Chronology Of Aids In The United Kingdom
The periodization assigned to the epidemic varies. Jeffrey Weeks, for example, sees 1981–1982 as "the dawning crisis." Then followed (in 1982–1985) a period of "moral panic," when AIDS "became the bearer of a number of political, social and moral anxieties, whose origins lay elsewhere, but which were condensed into a crisis over AIDS." This period was followed by a period of "crisis management," beginning in 1985 and lasting until the present.[9]
Weeks, "AIDS: The Intellectual Agenda."
Weeks uses evidence both from the United States and the United Kingdom to support his case; the death of Rock Hudson in 1985 marked a turning point in public perceptions of AIDS in both countries. Other policy studies have focused on the "crisis management" period—the period when AIDS became a direct and immediate concern for politicians. The emphasis in these studies is on policy as a top-down process; on AIDS as exemplifying the role of the state in sending signals to the public, as well as receiving them; on the consensual nature of policymaking and the handling of AIDS within traditional British policy structures.[10]For examples of these interpretations, see Fox, Day, and Klein, "The Power of Professionalism"; Day and Klein, "Interpreting the Unexpected"; and Street, "British Government Policy on AIDS."
We emphasize different aspects to the AIDS story and specify three distinct policy phases. In the first phase (1981–1986), AIDS slowly became a national policy issue. Policy was essentially, particularly at the beginning, formed in a bottom-up rather than a top-down way. It was initially formed at the local level, both through gay groups and through the construction of clinical and scientific expertise. These groups coalesced to form an initial "policy community" around public health interests in the Department of Health. In the second and briefer phase (1986–1987), a period of "wartime emergency," AIDS came to be viewed as a clear political priority rather than simply a departmental matter, and sections of society were put on almost a wartime footing to meet what was regarded as a national emergency. This phase has been followed (1987–1988 to the present) by a phase of "normalization," where AIDS and the reaction to it are becoming part of the normal policy and institutional processes. The threat of immediate epidemic spread has receded; and the threat of widespread heterosexual infection no longer appears imminent. Changes in therapy and the time scale of disease progression have helped to bring about a model of chronic, rather than acute, disease, which has aided, but not determined, the process of normalization.
1981–1986: Construction Of A Policy Community
In the early 1980s there was little by way of a reaction from central government. In 1981 the Annual Report of the Chief Medical Officer noted that for the first time there had been more than half a million new cases of venereal disease, concentrated particularly in the more recently recognized sexually transmitted diseases.[11]
Annual Report of the Chief Medical Officer of the Department of Health and Social Security for 1981 (London: Her Majesty's Stationery Office [HMSO], 1982), p. 40.
However, at that time this increase was not regarded as so significant that it required political action. Ironically, too, the same report contained the conclusions of an advisory group on the management of patients with spongiform encephalopathy—namely, that "Creutzfeldt-Jakob disease was the only disorder caused by a transmissible slow virus agent which is likely to be encountered in the UK."[12]Ibid.
Initial knowledge of and reactions to AIDS had instead a volunteer ethos; knowledge of the disease was transmitted through existing gay networks and served also to consolidate them. New organizations also began to be founded. How did this gay response develop? Some gay men were in the United States in the early 1980s and began to hear about people dying of strange cancers. A member of a student gay group at Cambridge recalled that the groups's gay helpline began to get calls after a BBC Horizon program, "Killer in the Village," in 1983. The students began to look around for information and to hold weekly meetings on AIDS and health issues. "We were groping in the dark. There was no sense of there being anyone other than us to turn to."[13]
Interview, gay community worker, February 1989.
That television program, like others later in the epidemic, appears to have had a key impact on the gay response. Volunteers at the Gay and Lesbian Switchboard in London arranged to open up a special line after the program, and volunteers were specifically briefed. "For a number of days after, a lot of very worried people were ringing. … The 'Killer in the Village' program was absolutely crucial."[14]Interview, gay community worker, March 1989.
The Gay and Lesbian Switchboard was of central importance in the initial response. In May 1983 more than two hundred attended the country's first public conference on AIDS organized by the Switchboard. Mel Rosen, director of the New York-based Gay Men's Health Crisis, spoke. Some present at the conference remembered his words: "There's a train coming down the track and it's heading at you." A member of the audience recalled: "I was struck by the potential gravity of what was happening and the absolute silence on what was happening. There was very little in the mainstream press."[15]
Interview, gay activist, July 1989.
