HIV/AIDS

Question 1

What do AIDS and HIV stand for?

Answer 1

Acquired Immune Deficiency Syndrome

Human Immunodeficiency Virus

Question 2

Gilman (1987), Social construction of AIDS

Answer 2

People have been stigmatized (and destroyed) as much by the “idea” of AIDS as by its reality.

Question 3

Gilman (1987), Iconography of disease

Answer 3

Icons of disease appear to have an existence independent of the reality of any given disease

Disease is thus restricted to a specific set of images, thereby forming a visual boundary, a limit to the idea (or fear) of disease

It is in the world of representations that we manage our fear of disease, isolating it as surely as if we had placed it in quarantine

Question 4

AIDS cases first identified (though not understood as AIDS)

Answer 4

1979 Alvin Friedman-Kien of New York University Medical Center identified a group of patients suffering from a rare form of cancer, Kaposi’s sarcoma (KS), which presents striking symptoms, bluish or purple-brown lesions on the skin
Normal course of the disease seldom fatal, but these young patients were dying within eight to twenty-four months of their diagnoses

Question 5

Centres for Disease Control and Prevention (CDC), initial attempts to construct image of the patient

Answer 5

• living in large urban areas (New York, Miami, Los Angeles, and San Francisco) - all young men
• all homosexual

Morbidity and Mortality Weekly Report (MMWR), June 5 1981 - noted the patients’ sexual orientation, and more importantly its “quality”: ‘Two of the
five [patients] reported having frequent homosexual contacts with various
partners’

Question 6

Emergence of gay-related immunodeficiency (GRID) label

Answer 6

first quarter of 1982

Question 7

Gilman 1987, initial understanding of AIDS

Answer 7

specific subset of the larger category of sexually transmitted diseases (STDs), as a disease from which homosexuals suffered as a direct result of their sexual practices and related “life-style” -for example, the use of “poppers”

fact that AIDS appeared in the late 1970s served to link the disease to two unrelated social concerns: first, the perception of an increase in STDs in the US (following a period of perceived decline), signalled in 1975 by the declaration of the National Institute for Allergy and Infectious Diseases that research into STDs was its number one priority; and second, the growth of public awareness -at least in large urban areas - of the gay liberation movement, which followed in the wake of the Stonewall riots in Greenwich Village in 1969

AIDS was characterized not as a viral disease, such as Hepatitis B, but as a sexually transmitted disease, such as syphilis.

Question 8

Appearance of syndrome among groups such as haemophiliacs and IV drug users first recorded by the MMWR

Answer 8

late 1982

Question 9

Gilman (1987), AIDS and Syphilis

Answer 9

Stresses link between iconographies of AIDS and syphilis:

appropriation of the iconography of syphilis for the representation of people with AIDS is not random; it is, rather, a result of the perception that the sexual orientation of people with AIDS was determinant, and that these people suffered from a sexually transmitted disease

“taming” of syphilis and other STDs with the introduction of antibiotics in the 1940s left our culture with a series of images of mortally infected and infecting people suffering a morally repugnant disease -without a sufficiently powerful disease to function as the referent of these images.

Question 10

Gilman (1987), Syphilis iconography over time

Answer 10

August 1, 1496, the first visual representation of the syphilitic appeared in a broadside written by Theodoricus Ulsenius and illustrated by Albrecht Diirer
- portrayed as a victim of the signs of the zodiac, which determine his affliction. The syphilitic is seen as isolated, visually recognizable by his signs and symptoms, and sexually deviant

Enlightenment - image of the syphilitic shifts from male to female, and shift from victim to source of infection. Prostitute/ seductress as source of pollution

by the nineteenth-century “vice” has become “disease,” seduction has become infection

Question 11

Gilman (1987), AIDS iconography over time

Answer 11

In a photograph that appeared in the New York Times on December 23, 1985, we see an image of the PWA as a patient isolated from the supposed act of healing (parallel to the images of the exemplary syphilitic). The sense of physical distance is palpable

1985 (and subsequently), the New York Times was full of articles on the anxiety of health workers treating people with AIDS.

This is a homosexual male, both victim and cause of his own pollution. Already feminized in the traditional view of his sexuality, the gay man can now also represent the conflation of the images of the male sufferer and the female source of suffering traditionally associated with syphilis.

association of the “AIDS victim” with the traditional iconography of melancholy is an extraordinarily powerful one; it reappeared as the first illustration for an update on AIDS in the popular scientific journal Discover in September 1986

But the Discover photograph not only draws the analogy with the despair of impending death. Through a broader analogy extended to the “general population,” which is seen to suffer from “unwarranted” AIDS phobia, it in- tends the PWA to function as a stand-in for the mental illness (read: fearful fantasy) of an entire nation

AIDS is perceived as endemic to cities, which have traditionally been seen as harborers of disease and degeneracy.33

Thus arises the seemingly natural association among three quite distinct groups perceived as corrupt city-dwellers: homosexuals, IV drug users, and Haitians. And purity lives where nature dominates: on the farm and in the small town

Question 12

Gilman (1987), AIDS and race/ geography

Answer 12

Blacks were deemed to be at risk because of their perceived sexual difference- their “hypersexuality”-as well as their “sociopathic” use of drugs. Black sexuality, associated with images of sexually transmitted disease, became a category of marginalization, as it had in the past. But in the 1980s, after the intolerable state of blacks in this country was made visible by the civil rights movement in the ’60s and ’70s, it was no longer so easy to locate the source of disease among American blacks

Instead, the source of pollution was perceived to be foreign blacks, black Africans and Haitians, and thus American “liberal” sensibilities were assuaged even while speculations about the origin of AIDS continued to be determined by American racist ideology.

withdrawal of the “risk group” label from Haitians followed a period of severe persecution. To be Haitian and living in New York City meant that you were perceived as an AIDS “carrier.”

The pattern of infection in the US, where the disease existed only among marginal groups (including blacks), was understood as characterizing a later phase of the disease’s history. It was only in “higher” cultures, such as the United States, that the disease was limited to such specific groups as could be immediately and visually identifiable.

transmission of HIV in black Africa has its roots in the imposition of models of Western medicine. The status of Western medicine and its association with inoculation is so high that no medical treatment, even by indigenous medical practitioners, is considered complete without an injection.32 Due to the prohibitive cost of needles and syringes, blood is passed from patient to patient as the needle is used and reused. It is thus not the fantasized perverted nature of black sexuality that is at the core of the transmission of the disease in Africa

AIDS is popularly perceived in Europe as born in the USA

For the Soviets the geographic origin of the disease is also the US: the HIV virus was man-made by the biological warfare specialists at Fort Detrick, Maryland, in conjunction with the scientists at the CDC.
This attempt to place the blame for AIDS on the United States worked only until the spring of 1987, when the Soviets, in the climate of glasnost, admitted that they, too, had indigenous cases of the disease.
1985 and 1986, “orthodox” Soviet view was that homosexuality-and thus AIDS-was a
pathological reflex of the late forms of capitalism which would (and did) vanish once the Soviet state was created

Question 13

Gilman (1987), Potency of AIDS stigma

Answer 13

permeated social categories ordinarily exempt from stigma. In 1985, two community school boards in Queens sued the New York City Board of Education in order to exclude a seven-year old child, diagnosed as having AIDS, from the school system

Question 14

Gilman (1987), the psychological importance of stigma

Answer 14

It clearly defines the boundaries of pollution, limiting the risk to the homosexual (and those other groups now stigmatized), and thus confines heterosexuals’ fears about their own vulnerability

Question 15

Gilman (1987), shifting public understandings of AIDS late 1980s

Answer 15

By the spring of 1987 the public understanding of AIDS as a disease not limited to specific marginal groups had begun to grow. The statement of Surgeon General C. Everett Koop in support of extending information about condoms, together with increased media attention to heterosexual transmission, meant that by March 1987 the majority of those tested in the public AIDS clinics in New York and San Francisco were heterosexuals.

