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.