The Horizon program also led to the refounding (in 1983) of the Terrence Higgins Trust,originally established in 1982 by friends of Terrence Higgins, who had died of AIDS in abject circumstances in a London hospital. When the trust was refounded, many of the Switchboard volunteers—including Tony Whitehead, later chairman of the Steering Committee of the trust—moved over to it. By the end of 1983, the trust was producing its first leaflets on AIDS, and it opened its own AIDS helpline early in 1984. Articles in the gay press—for example, by Julian Meldrum, the trust's press officer and also a Capital Gay correspondent—forced discussion of issues such as safe sex and the role of promiscuity within the gay community. One gay man recalled, "Safe sex really hit London at the end of 1984."[16]
Interview, gay journalist, November 1988.
Also involved in the initial gay response was the Gay Medical Association, which produced a leaflet early on directed at doctors dealing with AIDS. Its response was to stress the potential and actual heterosexual nature of the disease. In April 1983 a letter in the British Medical Journal put this point strongly. In an AIDS review article, A. P. Waterson, a virologist, had compared the syndrome to diseases of overcrowded poultry, relating it, as was common at that time, to the use of nitrites and the high number of sexual contacts among some gay men.[17]
A. P. Waterson, "Acquired Immune Deficiency Syndrome," British Medical Journal 286 (1983): 743-46.
Gay Medical Association representatives commented: "Of course, promiscuity is an important factor in the spread of communicable diseases, but promiscuity is not the prerogative of homosexuals. … The homosexual community has demonstrated its awareness of its own health problems. We are confident that it will respond to health education programmes which are not underwritten by any prejudice or moralising." The correspondents pointed out that this condition could potentially affect the whole of society; already around 25 percent of cases to date had not been in homosexual males.[18]M. R. Farrell et al. (members of Gay Medical Association), "Acquired Immune Deficiency Syndrome," British Medical Journal 286 (1983): 1143.
Many dimensions of the initial gay response remain to be documented. But its voluntaristic, self-helping ethos is clear—with meetings in gay men's houses and flats and in gay pubs. "We formed an ad hoc committee … and I called a public meeting in the upstairs bar of the London Apprentice at Hoxton, a gay pub. It wasn't an education meeting, it was a recruitment meeting."[19]
Interview, gay activist, July 1989.
The "gay freemasonry," the already existing networks of gay men, operated to spread advice and information and to develop reactions to the disease. By 1983 organized sections of the activist gay community had developed specifically around the AIDS issue. (Such phrases are, of course, shorthand. We are wary of monolithic interpretations such as "gay community" or "medical profession," being aware of debates and tensions within these groups.)The policy aims were threefold: to convey the message of the dangers of AIDS to gay men; to develop a more public role (but without thereby sacrificing credibility among says) by raising public and political awareness of the dangers of an AIDS epidemic; and to prevent the danger of an anti-gay backlash by stressing—as the Gay Medical Association had done—the idea of AIDS as potentially and actually a heterosexual disease.
Another policy lobby was also forming at around the same time. Clinical and scientific expertise on AIDS was also in the process of being established. The human immunodeficiency virus was first identified in 1983. Up to and for some time after that date, there was an absence of the kind of scientific knowledge and scientific certainty that had come to be an expected concomitant of any normal fight against disease. Professor Waterson's 1983 summary demonstrated the uncertainty: "The most sinister feature of this acquired immune deficiency is that it appears to be communicable, perhaps principally by intimate physical contact." This scientific vacuum led to explanations couched in terms of morality rather than of science: "The traffic in human material in certain quarters by abnormal routes has reached such a level that, combined with the effects of drug abuse of various kinds, the sheer weight of chemical and microbial insult to the body in general, and to T-lymphocytes in particular, goes beyond the tolerable limit."[20]
Waterson, "Acquired Immune Deficiency Syndrome," pp. 743-46.
The Annual Report of the Chief Medical Officer for 1983 did not moralize but was no less tentative: "Expert opinion suggests that there is no risk of contracting AIDS as a result of casual or social contact with AIDS patients eg. on public transport, in restaurants, or in private dwellings. The spread of AIDS appears to require intimate contact."[21]Annual Report of the Chief Medical Officer of the Department of Health and Social Security for 1983 (London: HMSO, 1984), p. 45.