However, shift -from male victim to female (outside limits of social respectability) as source of pollution - clearly repeating the history of the iconography of syphilis.
in a cartoon of mid-March 1987, J. D. Crowe of the San Diego Tribune depicted the source of heterosexual transmission as a group of prostitutes proffering death.

Question 16

Fee, Krieger (1993), significance of historical study of AIDS

Answer 16

offers a complex and vivid example of the ways in which people create multiple, contested explanations of health and illness.

Question 17

Fee, Krieger (1993), first of three clashing paradigms of AIDS

Answer 17

conceived of primarily as a “gay plague,” by analogy with the sudden, devastating epidemics of the past

epidemiologists struck by its seemingly exotic preference for young, homosexual men; they therefore searched for causes in the behaviors or “life-styles” common to gay men

looked for risk factors prevalent in this “risk group” and indicted life in the fast lane, including “promiscuity,” “poppers” (amyl nitrate), and anal sex.

researchers at first ignored the cases of AIDS that did not fit the gay plague model

however, shift to “4-H risk groups”: homosexuals, Haitians, hemophiliacs, and heroin addicts

In popular perception, all members of the identified risk groups were seen as potentially contagious; from there it was but a short step to perceive those populations as “responsible” for AIDS.

This in turn led to the prevalent media descriptions of the “innocent victims” of disease, such as hemophiliacs and children; by implication, the others were “guilty” culprits.

unmediated associations between homosexuality and disease that appeared in the declarations of rightwing ideologues, who lost no opportunity to castigate homosexuals in the name of “family values” and the “American way of life.”

In 1983, the identification of HIV, the AIDS virus, led to a new phase of the epidemic, in which AIDS was clearly characterized as an infectious disease.”

Once the virus was identified, scientists tended to lose interest in the social factors accompanying transmission. Theyinstead turned to laboratory studies of the virus

virus was perceived as something easy to catch; the idea that AIDS was caused by a virus, along with vague announcements about bodily fluids, may well have increased fears of casual transmission

many people in the United States simultaneously embraced scientific, traditional, and folk explanations of AIDS, with little sense of contradiction. Ideas of “magical contagion” led otherwise well-informed people to fear contact with AIDS patients. For example, one study found that most people would refuse to wear a sweater previously worn by an AIDS patient

scientific search for biomedical risk factors, agents, and other proximate causes of disease had failed to satisfy the broader need for ultimate explanations-the “why” and not just the “how” of disease causation.

Among health professionals, the identification of HIV seemed to clarify strategies for AIDS prevention. It shifted attention away from the early risk-group designations and highlighted the importance of risk behaviors, thus focusing attention on specific acts rather than on sexual identities.

Condoms advocated.
Opposed by right wing set against nonmarital sex.
Providing individuals with clean needles was problematic because many people perceived the distribution of needles and bleach as a possible encouragement of drug use.

Many African Americans were convinced that these programs were part of a long-standing, White-led genocidal policy against Blacks, and they called instead for drug treatment programs and jobs. By contrast, many conservatives simply wanted drug addicts thrown into jail.

Prevention methods to curtail blood transmission were similarly framed in individualistic terms. People were urged to refrain from donating blood if they had any reason to believe they were at risk for HIV infection; people needing blood were encouraged to store their own blood prior to surgery or to collect blood from family
and friends. Blood was now increasingly seen as an individual possession.

Ultimately, the identification of HIV and the discovery of a blood test for HIV antibodies made possible the traditional approach to infectious disease control - identification of those infected, followed by isolation, quarantine, or other societal action to cut off transmission - and led to battles over testing immigrants, blood donors, and individuals considered to be at risk.

From the biomedical and epidemiological point of view, if individuals knew their serostatus, they would more readily change behaviors

However, this logic ignored the complex power dynamics of sexual relationships. Did not consider the social reality of discrimination in health insurance, jobs, and housing that faced those diagnosed as HIV positive

also ignored the ethical problem that, in the early stages of the epidemic, no therapy was available; testing exposed the individual to considerable social risk while offering no medical benefit.

Question 18

Fee, Krieger (1993), gay and lesbian communities’ activism

Answer 18

rejection of concept of ‘innocent’/ ‘guilty’ AIDS victims and divisions caused by categorisaiton of seropositive and seronegative

These communities had a recently formed, self-conscious sense of their social and political identity, forged in part out of a successful struggle with the medical establishment over the psychiatric definition of homosexuality as a pathological disorder.

The epidemiologists’ apparently neutral categories were perceived as an attempt to resurrect the earlier biomedical construction of homosexuality as a sickness

Question 19

Identification of HIV

Answer 19

1983

Question 20

Fee, Krieger (1993), second of three clashing paradigms of AIDS

Answer 20

In the second paradigm, AIDS was normalized as a chronic disease to be managed medically over the long term

predictions about the massive spread of AIDS throughout the entire US population-the threatened “heterosexual explosion”-had not been fulfilled. Indeed, statisticians were revising downward the early estimates of the number of HIVinfected persons.

Researchers and health care professionals shifted the focus of their concern from etiology to pathology and from prevention to potential therapies. The development of palliative treatments such as azidothymidine (AZT) for people with AIDS (and, later, for those who were HIV positive) placed new emphasis on health services, as reflected in the growing numbers of dedicated AIDS units for both inpatient and outpatient care

AIDS was becoming just another expensive disease, like cancer, with which the medical system could cope

When first conceived of as an infectious chronic disease, AIDS was likened to such diseases as tuberculosis and syphilis

Funding now flowed for studies of the natural history of AIDS, AIDS pathology, and clinical trials.
Few research dollars were expended on studies designed to improve prevention. The US Congress, for example, canceled two national surveys of sexual behaviour

Testing for HIV was now encouraged more as a means of drawing infected people into early treatment than as an incentive to modify behavior.

