids and those engaged in prevention, though as with health authority workers there is often a considerable overlap. Our survey suggests that there are on average three prevention workers for every two community care workers.
On the basis of the Manchester and Hackney surveys, we have made a conservative estimate that the total number of Aids prevention professionals employed by councils in Britain is around 270, concentrated in London and the metropolitan councils
There are some 300 voluntary organisations involved in Aids in Britain. These range from prestigious national institutions like the Terrence Higgins Trust, which now has a paid staff of 50, divided evenly between those engaged in caring and those in 'information and education', to groups like the Christians in Hackney Aids Initiative, which has no paid staff and relies on volunteers. Another big Aids organisation is Aids Care Education and Training (ACET), a Christian body which runs a homecare network and a major programme for schools. It has 40 full-time staff and many volunteers. The London Aids hospices - the Mildmay Mission Hospital and the London Lighthouse - offer training, education and consultancy services as well as providing residential, home care and day care. According to one survey, around a third of Aids voluntary organisations have no full-time staff. Most groups, however, operate out of a small office with one or two paid staff. Our conservative estimate of the total number of full-time workers in the voluntary sector engaged largely in preventive work is 560.
Most Aids organisations are concerned either with raising the HIV awareness of a particular section of society - young people, drug users, prisoners, ethnic minorities - or with providing support for a particular group of people with HIV/Aids. One illustration of the irrationality of much of the work of Aids prevention is the preoccupation of some Aids professionals with targeting groups in which the prevalence of HIV is low, if not zero. The Black HIV/Aids Network has produced an information video in Hindi, Gujerati, Punjabi, Bengali, Urdu, Cantonese and Swahili. The Hackney Action on Aids team organised a conference last year for the local Turkish/Kurdish community, many of whom are recent immigrants and refugees at little risk of Aids, but in constant distress as a result of poverty, poor housing, racism and threats of deportation. Other groups have set about making Aids propaganda available to people who are blind or deaf or mentally handicapped. It seems that in the view of the Aids professionals missing out on the safe sex message must be considered the gravest discrimination.
Pulling together the numbers of Aids prevention workers employed by health authorities, local councils and voluntary organisations, we estimate that there are at least 2500 people engaged full-time in this sphere. It is important to emphasise that this is merely the hard core, the regular army of the Aids crusade. Much of the work of these Aids professionals is devoted to recruiting a wider network of informal and irregular forces who can disseminate the safe sex orthodoxy much more effectively. The more astute Aids activists have targeted their efforts at professionals like doctors, nurses, teachers, social workers who are in positions to influence others. The result is that the official line on Aids is relayed to the public via the Aids establishment and its periphery in such a way as to promote a powerful consensus on the issue.
From the top
So far we have concentrated on the rank and file of the Aids establishment. But to get a fuller picture we need to take in the forces coordinating the Aids panic at a national level. When the government decided to throw its full weight behind the Aids scare in 1986, the then prime minister, Margaret Thatcher, set up a cabinet committee to oversee the campaign. This committee has continued to coordinate the efforts of other government departments through the 'inter-departmental group on Aids'. The Department of Health is advised by its 'expert advisory group on Aids', which now supervises a range of subcommittees on different aspects of the epidemic. The department's 'Aids Unit' monitors prevention and funding. The 'all-parliamentary group on Aids' keeps MPs informed of developments. Top level think-tanks focusing on education, local authorities, prevention, etc, produce regular reports proposing strategies for dealing with the epidemic.
A number of other national bodies play an important role in shaping official policy on Aids and in directing the work of the Aids establishment. At an early stage in the epidemic the British Medical Association launched its Aids Foundation, sponsored by Wellcome, manufacturer of AZT the drug widely used to delay the progress of HIV infection. The Royal College of Nursing and the Royal College of Midwives have set up a joint Aids Nursing Forum. Even the TUC has set up a special committee to coordinate trade union initiatives on Aids. The Church of England's Board of Social Responsibility has taken a close interest in the Aids campaign, as have the other major churches. The National Aids Trust - patron the Princess of Wales, director Margaret Jay, chairman professor Michael Adler, trustee Robert Maxwell (oops!)--is the directors' box of the Aids voluntary organisations. To the myriad little groups it offers resources and guidance, management advice and a fund-raising consultancy. To the elite of the Aids establishment it offers access to the corridors of power and, no doubt equally important to them, the chance to meet Princess Di and the showbiz stars.
One of the most powerful organisations in the Aids field is the Health Education Authority (HEA), which now employs 15 full-time workers on its 'Aids and sexual health' programme. In its 1991 annual report the HEA claimed a major breakthrough:
'We at last succeeded in overcoming a most persistent obstacle: the disbelief in the significance of heterosexual transmission of HIV, which had been sustained for many years by a small but vocal group of influential people.'
This achievement against vocal but unnamed opponents was attributed to the impact of the HEA's television advertising campaign - 'TV campaign of the year' - featuring personal testimonies of heterosexuals with HIV.
The media has played such a key role in promoting the Aids panic that journalists must be considered an important component of the Aids establishment. From the icebergs and tombstones adverts to the Freddie Mercury concert, television has popularised the official line. In the press, journalists have built careers relaying the quarterly press releases from the Department of Health and instant quotes from the senior figures in the Aids establishment.