The explanations being advanced in the scientific and medical press—links with African swine fever; the virus emerging from Africa or Haiti—show that scientific knowledge of the sort normally taken for granted was in the process of being constructed.[22]See, for example, the range of articles in the Lancet or British Medical Journal in 1983 dealing with the origins of AIDS in Haiti and in swine fever.
Expertise also requires experts; and the AIDS experts initially came from a range of areas, such as immunology and virology, and from cancer research, where work on retroviruses had been undertaken for the previous twenty years and where the change from studying chicken viruses to studying human retroviruses had already been made because of new directions in leukemia research. Significantly, too, AIDS brought the area of sexually transmitted diseases and genitourinary medicine in from the cold. One participant commented: "It was a 'Cinderella specialty' with poor facilities and second-rate people working in it. … You
could go into genitourinary medicine without a higher medical qualification. … It was a pretty poor service in terms of the quality of physicians and facilities. … AIDS has helped—it's made genitourinary medicine a primary career option."[23]
Interview, genitourinary medicine consultant, February 1989.
AIDS meant, too, that a specialty not normally close to the center of policy formation in the health arena was drawn directly into a policy advisory role. The early researchers in the AIDS area in Britain came from this mixed type of background. Jonathan Weber and Robin Weiss at the Institute of Cancer Research were viologists; Anthony Pinching at St. Mary's and Richard Tedder at the Middlesex were immunologists; Michael Adler at the Middlesex and Charles Farthing at St. Stephen's were specialists in genitourinary medicine. The Social Services Committee report noted in 1987 the "haphazard recruitment" of expertise to AIDS.[24]
Social Services Committee, Third Report: Problems Associated with AIDS, vol. 1 (London: HMSO, 1987), p. viii.
There were undoubted tensions and differences, as there are in any scientific community; but these new-fledged scientific and medical experts also developed a consistent policy line and a means of airing it. Particularly noticeable was the high media profile they adopted in order to press the case for urgent action on the part of government. Certain of them adopted an overt public lobbying style, which was initially characteristic of the AIDS area. In the absence of the type of established policy consultative machinery that would exist in a well-established area of health policy, the experts resorted to the press and to television. In doing so, they were consolidating existing patterns of health reporting, which rely heavily on the small circle of medical "experts."[25]See, for example, Anne Karpf, Doctoring the Media: The Reporting of Health and Medicine (London: Routledge, 1988), for the role of medical experts in structuring the reporting of health matters. A particular example vis-à-vis hepatitis B is given by William Muraskin, "The Silent Epidemic: The Social, Ethical and Medical Problems Surrounding the Fight against Hepatitis B," Journal of Social History 22 (1988): 277-98.
But they were also joined by gay AIDS activists. The Terrence Higgins Trust in particular was aware of the value of using the media. It became "pretty clued up about news management," as one activist put it.[26]Interview, gay activist, July 1989.
Gay activists and the medical and scientific experts were prepared to be openly critical of lack of action on the part of government or the research councils. Anthony Pinching, for example, in his evidence to the Social Services committee, attacked the Medical Research Council's funding of AIDS research—peer review was in fact "peer refusal."[27]Social Services Committee, Problems Associated with AIDS: Minutes of Evidence, vol. 2 (London: HMSO, 1987), p. 153.
Jonathan Weber criticized its roles as "leading from behind."[28]Ibid., p. 53.
The type of public reaction that would normally lead to exclusion from the "corridors of power" in this case brought admission to them. For the external policy lobbies were complemented by the "public health" reaction to AIDS within the Department of Health. AIDS was initially dealt with through classic public health routines of monitoring and surveillance. From 1982 onward AIDS cases were monitored on a voluntary basis by the Communicable Disease Surveillance Center at Colindale
(part of the Public Health Laboratory Service, whose uncertain future was saved by its role in monitoring AIDS.)[29]
B. H. O'Connor, M. B. McEvoy, and N. S. Galbraith, "Kaposi's Sarcoma/AIDS Surveillance in the UK," Lancet 1, no. 2 (1983): 872.