People with AIDS explored alternative therapies and unconventional drugs

Many rejected the exclusively tragic imagery of dying in favor of diverse representations of living with AIDS. Their work incorporated the voices, faces, and experiences of people with AIDS,

As AIDS touched every aspect of public life, from art to politics to sports, increasing popular awareness of the disease led to growing acceptance of people with AIDS. When the basketball star Magic Johnson announced he was HIV positive, he was wamily applauded for his honesty and bravery.

language of guilt was less often applied to people ill with AIDS, but the distinction between innocent and guilty “victims” lingered, as seen in the general hysteria over infected health care workers

Question 21

Fee, Kreiger (1993), model of chronic disease

Answer 21

chronic diseases are debilitating and often fatal conditions that are slow to develop, persist for many years, and require long-term management

Research focuses on disease mechanisms, usually at the cellular level, and increasingly concentrates on genetic determinants. Based on this understanding of disease, health interventions most commonly emphasize screening, early detection, and treatment, not primary prevention

Question 22

Fee, Krieger (1993), Lack of med knowledge about AIDS

Answer 22

One study found that more than 80% of a national sample of primary care physicians said lacked info about AIDS

Surveys found that most people obtained information about AIDS from the mass media, family, and friends, and that fewer than 10% had ever discussed the disease with their physician.

Question 23

Fee, Kreiger (1993), successes of AIDS activism

Answer 23

Reflecting their success and also the growing understanding of the progression of HIV disease, the Centers for Disease Control revised its diagnostic definition of AIDS in 1991 to include T-cell counts and, in 1992, to include cervical cancer and pulmonary tuberculosis among HIV-associated diseases.

Food and Drug Administration agreed to streamline its procedures for drug approval.

Reflecting the clash between the first and second paradigms of AIDS, other AIDS activists questioned the singleminded focus on treatment and emphasized prevention.

AIDS activists initially forced a major shift in the old public health approach to infectious disease control: for example, constraints on or quarantine of those infected.

political strength of the gay movement engendered within public health circles a new sensitivity to issues of stigma

Question 24

Fee, Krieger (1993), critique of chronic disease model

Answer 24

In accepting the chronic disease model’s emphasis on pathology and treatment, many scientists and health care professionals have lost sight of the fact that AIDS is both infectious and preventable

Although the incidence rates of a few cancers (e.g., stomach cancer) have declined, often for unknown reasons, the rates for many other types of cancer are stable or increasing.

While preventive interventions based on the chronic disease model have stressed individually oriented dietary and behavioral modifications, it is unclear how much health behaviors have really altered.

Question 25

Fee, Krieger (1993), critique of infectious disease model

Answer 25

reputation for success in controlling epidemics was overinflated. Historians have argued that much of the decline in infectious diseases predates scientific medicine

Question 26

Fee, Krieger (1993), critique of biomedical models

Answer 26

Ultimately, the biomedical model embodies an approach to analyzing disease that is fundamentally individualistic and sanctions only the physicians’ or scientists’ point ofview. Profoundly ahistorical, it contains within itself a dichotomy between the biological individual and the social community, and then it ignores the latter

The only preventive actions seriously suggested are those that can be implemented by solo individuals

these attitudes implicitly accept social inequalities in health and fail to challenge the social production of disease.

Question 27

Fee, Krieger (1993) third of three clashing paradigms of AIDS

Answer 27

AIDS as a Colletive, Chromic Infectious Disease and Persistent Pandemic

AIDS is, in essence, a social disease

public health must initiate two-way learning process

One study study found that injection drug users were more influenced by their material circumstances, such as access to clean needles and a private setting for drug use, thanby their perceptions of risk of contracting AIDS from dirty needles.

Recognizing the importance of basing health education campaigns on what people really believe, researchers have begun to document the plurality of popular conceptions about health and disease causation in order to make AIDS education materials more compatible with people’s own modes of understanding.

Health education campaigns within the gay community have been creative-and controversial-in attempting to eroticize safer sex

Question 28

Fee, Krieger (1993), AIDS in Central African, Latin American and Southeast Asian countries

Answer 28

IDS can be characterized neither as a peculiarly gay plague nor as a chronic disease; most people with AIDS are heterosexual and few can afford the luxury of extended treatment

Question 29

Berridge (1992), Importance of AIDS for status of History

Answer 29

Historians have, until recently, played a relatively small role in researching the history of post-war science and medicine in its policy context.

The advent of AIDS as a scientific, medical and policy issue - and also as an epidemic seen to have historical significance - has brought with it a reassessment of the role and significance of historical work on the post-war period.

Question 30

Berridge (1992), early historical input on AIDS

Answer 30

focused primarily on historical parallels from previous centuries or on the history of the regulation of sexually transmitted diseases

Question 31

Berridge (1992), more recent historical input into AIDS

Answer 31

AIDS itself has emerged as a historic occurrence and a subject for historical investigation. Grmek in his History of AIDS has brilliantly elucidated the pre-history of AIDS as a disease and assessed competing explanations of its origin

Question 32

Berridge and Strong (1991), Overview of AIDS in Britain, 1980s

Answer 32

years from 1981 to 1986 were a time of surprise and initial horror.’ This period saw the apparently sudden outbreak of the disease in several widely differing groups, rapidly gathering public alarm, growing stigmatization and, on the policy side, relatively little official action. Behind the scenes, however, there was considerable openness to new actors, the establishment of new sorts of alliance and a good deal of policy development from below.

This phase was succeeded in 1986-7 by a brief period of war-time emergency in which politicians publicly and dramatically intervened, their actions being reinforced by a voluntary, if temporary, mobilization of the mass media. AIDS was officially established as a high level national emergency

from 1987 onwards, these two initial phases have been followed by a third phase of normalization of the disease and of the public reaction to it.

Question 33

Berridge and Strong (1991) - chronic or infectious?

Answer 33

AIDS has become another chronic disease

Question 34

Berridge and Strong (1991), differences between AIDS in UK and AIDS in US

Answer 34

disease appeared earlier there, has been on a far greater scale and has generated considerably more public controversy.

Question 35

Berridge and Strong (1991) on material on AIDS composed in early years of the crisis -

Answer 35

Much of the material under review was written during the early years of the epidemic, a fact which gives the great part of it a real sense of crisis and urgency

No haemophiliacs or injecting drug users have openly joined the academic fray, but gay men have played a prominent role. Much of the work aims to contribute directly to policy and some of it is passionately and personally committed.

Question 36

Berridge and Strong (1991), early historical input on AIDS

Answer 36

Initially, AIDS was a ‘new’ policy area where established interests and policy lines had not yet ossified. In an open situation, history could play a practical rather than symbolic role.

The initial input focused on three broad areas; the role of epidemic disease in past societies, in particular the association between disease and ‘moral panic’, or disease and stigmatized minorities; the historical record, in particular the tradition of voluntarism in the area of sexually transmitted diseases, notably the controversies around the Contagious Diseases Acts in Britain in the nineteenth century; and more general questions of public health policy and the means of carrying them out, such as quarantine or notification, thus contributing to the classic debate between the common good and individual rights

Historians of cholera and other epidemics found themselves catapulted into a round of AIDS conferences which actively sought to hear the ‘lesson of history’. The annual international AIDS conference, a jamboree of mammoth proportions, developed a history strand

In Britain, the preceding historical interests of two key actors, Professor Michael Adler at the Middlesex Hospital and Sir Donald Acheson, Chief Medical Officer at the Department of Health, ensured that the historical record was brought into the policy debates. The reports of the Chief Medical Officer in the early AIDS years were consciously historical

In the British context at least, the historical arguments appear to have had some degree of policy impact. Roy Porter’s editorial in the British Medical Journal in 1986 headlined ‘History says no to the policeman’s response to AIDS’, attracted a barrage of interest.5 His type of argument, drawing on analogies from the history of public health in relation to civil liberties and on historical examples of the control of sexually transmitted diseases, also entered into the policy area.