One of the ironies of the Aids establishment is that many of its members believe that, far from preaching a repressive moral line, they can use the safe sex campaign to promote a more imaginative approach to sex and sexuality. This view is popular on the radical wing of the Aids establishment, among gay activists and veterans of the left. But it is a self-delusion arising from an inability to perceive the true balance of forces between conservative and radical influences both in the Aids establishment and in society at large. At a time when broad social and political trends have created a climate of insecurity, the Aids panic has encouraged a wave of irrational fears. The result is a deepening sense of atomisation in society, a general strengthening of reaction and a retreat of the left.
In this climate it is not necessary for the government or the key figures in the Aids establishment to beat the drum about family values. They can afford to take a relaxed view, let the Aids activists distribute condoms and the Terrence Higgins Trust display its erotic posters and even allow a free vote in parliament on reducing the age of consent for homosexual acts. They are happy for the gay movement and the left to talk to one another in London pubs and clubs. Meanwhile, in schools throughout the country, ACET, the government's favourite Aids organisation, takes the lead. According to its latest annual review, parents and governors who may not favour official videos and literature about Aids, 'very often...are pleased to invite ACET in as a church-based agency'. Last year 24 000 'pupils' got the safe-sex line from this church-based agency. We can safely assume that they heard more about chastity, monogamy and fidelity than they did about the joys of banana-flavoured condoms and non-penetrative sex.
Loss of confidence
Despite the triumphant claims of the HEA, over the past year the growing evidence of the slow rate of heterosexual spread in Britain has provoked questioning of the usefulness of much HIV/Aids prevention work both from outside and within the Aids establishment. There have been revelations of large-scale underspending of moneys allocated for HIV/Aids services and the redirection of funds to other areas of the health service. These shortfalls reflected the inability of Aids workers to cope with the rapid expansion of funding in the late 1980s. The redirection of funds results from the fact that, because of the slow spread of HIV in Britain, demand is less than supply in the Aids field. The opposite is the case in the rest of the health service.
Unpublished health authority reports to the Department of Health reveal the widespread perception of a tension between the emphasis on the danger of imminent heterosexual spread and the reality of a low incidence of HIV cases. Trent, Oxford, North West Thames and West Midlands authorities expressed concern at the credibility gap arising for HIV prevention work:
'It is already proving difficult to sustain interest in districts of low prevalence, even amongst NHS staff let alone the general public.' ('Aids Control Act report', Trent RHA, 1991)
A certain loss of confidence within the Aids establishment has led to internal conflicts, exacerbated in the voluntary sector by the pressures of being in continual competition for funds. There has been mounting criticism of the affluent image projected by much of the Aids scene. Aids professionals are generally well-paid and cultivate a well-dressed, well-groomed look. Aids organisations outdo one another in producing elegantly designed and lavishly produced leaflets, posters and brochures. They have comfortable offices, tastefully furnished and decorated. For leading activists there is the special treat of the annual world Aids conference, held in places like Florence, San Francisco or Amsterdam and described by the Financial Times as 'a cross between a US political convention and a soap company's sales trip' (31 August 1991).
One expression of the crisis in the voluntary sector has been the shift of prominent gay activists, such as Edward King of the Terrence Higgins Trust, away from the consensus that the Aids establishment should emphasise the risk of heterosexual spread and play down the reality that more than 80 per cent of cases are among gay men. This was always a cynical and opportunist strategy that risked intensifying the anti-gay backlash. Now that this is beginning to happen and gay organisations are being squeezed in the quest for funds, they are hoping to win support by campaigning openly on behalf of the groups most affected by Aids in Britain. A new organisation - Gay Men Fighting Aids - has been set up. It seems likely to prove too little, too late.
After a decade of subordinating the cause of gay rights to the safe sex campaign, some activists are calling for the 're-gaying' of Aids. In fact what is required is the depoliticisation of Aids, by separating an infectious disease, requiring care and treatment (and research), from a moralistic campaign. The fight against Aids would however be greatly advanced by re-politicising gay oppression, separating the struggle for equal rights for lesbians and gay men from the issue of Aids. The disappearance of the Aids establishment would mark an advance towards both a rational response to Aids the disease and the ending of gay oppression.
(Table One) - Manchester
- Health Authorities
- 1 Regional Aids coordinator
- 1 HIV prevention officer
- 1 Assistant
- 3 HIV prevention coordinators
- 2 HIV trainers and 6 part-time trainers
- 2 Health promotion HIV/Aids workers
- 1 Administrator
- 2 Assistants
- 3 Part-time workers
- 1 HIV coordinator
- 2 Public education officers
- 1 Education administrator
- 2 Administrative workers
- 1 Information officer
Total on prevention work: 24 full-time and 9 part-time.
- 1 Aids unit coordinator
- 1 Environmental health officer
- 20 including Manchester Aids and Education Group, Body Positive and Manchester Aidsline.
(Table Two) - Hackney
Action on Aids Team:
Mildmay Mission Hospital:
- 1 Coordinator HIV education
- 1 Administrator
- 4 Health promotion workers
- 1 Head of education
- 1 Publicity manager
Health Promotion Unit:
- Central Training Section:
- 13 Part-time trainers on HIV prevention
Social Services HIV support team:
- 1 Group enviromental health manager part-time
- 1 Administrative officer part-time
- 1 HIV/Aids health promotion coordinator part-time
- 1 HIV/Aids health adviser part-time
Press, Publicity and Information Unit:
Black HIV/Aids Network:
Total on prevention work: 12 full-time and 19 part-time jobs
- 1 Team leader
- 1 Administrative worker
Voluntary organisations: 14 including Body Positive Women's Group, Christians in Hackney Aids Initiative, Positively Children
Reproduced from Living Marxism issue 45, July 1992