CDSC doctors early on developed links with gay activists in the Terrence Higgins Trust. Sir Donald Acheson, the chief medical officer, as a public health epidemiologist himself, was also well aware of the disease's potential for spread. His annual reports made conscious references to the role of the great nineteenth-century public health pioneers, such as Sir John Simon, medical officer to the Privy Council Office. AIDS was, in his view, a disease that belonged in this great tradition of the public health fight against disease: "While the scourge of smallpox has gone and diphtheria and poliomyelitis are at present under control, other conditions such as legionellosis and AIDS have emerged. The control of the virus infection (HTLV III) which is the causative agent underlying AIDS is undoubtedly the greatest challenge in the field of communicable disease for many decades."[30]Annual Report of the Chief Medical Officer of the Department of Health and Social Security for 1984 (London: HMSO, 1986), pp. 35-37.
Acheson also spoke of "the need for the control of the spread of infection" as "an issue of prime importance to the future of the nation." Universally hailed for his role in AIDS by members of the policy lobbies ("If any honours are deserved for AIDS, he deserves one"), Acheson had held a meeting in late 1983 with gay activists to register support for the nascent Terrence Higgins Trust and its activities in the gay community. His department also issued a number of warning and advisory circulars: a circular issued by the Advisory Committee on Dangerous Pathogens to laboratory workers in 1984; a leaflet issued by the Health Education Council, Facts about AIDS; and advice for doctors in 1985.[31]
See Annual Report of the Chief Medical Officer of the Department of Health and Social Security for 1985 (London: HMSO, 1986), p. 46.
Also in 1985 the Public Health (Infectious Disease) regulations, made under the Public Health (Control of Diseases) Act of the previous year, were extended to cover AIDS.[32]Public Health (Control of Disease) Act, 1984, chap. 22; Public Health (Infectious Diseases) Regulations, 1985, No. 1546.
AIDS was, significantly, not made a notifiable disease. Acheson was strongly opposed to notification; and the strength of the historical record in the area of sexually transmitted diseases seemed to indicate that a voluntary approach would, for the moment, lead to the best results. But the regulations did allow some draconian precautions, such as the removal and detention in hospital of a person with AIDS (used only once) and restrictions on the removal of bodies from hospitals (for example, a requirement that body bags be used).The department's public health stance was given added impetus by the question of potential and actual heterosexual spread of the disease. This was part of the gay lobby's position; it also arose through the blood tissue, which first developed in 1983. There had previously been
criticism of the government because it had failed to develop self-sufficiency in Factor VIII and other blood products after an outbreak of hepatitis B among children at a special school in Hampshire in 1981. The development of self-sufficiency, critics argued, was being hindered by failure adequately to invest in the expansion of the Blood Products Laboratory at Elstree and by health service cuts that were preventing the regional health authorities from supplying the laboratory with the extra blood it would need.[33]
Andrew Veitch, "Extra £30 Million Could Have Kept Out AIDS," Guardian, May 3, 1983.
Heat-treated Factor VIII, introduced originally because of hepatitis, was available by 1984, but there were technical problems in getting it into mass production. In the spring of 1983, reports of the possibility of the transmission of AIDS through blood first began to appear in the medical press and thereafter in the press in general. In May 1983 a report in the Mail on Sunday on hospitals that were using "killer blood" noted that two men in hospitals in London and Cardiff appeared to be suffering from AIDS after routine transfusions for hemophilia.[34]Susan Douglas, "'Virus' Imported from U.S. Hospitals Using Killer Blood," Mail on Sunday, May 1, 1983.
Exact knowledge of the virus and its transmissibility was limited at this stage; and both the Health Department and the Haemophilia Society, the voluntary organization concerned, gave priority to encouraging hemophiliacs to continue with treatment.[35]Interview, Haemophilia Society worker, June 1989.
A DHSS spokesman was quoted in May 1983 as saying that "the advantage of using imported blood products far outweighs the 'slight possibility' that AIDS could be transmitted to patients through Factor VIII."[36]Quoted in John Hamshire, "Probe on Imports of 'Killer Blood,'" Daily Mail, May 2, 1983.
The department's initial reaction was to issue a leaflet, in August 1983, asking high-risk donors not to give blood. Heat-treated Factor VIII was not available from the United States until the end of 1984. Dr. Charles Rizza, an Oxford hematologist, was reported as saying that, until it was available, "I'm afraid our haemophiliacs are in the lap of the gods."[37]Stephen Cantle, "Haemophilia Alert over AIDS Factor," Doctor, May 12, 1983.