Sir Donald Achcson in his evidence to the House of Commons Social Services Committee enquiry into AIDS in 1987 cited the historical record as a prime reason for avoiding a punitive response to AIDS.

Question 37

Berridge and Strong (1991), historical input in different countries

Answer 37

In different national contexts the ‘lesson of history’ had a differential impact. In the United States, for example, debate around the issues of compulsion and confidentiality arose from differing historical perspectives. The ‘lesson of history’ was mediated by different national cultures

Question 38

Berridge and Strong (1991), shift in history’s contribution into AIDS

Answer 38

AIDS is no longer in many senses an open policy area. The difference is conceptualized in the contrast between the Millbank collection in 1986, full of historical parallels, and the Daedalus issue in 1989 where only one article, by Charles Rosenberg, makes direct reference to the historical perspective.

Rosenberg’s piece, too, is distinctly post-heroic in tone. It notes the range and stages of policy choices in an epidemic

The historical input mirrors the normalization of AIDS itself. Chronic, not epidemic, disease is the focus.

Question 39

Berridge and Strong (1991), criticisms of historians’ initial attempts to be relevant to AIDS crisis

Answer 39

Whiggish assumption that there was indeed a ‘lesson of history’

implied history was incontrovertible ‘fact’, rather than a mass of differing interpretations

Question 40

Randy Shilts’s And the Band Played On (Berridge and Strong’s account

Answer 40

catalogue of blame—for the deaths of many who, he argues, died unnecessarily of delay and prejudice. He points the finger at the US media and public in general, little concerned about a ‘gay disease’; and at the Reagan administration, concerned only with tax cuts, not health funding. But in particular, he castigates two communities—the medicoscientific one, caught up in internal rivalries and politicking to the degree that advancement of reputations appeared more important than a life or death race against disease; and, most controversially, sections of the gay community itself, whose reaction was based on the need to defend the gains of the 1970s, in particular the ideology of sexual liberation, rather than to combat the disease. Gay political power in San Francisco initially ensured the continuance of the virus-spreading bath houses instead of propagating the notion of safe sex.

Question 41

Berridge and Strong (1991), AIDS and sociology

Answer 41

bulk of social science research funding has gone to sociology

large number of primarily quantitative projects have been funded by research councils, government departments and charities

most of the research has been focused on practical rather than sociological problems. AIDS has brought a revival of positivist social science; and conceptual development has played a very minor part

main empirical focus has been the social dynamics of transmission of both the virus and health education

Question 42

Berridge and Strong (1991), criticisms of cultural studies work on AIDS

Answer 42

Many authors write as if labelling and metaphor were diseases which could somehow be cured through appropriate linguistic therapy. Most sociologists, however, would hold that these features arc intrinsic to language use.

often surprisingly little reference to the considerable body of sociological research into stigma and the natural history of social problems and, conversely, far too much stress on the fragile notion of ‘moral panic’.
The idea needs careful separation from genuine panic and fear

Question 43

Dennis Altman’s AIDS and the New Puritanism (1986) (Berridge and Strong’s account)

Answer 43

• consciously written as a ‘contemporary history’, combining both sociological and historical perspectives
• particularly good at setting the gay response to AIDS in its immediate historical context. He shows, for example, the way in which the establishment of Gay Men’s Health Crisis in New York built on a decade of gay organization and pre-existing gay health networks
• notes the positive as well as negative effects AIDS has had on the gay community: the way it has created a new professional gay cadre based on expertise rather than movement experience or popular representation—a fact which has led to a much greater degree of institutional recognition.
• comments about research are also perceptive: the way, for example, gay social scientists have used research to work through their own feelings; or the way AIDS has served to develop the links between commerce and scientific research

Question 44

Fox, Klein, Day (account of Berridge and Strong)

Answer 44

first article to challenge the conventional activist line

Neither right-wing ideology nor public opinion had much effect. Much noise was made, particularly in the USA, but policy, as in almost all health arenas, was still dominated by the traditional, liberal, bio-medical elite

Question 45

Berridge and Strong (1991), conventional activist line on AIDS crisis

Answer 45

(to be found in both Shilts and Weeks) AIDS was a heaven-sent opportunity for the populist New Right governments of the 1980s to roll back the moral frontier. On this thesis, national action was scandalously slow because governments did not care so long as merely gay men were affected. Serious intervention occurred only when the threat to the heterosexual population became clear.

Question 46

Berridge and Strong view on Fox, Klein, Day

Answer 46

underestimate the openness and fluidity of AIDS policy-making in the early stages of the epidemic.

Question 47

What distinguishes history from other disciplines in approach to AIDS? (Berridge and Strong, 1991)

Answer 47

Three broad areas:

• the use of a chronological approach
• a sense of continuity as well as change
• within an overall chronology, a synthetic ability to interweave different levels of interpretation.

Question 48

Rosenberg (1989), modern use of term ‘epidemic’

Answer 48

Use the term in a variety of ways, most of them metaphorical, moving it further and further from its emotional roots in specific past events.

In the mass media every day, we hear of “epidemics” of alcoholism

intent is clear enough: to clothe certain undesirable yet blandly tolerated social phenomena in the emotional urgency associated with a “real” epidemic

Question 49

Rosenberg (1989), defining aspects of epidemics

Answer 49

• fear and sudden widespread death
• episodic quality. Event, not a trend
  immediate and widespread response. It is highly visible
• Thus, as a social phenomenon, an epidemic has a dramaturgic form
• takes on the quality of pageant, mobilizing communities to act out proprietory rituals that incorporate and reaffirm fundamental social values and modes of understanding. Thus, illuminate fundamental patterns of social value and institutional practice

Question 50

Rosenberg (1989) epidemic Act I: Progressive Revelation

Answer 50

most communities are slow to accept and acknowledge an epidemic.

to admit the presence of an epidemic disease was to risk social dissolution

Only when the presence of an epidemic becomes unavoidable is there public admission of its existence

Question 51

Rosenberg (1989) epidemic Act II: Managing Randomness

Answer 51

Collective agreement on explanatory framework, in which epidemic’s dismaying arbitrariness may be managed, may be seen as the inevitable second stage in any epidemic

For most previous centuries that framework was moral and transcendent; the epidemic had to be understood primarily in terms of man’s relationship to God

Since at least the sixteenth century, however, such spiritual assumptions have always coexisted with, and gradually yielded in emphasis to, more secular and mechanistic styles of explanation

When threatened with an epidemic, most men and women seek rational understanding of the phenomenon in terms that promise control, often by minimizing their own sense of vulnerability.
Such consolatory schemes have always centered on explaining the differential susceptibility of particular individuals

Particularly important was belief in the connection of volition, responsibility, and susceptibility

nineteenth-century debates about the cause of epi demics were in actuality rather more nuanced. Epidemics did tend, for example, to be associated with place of residence and occupation as well as behavior. And environmentalist, and thus determinist and morally exculpating, implications were there to be drawn

layman’s almost universal association of epidemic with contagious disease played a parallel role. At least a presumed knowledge of the epidemic’s mode of transmission could provide a measure of understanding and thus promise control

Question 52

Rosenberg (1989), epidemic Act II, Negotiating Public Response

Answer 52

One of the defining characteristics of an epidemic is in fact the pressure it generates for decisive and visible community response.