The domestic supply came on stream in the following year. By October 1985, too, a British HIV antibody test had been developed, and all blood donations began to be screened.By late 1984 the policy lobbies were beginning to coalesce into more established policy advisory mechanisms. The Department of Health began to set up administrative and policy advisory machinery focused on the new disease. The Expert Advisory Group on AIDS (EAGA) first met in January 1985 to advise the chief medical officer. Its members came from the clinical and scientific areas of new expertise on AIDS. A "social" group dealing with prevention and health education issues had a mixture of medical and gay activists. There was overlap between the groups. The expert group met seven times in 1985 and set up a number of associated groups: groups on counseling, screening, and resources; a
working group on health education in relation to AIDS; a group on AIDS and drug abuse; a subgroup composed of surgeons, anesthetists, and dentists; and groups on employment, renal units, artificial insemination, and immunoglobulin.[38]
Annual Report of Chief Medical Officer for 1985, p. 46; John Street, "AIDS Policy Advice in the UK" (forthcoming).
In addition to external links, the department developed its own internal policy machinery on AIDS. In 1985 a direct phone line for professional inquiries was linked to a special AIDS unit in the department. By 1985 AIDS had clearly become a departmental policy issue, with its emergent gay/medical/scientific policy community linked to the department. The policy lines that most clearly united the community were a stress on the need for urgent action and for public education to highlight the heterosexual nature of the disease rather than the "gay plague" angle of the popular press.1986–1987: Period Of Wartime Emergency
The governmental reaction until 1986 was primarily at a departmental level. But in 1986 AIDS was recognized as a clear political (in the sense of being a concern for party politicians) priority as well. No longer regarded as a problem for civil servants, volunteers, and medical and scientific experts, AIDS became a political issue—indeed, a national emergency. This reaction was marked in a number of ways, most notably by the formation in October 1986 of an interdepartmental Ministerial Cabinet Committee on AIDS, chaired by William Whitelaw, who was then deputy prime minister. The state of urgency was such that Whitelaw was on the steps of Number 10 Downing Street briefing the press on the (normally secret) meeting before the Cabinet Secretariat had finished typing the minutes.[39]
Peter Hennessy, Whitehall (London: Secker and Warburg, 1989).
The first full-scale debate on AIDS in the Commons was held in November.The health education campaign on AIDS was also enormously upgraded. Until 1985 the Terrence Higgins Trust had been the main source of information and advice on AIDS, but the Department of Health now began to expand its earlier series of leaflets and professional guidance into a public education campaign. In March 1986 a series of full-page advertisements appeared in the national press. These were widely criticized for poor presentation and lack of public impact, but in October, following the creation of the Whitelaw Committee, a public campaign costing twenty million pounds was announced, involving television as well as newspapers and wide distribution of a leaflet to all households in the country. The theme of the campaign—"Don't die of ignorance"—was the potential heterosexual spread of AIDS. This campaign
culminated in an AIDS week in the spring of 1987. There was cooperation, perhaps unparalleled since wartime, between two broadcasting companies, the BBC and ITV. One participant recalled, "If what was known about AIDS was true, then we had to educate the public fast. If it was left, it might be too late." The commitment of the broadcasting companies was wholly exceptional. After the sense of urgency had lessened, however, other considerations became uppermost: "People were beginning to ask, what next? Broadcasters by then had more or less given up editorial rights, were more or less acting as the government's mouthpiece. It made broadcasters reflect on the dangers of giving up editorial freedom and control—not because of AIDS but because of the dangers of being on the slippery slope to government control."[40]
Interview, media worker, January 1989.
In late 1986 the Health Education Council was replaced by a new Health Education Authority, a special health authority under much more direct political control and with specific responsibility for the public education campaign on AIDS. And early in 1987 the Commons Social Services Committee began an extensive series of meetings dealing with problems associated with AIDS. The potential for heterosexual spread of the disease was further underlined by the discovery of the virus among injecting drug users in Edinburgh. In the autumn of 1986 the report of the McClelland Committee on HIV in Scotland declared the prevention of HIV among drug users to be of the highest priority.[41]
HIV infection in Scotland: Report of the Scottish Committee on HIV Infection and Intravenous Drug Misuse (Edinburgh: Scottish Home and Health Department, 1986).
Everywhere, indeed, there was an air of emergency. Norman Fowler, then social services secretary, paid a visit to San Francisco with the chief medical officer early in 1987. Princess Diana's opening of the first purpose-built AIDS ward in the country at the Middlesex received widespread press publicity. The professional guidelines became a flood, and extra funding began to flow. AIDS became a target for increased resources rather than, as previously, a potential drain on existing finance. The £680,000 for AIDS services that had gone to the North East, North West, and South East Thames Regional health Authorities in 1985–86 rose to £2.5 million in 1986–87.[42]
Annual Report of Chief Medical Officer for 1985, p. 46.
The Medical Research Control received a million pounds from the Whitelaw Committee at the end of 1986 for research on AIDS. Early in 1987 a further £17.5 million was approved for AIDS research, £14.5 million of which was to go to a special Directed Programme on AIDS, aimed primarily at developing an AIDS vaccine. In wartime the pharmaceutical industries had collaborated. "It's a war-type coalition where everyone gets their jackets off and mucks in," commented a participant.[43]Interview, MRC research worker, November 1988.
Funding also went to the newly established Global Programme on AIDS, set up by the WorldHealth Organization. In 1987 over £200 million also went from the Overseas Developmental Administration to the European Community's developing program on AIDS.
AIDS was already defined as a problem at the policy community/departmental level before 1986. But how did it become defined as a problem at the political level? How did it become feasible for Conservative politicians to become closely involved in an issue which, in many of its aspects, would appear to have little appeal to the ethos of the Thatcher government? There are a number of possible explanations, none of them mutually exclusive and all warranting further investigation. There is an explanation based on personalities—either the concern of influential public and political figures or the particular involvement of politicians such as Norman Fowler at the DHSS. Fowler was regarded as an astute politician who could use an emergency such as AIDS to attract extra resources to his department. He has also been closely involved in the department's previous continuing activity on drugs, which in some respects—for example, the creation of an interdepartmental Ministerial Cabinet Committee and the development of a mass media campaign—prefigured many of the political responses to AIDS. Lessons from abroad—in particular the danger of heterosexual spread of the disease—also weighed heavily. Dispatches from the British ambassador in Kinshasa had drawn attention to the rapid heterosexual spread in Zaire and the possibility that Britain might share the same fate. The drugs issue in Scotland fueled those concerns. In 1986 the CMO's report pointedly noted that the current sex ratio of the disease in England and Wales was 33:1 (male to female), but in Africa it was 1:1 and in Scotland the ratio was different because of the higher proportion of intravenous drug abusers.[44]
Annual Report of the Chief Medical Officer of the Department of Health and Social Security for 1986 (London: HMSO, 1987), pp. 53-61.
The role of the media was also clearly important. As John Street has remarked, AIDS is perhaps the first "media disease."[45]
Street, "British Government Policy on AIDS." Obviously, other diseases—such as tuberculosis and influenza—have had considerable media salience. In AIDS, however, the political response was unusually (for Britain) determined by the media representations of the nature of the disease. Politicians derived their definitions of the problem directly from television in particular. See V. Berridge, "AIDS and Media Policy in Britain," Social History of Medicine, 3 no. 1 (1990): 144.
Particular media stories punctuate the early history of the disease—the death of the chaplain in Chelmsford prison in 1985, for example, and the death of Rock Hudson in the same year. Television programs that followed the pattern of the 1983 Horizon broadcast also appear to have made a particular impact—for example, the Panorama news analysis series devoted an entire program to AIDS in 1985. These programs were reacting on a particularly media-conscious government, with a general preference for mass advertising and market research and a reliance on particular media entrepreneurs. Just before the second mass media campaign was announced, there had been a spate of programs dealing with the AIDSissue, Weekend World among them; and there is evidence that these programs fueled the concern of government ministers.
But the pressure for emergency action also came in traditional bureaucratic ways, from the internal workings of the Department of Health and through the role of both medical and generalistic civil servants. For them, too, as one commented, AIDS just "gradually bubbled up."[46]
Interview, senior civil servant, 1988.