An epidemic might in this sense be likened to a trial, with policy choices constituting the possible verdicts

the imposition of a quarantine, let us say, or the burning of tar to clear an infected atmosphere, the gathering of men and women in churches for days of fasting and prayer, all play a similar role - the visible acting out of community solidarity.
These collective rituals affirm belief - whether in religion, in rationalistic pathology, or in some combination of the two - while those beliefs promise a measure of control over an intractable reality.

picture of a consistent if occasionally awkward coexistence between religious and rationalistic or mechanistic styles of thought was characteristic of mid-nineteenth century Anglo-American society

The poor and socially marginal have historically been labeled as the disproportionately likely victims of epidemic illness, and they have been traditionally the objects of public-health policy

Question 53

Rosenberg (1989), How do epidemics usually end?

Answer 53

With a whimper, not a bang. Susceptible individuals flee, die, or recover, and incidence of the disease gradually declines.

But it also provides an implicit moral structure that can be imposed as an epilogue.

Historians and policymakers concerned with epidemics tend to look backward and ask what “lasting impact” particular incidents have had and what “lessons” have been learned. Have the dead died in vain?

Epidemics have always provided occasion for retrospective moral judgment

Question 54

Rosenberg (1989), AIDS shattering preconceptions

Answer 54

• we seem not to have conquered infectious disease

- Death is not associated exclusively with a particular and advanced age

Question 55

Rosenberg (1989), In what ways is AIDS similar to the traditional phenomenon of the ‘epidemic’?

Answer 55

• gradual and grudging acceptance of the epidemic as reality, and the resentment expressed toward bringers of bad tidings, the physicians and activists who demand a response
• coping with randomness has provided an occasion for reaffirming the social values of the majority, for blaming victims
• Mixture of biological mechanism invested with imposed moral meaning
• search for meaning. Most Americans find reassurance in faith in the laboratory and its products; they see AIDS as a time-bound artifact of that transitional period between the discovery of this new ill and the announcement of its cure. Others, of course, see its primary meaning in the realm of morality and traditional piety.
• Many of us impose multiple frames of meaning. majority of Americans retain their faith in the laboratory but at the same time believe that AIDS points variously to truths about government, the political process, and personal morality
• Reminds us of reality of our mortality + the anxiety of indeterminacy

Question 56

Rosenberg (1989), two categories of disease

Answer 56

• diseases whose prevention demands individual behavioral change, like syphilis, AIDS, and lung cancer
• diseases that can be prevented by collective policy commitments, like typhoid fever

Question 57

Rosenberg (1989), difficulties posed by AIDS

Answer 57

AIDS reminds us of the difficulty of inducing changes in behavior and thus of the intrinsic complexity of the decisions facing local governments and public-health authorities

has forcefully reminded us of the difficulty of providing adequate care for the chronically ill in a system oriented dispropor tionately toward acute intervention

Question 58

Rosenberg (1989), similarities between AIDS public health campaign and previous ones

Answer 58

• during first decades of 20th C, public health workers who urged the use of condoms and prophylactic kits to prevent syphilis met some of the same kind of opposition their successors in the 1980s faced when they advocated distributing sterile needles to intravenous drug users. In both cases debate turned on distinctions between “deserving” and “innocent” victims.
  In the case of syphilis, the presumed innocents being the wives of erring husbands and their infants; in the case of AIDS, the recipients of contaminated blood or the offspring of infected mother

Question 59

Rosenberg (1989), ritual

Answer 59

AIDS reminds us of need for ritual, even in fragmented modern soc

It is a need that is recognized:

• in the AIDS memorial patchwork quilt that has recently circulated throughout the United States
• public distribution of condoms in public spaces
• calling of conferences graced by individuals representing various agencies of social authority

Question 60

Rosenberg (1989), in what ways is AIDS different from traditional epidemic?

Answer 60

• rapidity of its geographic spread
• rapidity of its identification as a unified clinical entity
• has existed at several levels simultaneously, mediated by the at first uninterested, then erratically attentive media
• novel capacities of late 20th-C med. Providing substan tive cognitive change during the course of an ongoing epidemic, the laboratory and its intellectual products have played a novel role in the narrative structure of our encounter with AIDS. Without the option of serological screening, for example, the intense and multifaceted debate over the imposition of such tests could hardly have been framed. Without knowledge of an infectious agent, the options for public policy would necessarily have been defined differently
• institutional complexity of modern US society

Question 61

Rosenberg (1989), AIDS as Postmodern Epidemic

Answer 61

role of the media and social scientists in our contemplating ourselves

AIDS has underlined the inadequacy of any one-dimensional approach to disease, either the social constructionist or the more conventional mechanistically oriented perspective

AIDS is socially constructed (as society perceives and frames the phenomenon, blames victims, and laboriously negotiates response) yet at the same time fits nicely into a one-dimensionally reductionist and biologically based model of disease.

Question 62

Fee, Fox (1989), AIDS historiography compared to that of other diseases

Answer 62

has stimulated more interest in history than any other disease of modern times

Question 63

Fee, Fox (1989), historians’ initial reaction to AIDS

Answer 63

• early 1980s, Historians, like most other people who paid attention to AIDS, addressed it as a startling discontinuity with the (recent) past
• analogies with time-limited visitations of diseases of more distant past (paper’s authors of also adopted this perspective
• insensitivity of governments, socially and morally repressive attitudes to sexual behavior, the tendency of those in power to blame the poor or other disenfranchised groups for harboring dread diseases, and the potential threat of quarantines or other attacks on individual rights

Question 64

Fee, Fox (1989), context of time at which AIDS struck

Answer 64

• disease allowed some journalists and politicians a ready opportunity to express/ resurrect fear and resentment toward newly visible and assertive gay communities
• struck at the time when containing health costs had become a major objective of governments in the United States and western Europe, and these governments were reluctant to recognize, let alone deal with, the potentially devastating costs of coping with a new epidemic

Question 65

Fee, Fox (1989), alarmists vs advocates of equanimity

Answer 65

alarmists - found analogies to the present in the great epidemics of infectious disease. urged adoption of what had become the classic repertoire of public health responses to epidemics: enhanced surveillance, mobilization of medical resources, and increased research.

Advocates of equanimity - diff historical parallels. Recalled times in the past when exaggeration ofthe severity of an outbreak of infectious disease had led to the deflection of resources from areas of greater need, the exchange of individual rights for an illusory collective good, and diminished repute for the enterprise of public health. E.g. flu non-epidemic of 1976.