The role of Sir Donald Acheson has already been mentioned. AIDS was, in that context, essentially part of a revival of infectious disease since the 1970s, with outbreaks of salmonella and of hepatitis B as well as the arrival of AIDS. It also was part of the apparent revival of public health medicine, which had been severely downgraded in the postwar period. Acheson was chairing a committee on the public health function within the department at the same time that he was chairing the Expert Advisory Group on AIDS. This committee, which reported in January 1988, placed great emphasis on the role of AIDS in legitimating the revival and extension of public health powers. The legacy of Sir John Simon and the nineteenth-century "heroic phase" of public health was again to the fore; this committee's report, too, was remarkable for its historical consciousness. Acheson also appears to have had the support of the policy and generalist side of the Department of Health and of the civil servants in the Cabinet Office. An interdepartmental committee of officials preceded the Cabinet's interdepartmental political committee. In this sense, the period of national emergency conformed to a fairly classic model of bureaucratic policymaking.But the public context of the political reaction should also be recognized. Governmental activity took place against a background of increasing public fear, which should be distinguished from the "moral panic" and anti-gay feeling to which other writers have drawn attention. This kind of panic undoubtedly existed—in particular in the pages of the popular press, with its talk of "gay plague." But there was also a public fear of contagion. A senior London probation officer recalled, "If we had an HIV-positive person in those days, we'd clear the court."[47]
Interview, senior probation officer, 1988.
In the letter pages of the Guardian and the British Medical Journal in the early months of 1987, the safety of kissing was debated by Dr. John Seale, a Harley Street consultant; Sir Donald Acheson; and Dr. Joe Smith, director of the Public Health Laboratory Service. Although the virus had been discovered and scientific knowledge about transmission was proceeding apace, knowledge was not finally constructed and the boundaries with popular knowledge were undefined. A psychologist recalled: "X , consultant at Y hospital, came to see us at the beginning ofthe epidemic. I asked about transmission through sexual intercourse with women. That was seen as no risk then; now it's high risk. There were the arguments about deep kissing and how you'd need a liter of saliva. … Some doctors in Italy think you can and if it is the case, it's very serious. How do you know? There's sloppy talk—and no acknowledgment of doubts. They're full of certainties, and these change."[48]
Interview, hospital psychologist, February 1989.
Scientific and popular perceptions of the disease appeared to have equal credibility; science itself, early on, was only folklore in relation to AIDS. There was in a sense a popular decline in confidence in the authority of science and of official pronouncements about the disease. How far this decline impinged on the emergency policy reaction remains to be investigated. But certainly the vastly expanded health education campaign appears to have achieved an important, if partial, transformation in public knowledge about the virus and its means of transmission.[49]Department of Health and Social Security, AIDS: Monitoring Responses to the Public Education Campaign (London: HMSO, 1987).
1988 Onward: Normalization Of The Disease
In one sense, the wartime reaction was relatively short-lived. Some of the leading politicians moved on. Norman Fowler left the DHSS in 1988; William Whitelaw relinquished the chairmanship of the Cabinet Committee on his retirement in the same year; Tony Newton, who as minister of health had taken a particular interest in the AIDS issue, also moved on. Some witnesses to the Social Services Committee demanded an expansion of the wartime model of response. A memorandum from the Terrence Higgins Trust urged a national body to control and integrate all services, both voluntary and statutory.[50]
Social Services Committee, Problems Associated with AIDS (Memorandum Submitted by Terrence Higgins Trust), 2:101. The original memorandum, submitted by Michael Adler of the Middlesex Hospital, also argued along these lines, but Adler withdrew this suggestion when he gave evidence to the committee.
But Britain did not appoint a minister for AIDS or an AIDS supremo. The first report of the government's Advisory Council on the Misuse of Drugs—which argued for an extension of the harm-minimization approach to drugs and in particular for the establishment and extension of needle exchange projects—almost missed the emergency boat when it was presented to ministers in the autumn of 1987. It took ministers until March 1988 to decide on the publication of the report because of doubts within the government about the measures proposed.[51]Department of Health and Social Security, AIDS and Drug Misuse, Part 1 (London: HMSO, 1988).