Question 66

Fee, Fox (1989), selective use of historical analogy

Answer 66

most of those who used historical analogies avoided the most pertinent aspects of the histories of venereal disease and tuberculosis, emphasizing issues of surveillance and personal control policy and ignoring the problems of housing, long-term care, public education and the financing of palliative care for people suffering from chronic infections

The history of the two leading chronic infectious diseases of modern times was used to understand a very different situation, a polity threatened by devastating plague

Question 67

Fee, Fox (1989), explanation for adopting/ maintaining belief that AIDS = discontinuity

Answer 67

• insistence on discontinuity was useful, politically
• psychological alternative is devastating. Difficulty of admitting that the threat of disease is not transient
• For public officials, health industry leaders and physicians, the idea that AIDS would become another killer chronic disease unpalatable bc adds to the already overwhelming financial and organizational problems of health policy

Question 68

Fee, Fox (1989), AIDS by the mid-1980s

Answer 68

AIDS was institutionalized within academic medicine and the medical care establishment.

Question 69

Fee, Fox (1989) view on most accurate framework in which to understand AIDS

Answer 69

we are not dealing with a brief, time-limited epidemic but with a long, slow, process more analogous to cancer than to cholera

Question 70

Shift towards acceptance of the Fee and Fox model of AIDS

Answer 70

presented earlier version of argument about AIDS as chronic in March 1989, generating considerable distress and skepticism

Three months later, by June 1989, the idea was widely accepted

Samuel Broder, head of the National Cancer Institute, publicly declared that AIDS was a chronic disease and cancer the appropriate analogue for therapy in his speech at the final plenary session of the international AIDS meeting in Montreal

Question 71

Fee, Fox (1989), practical approaches to managing AIDS late 1980s

Answer 71

relatively little talk about quarantine, isolation, and mass testing for the disease. The immediate panicked reactions to the disease have been replaced by medical management

Question 72

Fee, Fox (1989), historiographical shift

Answer 72

rapidly accumulating body of secondary sources in contemporary history has had important impact

cumulative weight of these publications has made obsolete history-by-analogy and, implicitly, challenged the assumptions about discontinuity and the pertinence of the classic plague model on which it was based

These rich secondary sources make plain the continuity between the HIV epidemic and the recent past
(Most of the people who have written these histories have little or no interest in historiography)

Question 73

Fee, Fox (1989), AIDS and social constructivism

Answer 73

AIDS is a particularly good example of the social construction of disease. Oppenheimer, for example, shows how the first pathological evidence was constructed through early epidemiological accounts as GRID, gay-related immunodeficiency disease, despite published reports of heterosexual intravenous-drug using patients with the new syndrome.21 Definitions of disease between 1981 and 1987 focused on a definition of convenience, agreed upon by the Centers for Disease Control and the World Health Organization, that stressed the point at which specific secondary infections were recognized. From 1987, the definition of HIV-related disease brought the conception of disease as close as possible to the point of infection.

Question 74

Fee, Fox (1989), AIDS and ‘progress’

Answer 74

Many of the debates and much of the anger between gay activists and scientists revolve around the idea of scientific progress or the lack of it: the accusation on the part of many activists that scientists have not lived up to the promises of progress and the defensive reaction from scientists that an enormous amount has been learned about the disease in the time available. Most recently, this debate was played out at the international AIDS meeting in Montreal in June 1989

Question 75

Pressman (1990) critique of literary analysis/ analystis

Answer 75

Literary analysis alone cannot give insight into the larger process by which social mores and beliefs change, a question that is at the center of such endeavours

Sontag, for example, exhibits a quaint naivete in her trust of scientific “facts” to liberate us from erroneous or repugnant beliefs

Sontag and others see in AIDS the high-water mark of sexual liberation, a reinforcement of a broad er return to convention, with the implication being that gay liberation ultimately slammed the door on heterosexuals pursuing similar freedoms. This may be premature statement/ an unfair distortion

Gilman’s work, even on its own terms, is less successful than Sontag’s. His reliance upon a static sociopsychoanalytic model decontextualizes the artefacts under study, leading Gilman to forced readings and, ultimately, ahistoricism.
The cultural meaning of sexually transmitted diseases has changed over time and place It is these differences that need further elucidation

Question 76

Pressman (1990) - overview of historians’ criticisms of process of science

Answer 76

Treichler analyzes the descriptive categories used to tabulate patients in the early case reports and finds that the belief in the homosexual origins of the disease led researchers to shunt aside contrary cases, such as those involving women, into the rubric of “Other.’

Oppenheimer establishes that the first published accounts of the mysterious syndrome downplayed causal models based on infectious diseases, such as a virus or germ, in favour of models that underscored the hazards of a “promiscuous” gay “lifestyle.”

Not yet understood is the role played by the concentration of medical attention in the late 1970s upon the sexually transmitted diseases of gays, when the general medical community first became aware of the sexual activities of homosexuals.

as Oppenheimer narrates, when the first cases of AIDS appeared in ‘innocent” children - the moment when the illness was first brought to national attention -prominent medical authorities responded, reflexively, by explaining to the public that the disease can be contracted through casual, innocent contact

The net result was an immediate firestorm of public hysteria and, later, public distrust of physicians when they backtracked on the issue of transmissibility

Question 77

Pressman (1990), differences between AIDS and other infectious diseases

Answer 77

Unlike Parran’s model of syphilis, an individual with AIDS will find it difficult to claim to have contracted the disease i’innocently.” Explanations such as accidental exposure to needle sticks, blood transfusion and hemophilia are all matters of public record

Question 78

Fee on syphilis (Pressman, 1990)

Answer 78

Fee’s case study of Baltimore mid-20th C reveals that the syphilis campaign was used as a basis for laws against sodomy, and for J. Edgar Hoover’s and others’ attempts at a total ‘supression of sexual promiscuity” (p. 134). Post-AIDS legislation targeted at bathhouses, ses clubs, adult theaters, and prostitution no doubt reflects some of this legacy

Question 79

Pressman (1990), positive impact of AIDS on gay community

Answer 79

AIDS epidemic is historically unusual in that it befell a preexisting, well-defined lobby group already in motion

as Dennis Altman illustrates:

gay concerns have found an unprecedented national visibility, an issue around which to congeal an increasingly powerful political voice.

raising of money for “wars” against disease through civic events such as walk-a-thons and philanthropic auctions is a peculiarly American tradition, a process that helped to incorporate gay awareness into many a local community

Question 80

Pressman (1990), impact of gay community on relationship between scientists and the public

Answer 80

• experimental protocols no longer are left to the full control of investigators
• no longer is access to experimental drugs fully in the control of the FDA

Question 81

Pressman (1990), lessons of AIDS history

Answer 81

• we must understand the subtle process by which slow-moving social and cultural beliefs dynamically interact with the fast-paced movement of laboratory knowledge
• historian too is caught within this larger, complex process by which knowledge and society interact

Question 82

Scandlyn (2000), acute illnesses

Answer 82

characterized by a sudden onset, obvious signs and symptoms, and some limitation of normal function

In the United States, metaphors for acute illness arise from the arena of war: viruses invade, bacteria attack, and parasites infest

Question 83

Scandlyn (2000), Chronic illnesses

Answer 83

may arise from an acute episode that does not resolve to full health—for example, a diabetic coma. The course of a chronic illness is uncertain and unlimited in time, usually characterized by alternating periods of acute crisis and remission

Treatment is directed at relieving symptoms and slowing degeneration, not effecting cure

Metaphors for chronic illness are drawn from the language of business: symptoms are managed, crises are averted, support systems are organized, and regimens are designed. Whereas the battle against acute illness is dramatic and heroic, the management of chronic illness, despite its complexity, is banal

Question 84

Scandlyn (2000), two types of AIDS on international level

Answer 84

chronic AIDS in the Western world, where resources are available for treatment with zidovudine and other drugs

acute AIDS in the developing world, where there are no funds for such treatments

Question 85

Scandlyn (2000), consequences of shift to AIDS as chronic illness on national level

Answer 85

• shift in the priority it receives in national health policy and a growing inequity in how resources for its treatment are allocated among the population
• its power as a metaphor for evil is diminished
• Most chronic illnesses carry a stigma
• living with a chronic disease requires a different view of the self and the meaning of the illness and one’s life. When AIDS was an acute illness, the diagnosis was delivered as a death sentence. Chronic and life-threatening illnesses challenge the view of life as linear, consisting of continuity and order
• responsibility for all aspects of management—physical, mental, and social—increasingly falls on the shoulders of those who have the illness. In the absence of a crisis, it is easy to forget that people with an illness are still working hard to care for themselves

Question 86

Scandlyn (2000), When was control of AIDS given high priority from public health officials and govt agencies?

Answer 86

once transmission to women, children, and heterosexual men was identified

Political activity by gay men, most of whom were white, deliberately played on fears of virulence and heterosexual transmission and was effective in securing government support for research and treatment

Question 87

Scandlyn (2000), changes caused by recognition that most new cases of AIDS occur among heterosexuals

Answer 87

• AIDS has become normalized in the sense that more of the population is viewed as vulnerable to infection. Helpful in reducing stigma assoc w AIDS, but has broken down some of the political alliances that mobilized advocacy for people with AIDS in the 1980s.
• incidence of AIDS is several times higher among African American and Hispanic men, women, and children than among whites. Given that minority populations have lower rates of health insurance coverage, treating AIDS means increasing public expenditures on a broad scale. As a chronic illness, AIDS is another problem in a health care system already riddled with problems

Question 88

Scandlyn (2000), impact of development of category HIV positive

Answer 88

has alleviated some of the public fear of the disease and those who have it.

However, people who are HIV positive are stigmatized once their diagnosis is known. Reactions are rarely predictable, thus generating a great deal of anxiety in encounters with strangers or new acquaintances.

Question 89

Scandlyn (2000), ‘stigma’

Answer 89

Every society embodies models or paradigms of how a healthy, normal, whole person appears, acts, feels, and thinks. An attribute that causes the person to deviate from normal is a stigma.

Deviant people are viewed as somehow responsible for their abnormality; thus, their moral character is also challenged

Stigmatized people share society’s view of what is normal. They know they fail to match the model

Question 90

Forstein (2013), gay liberation

Answer 90

The Stonewall “revolt” of 1969 had begun an overt sexual liberation movement that celebrated sex for its own pleasure and affirmed romantic and platonic same sex relationships. Gay men flocked to the urban centers to come out of the closet, creating social structures unique to gay male behavior, such as bathhouses, sex clubs, and backrooms in bars

Question 91

Forstein (2013), importance of gay activism

Answer 91

Were it not for the loud and often abrasive voices of many, science and medicine would not have made the enormous strides in identifying HIV and pushing research to find treatments we now take for granted.

Question 92

Forstein (2013), how history of AIDS should be told

Answer 92

The history of AIDS cannot be told but in the personal accounts of each of us who have suffered with AIDS, or been affected by those who have

Question 93

Forstein’s background

Answer 93

a gay man and a psychiatrist who trained during the very first days of the epidemic

Question 94

Forstein (2013), origins of AIDS epidemic

Answer 94

largely the result of a perfect storm of sexual freedom in the urbanized gay male culture, and the availability of narcotics on a scale never before seen in the world.

Question 95

Forstein (2013), first of three phases of the epidemic: Pre HIV/AIDS

Answer 95

social upheaval

growing visibility of lesbians and gay men in the major urban areas and the emergence of a sexual liberation initially seemed to push society toward a more realistic view of gay and lesbian people.

Question 96

Forstein (2013), second of three phases of the epidemic: Post-AIDS, Pre-treatment

Answer 96

The words “Gay and AIDS” rapidly became the association in the popular press, and attitudes toward homosexuality throughout the medical professions were negatively biased and hostile toward gay and lesbian physicians and other health care providers

epidemiology tracked by the Centers for Disease Control and Prevention (CDC) made it obvious that we were dealing with a sexually transmitted disease.
Mayor of Boston appointed a task force on AIDS to which I was appointed in 1982 while a resident.

calls to round up gay men in the urban centers and sequester them to keep them from purveying AIDS through “immoral” sexual activity

AIDS was blamed for any social ills that befell the country.
Seemed that much of the growing acceptance of homosexuality in the urban centers was being countered by anti-homosexual religious groups that equated being homosexual with AIDS

Funeral parlors sometimes refused to take the bodies of men who had died from AIDS.
Obituaries ran with the code “died from a long bout of cancer.”

I emphatically pleaded for gay men to take control over our sexual lives by using condoms

Boston radical magazine (Fag Rag) labeled me anti-sexual and regressive in my politics

The long fought battle for sexual freedom had slammed up against the medical establishment’s long anti-gay bias. The medical field was accused of trying to limit homosexual behavior.

Question 97

Forstein’s high-profile role in combating AIDS crisis

Answer 97

Within the American Psychiatric Association, the emergence of the gay and lesbian psychiatry group helped push the establishment of an APA Task Force on AIDS in 1985.
1986 the group became a formal Committee on AIDS.
As a member of that group we pushed the APA to develop a stronger voice for the profession and established policies that were intended to decrease stigma about homosexuality and AIDS, and to incorporate learning about AIDS as a complex bio-psycho-social illness.

Commission on AIDS was formed in 1988 to report directly to the Board of Trustees of the APA.
I was appointed Chair of that Commission by APA President Larry Hartmann in 1991 and served in that capacity until 2002

When structural changes in the APA moved the work of the Commission into the APA’s Institute for Research and Education (APIRE) in a dedicated Office on HIV Psychiatry, I served as the Chair of the Steering Committee on HIV /AIDS, changing the mission of the group from simply developing policy to focusing on educating and training medical students, residents and psychiatrists in practice

Question 98

Forstein (2013), two scientific camps

Answer 98

one favoring the infectious, sexually transmitted/blood-borne theory

one blaming gay sex for overloading the immune system because of the ingestion or anal entry of male semen

Question 99

Forstein (2013), psychological side of AIDS

Answer 99

People with the systemic signs of AIDS were presenting with a subcortical type of dementia previously not seen in this age cohort

AIDS anxiety, death and dying, survivorship, disability, and dementia became the issues in a young population

One patient described his sense of feeling “contaminated” and ashamed that he was proving his parents’ admonitions that being gay would lead to hell.