The emergency reaction had become less appropriate.In the new phase, which began around 1988, AIDS gradually came to be perceived more as a "normal" nonepidemic chronic disease, and reactions to it became professionalized and institutionalized. Clearly, however, the high-level reaction has not disappeared. In January 1988, for example, the British government and the World Health Organization
jointly presided over a World Summit of Ministers of Health on programs for AIDS prevention. Delegates from 148 countries, three-quarters of them ministers, attended; 1988 was declared the year of communication and cooperation on AIDS.[52]
Annual Report of the Chief Medical Officer of the Department of Health and Social Security for 1987 (London: HMSO, 1988), p. 8.
But in other ways the period of wartime emergency was over. After the departure of Whitelaw, Fowler, and Newton at the Department of Health, no government minister was quite so publicly associated with the issue. The meetings of the Cabinet Committee were no longer publicized, and the committee itself was disbanded in 1989. Some of the earlier key committees were reconstructed, and some of the early actors became less central in policy development. "EAGA was a force in developing policies very quickly. … Now most are developed in the Department of Health and rubber-stamped," recalled an ex-member.[53]Interview, consultant, February 1989.
The policy community around AIDS was visibly changing to accommodate new experts; it, too, was part of the process of normalization. "The new people represented institutions—but then they all became experts."[54]
Interview, scientific research worker, February 1989.
The volunteer ethos remained important, but it was a rather different type of voluntary sector that became involved in AIDS. The Terrence Higgins Trust continued to expand after some internal changes. But it lost its place in the policy sun and became more marginal to policy development. It was to a degree displaced by a voluntary sector that was partly government funded—as exemplified in the establishment of the National AIDS Trust in 1987. (An earlier U.K. AIDS Foundation had failed to get off the ground in 1986 and had fallen apart amid recriminations.) "It's all become much more mainstream," commented one participant.[55]Interview, voluntary-sector worker, January 1989.
The normalization process was at work in the research arena, too. The Medical Research Council's AIDS Committee was re-formed—"The old-boy network of British science" moved in.[56]
Interview, scientific research worker, February 1989.
The Economic and Social Research Council developed an AIDS program that did something similar for British sociology: established non-AIDS/non-gay networks began to develop research. One early actor took these developments phlegmatically: "We have to learn that AIDS is everybody's business. … No one can be Mr. AIDS. No one can hang on to AIDS as their own. A lot of us find that difficult if we were involved from the very beginning. It's very hard to let other people get in on the turf."[57]Interview, consultant, February 1989.
Normalization and institutionalization were also demonstrated in the way that AIDS became seen as a long-term issue for services and treatment, rather than an emergency issue. In 1988 the Cox report on the short-term prediction of HIV infection revised figures downward:
"Continued exponential growth would lead to about 10,000 new cases diagnosed in 1992. While this cannot be totally excluded, there are a number of reasons for expecting slower growth and predictions in the range of 2,500–5,000 are more likely."[58]
Department of Health/Welsh Office, Short-Term Prediction of HIV Infection and AIDS in England and Wales: Report of a Working Group (London: HMSO, 1988), p. 41.
Once the threat of epidemic heterosexual spread had passed, AIDS became a normal part of the public health administrative machinery established after the Acheson report. In each health district a standing action group accountable to the Health Authority through a nominated community physician was now responsible for coordinating the relevant services.[59]Annual Report of Chief Medical Officer for 1987, p. 125.
AIDS care quickly moved from the specialist to the community care model, with a conference in 1987 on community care followed by the setting up of a Departmental Working Party on the subject. When the British Medical Association AIDS Foundation began to produce videos on the subject aimed at general practitioners, AIDS moved into the primary care arena. The stress on "early treatment"—the use of Zidovudine in asymptomatic disease—made clear that AIDS was regarded as a chronic disease, encompassed within a conventional spectrum of medical reaction. "AIDS will become a chronic disease requiring maintenance doses throughout life, but consequently less debilitating than multiple sclerosis," predicted one observer.[60]Interview, gay journalist, November 1988.
The discourse on AIDS began to emphasize AIDS in the spectrum of chronic rather than infectious or sexually transmitted disease; "a disease like diabetes" was one comment, with AZT as a latter-day insulin. By 1989 AIDS still raised some burning issues—notably the debates, in particular in the gay community, about the ethics of clinical trials and the ethical and practical issues surrounding testing. But other issues—for example, housing and care in the community—were common to many other conditions.[61]On housing see Raynsford and Morris, Housing Is an AIDS Issue (London: National AIDS Trust, 1989).