Question 100

Forstein (2013), fears of interacting with AIDS patients

Answer 100

Often, hospital workers would leave food trays outside the door out of fear of being infected from placing a tray by the bedside

Question 101

Forstein (2013), AIDS and race

Answer 101

Homosexuality was seen as a “White gay man’s disease,” leaving gay and bisexual men of color, already managing dual identities in their communities, to deny their own risk, although the numbers of infected men in the minority communities continued to rise.

Question 102

Forstein (2013), debates around HIV testing

Answer 102

some claimed public had right to know who was infected

Others pushed individual rights to know about one’s health status

many in behaviour health field unsure of risks/ benefits - knowledge does not always lead to healthier behaviours

Question 103

Forstein (2013), end of debate about testing

Answer 103

1995 when multiple regimens began to change the very course of HIV infection from an acute, life-threatening illness to a chronic disease

Question 104

Forstein (2013), phase 3 of three, Post-AIDS, post-treatment

Answer 104

Failure of AZT as monotherapy mid-1980s

In 1992, the first multidrug trials were approved

Research into AIDS expanded, and behavioral studies about adherence began to overshadow prevention efforts, particularly in the most vulnerable populations, who for various social and psychological reasons found adherence to the complex regimen more difficult than had been expected. 95% adherence to a three drug regiment, often multiple pills three times daily, was necessary to curtail infection.

the stigma of being HIV positive continued within the gay male community as well as in the larger society

although clean needle exchange programs began to develop and prove effective, only a few states allowed these programs.

Even with the advent of anti-retrovirals, the future for each individual remains ultimately uncertain, dependent on so many variables of biology, adherence behavior, coping mechanisms, and their personal history with the virus.

As the epidemic has transformed into a chronic condition for those who are capable of taking their anti-retrovirals scrupulously, concern about getting infected has decreased

the sense of urgency that remains around the world has decreased in the United States and other developed nations

Question 105

Forstein (2013), Changes to those contracting AIDS, 1990s and 21st Century

Answer 105

shifts in terms of who was getting newly infected

The generation who did not know they were at risk had been decimated, and many gay men made significant behavioral changes whether or not they had been tested.

We continue to have more than 50,000 new infections a year, with the majority occurring in young men of color, African Americans who have sex with men making up the greatest number. The young, racial minorities, people with psychiatric disorders, and the old account for the new infections of HIV in the United States.

Clinically, mental health providers are seeing an increasing greater proportion of those newly infected with HIV with pre-existing psychiatric conditions.

As the population with HIV ages, increased rates of cardiovascular and cerebrovascular changes affect cognition and long-term health. Complex drug interactions occur between medications used for HIV, co-morbid medical, and psychiatric disorders

Question 106

What is ART?

Answer 106

Antiretroviral therapy

Question 107

Forstein (2013), what did we learn from AIDS epidemic?

Answer 107

adherence and behavior are not rationally governed

Question 108

McKay (2014), Gaétan Dugas

Answer 108

the gay Air Canada flight attendant at the center of the “Patient Zero” myth: the man who supposedly introduced the acquired immune deficiency syndrome (AIDS) to the United States.

Shilts re-created a November 1982 confrontation between one of his book’s heroines, Selma Dritz, a San Francisco public health official, and Dugas, in which the flight attendant declared that it was his right to do what he wanted with his body. Dugas’s reported refusal to give up sex, in the face of allegedly strong evidence suggesting the sexual transmissibility of an AIDS-causing agent, is still often cited as proof of a profound disregard for social responsibility.

Mirko Grmek wrote that Dugas had “sown the disease and death all along his route, at the rate of about 250 partners per year’

I oppose the assertion that Dugas ignored incontrovertible information about AIDS and was intent on spreading his infection. Instead, I argue that scientific ideas in 1982 and 1983 about the condition and the transmissibility of a causative agent were later portrayed, by Shilts and others, to be more self-evident and narrowly cast than they in fact were at the time

Dugas was one of many gay men of the time who viewed medical claims and advice with skepticism.

absence of an agreed-upon cause of AIDS or mode of transmission at this time

Dritz herself admitted that when she confronted Dugas with the demand that he stop having sex, it involved stretching the available evidence

In the single available piece of evidence written by Dugas himself - a letter - the flight attendant lamented the difficulty of obtaining reliable information about the condition

evidence suggests that Dugas eventually came to subscribe to the “immune overload” or “multifactorial” theory.

The fact that he did make changes to his behavior—indeed, that his assistance helped guide some of the early efforts of Vancouver’s first AIDS organization—shows that there was much more to Gaétan Dugas than Shilts and St. Martin’s Press saw fit to print

Question 109

McKay (2014), ‘Denver Principles’

Answer 109

June 1983, statement issued by the Advisory Committee of People with AIDS at a gay and lesbian health conference in Denver.

“Denver Principles” explicitly rejected the “passivity” of labels like “patient” and “victim” in favor of the more empowering “people with AIDS” or “PWA” moniker.14 Individuals with AIDS were challenging the notion that they were patients, or indeed patient

Question 110

Shilts’ influence

Answer 110

2007 USA Today article listed the bestselling Band, alongside A Brief History of Time and The Satanic Verses, as one of the most influential books of the previous quarter century

more recently, it was selected by the Library of Congress as one of eighty-eight “Books That Shaped America.

Question 111

McKay (2014), Origins of ‘Patient Zero’

Answer 111

William Darrow, the CDC investigator who was eventually able to expand the Los Angeles cluster to connect forty cases in several cities:

acknowledged in a 2008 interview that the term “patient O”—the letter “O” abbreviating the patient’s “Out[side]-of-California” residential status—evolved within the CDC to become the numerical “patient 0.”

Patient Zero was not supposed to indicate the original carrier who brought AIDS to the US

Question 112

Shilts’ portrayal of Dugas

Answer 112

dangerous foreigner bringing in disease from abroad and threatening the American public’s health, a trope that would have resonated with many of his book’s readers, given the U.S. government’s moves in 1986 and 1987 to exclude noncitizens with HIV

appears that Dugas, in Shilts’s history of AIDS, was to exemplify those who continued to have sex during the epidemic’s early period of uncertainty

I contend that Shilts gradually combined his originally planned “Epidemic” character with the information he was gathering about Dugas to create a deeply powerful figure of evil, investing the virus itself with agency

Dugas’s sexual exploits, in a time before AIDS was conclusively demonstrated to be caused by a sexually transmissible agent, became conscious acts of infection in Shilts’s book

Question 113

Epstein, Impure Science (McKay’s account)

Answer 113

period from 1982 to 1983 generated both intense debate and strong criticism of scientists and biomedical researchers, and individual self-education was considered to be the best approach for many gay men

Question 114

McKay (2014), gay community mistrust of docs

Answer 114

In the Body Politic, the left-leaning gay periodical, the gay activist Michael Lynch argued that “gays are once again allowing the medical profession to define, restrict, pathologize us’

Question 115

Brier on Reagan administration (McKay’s account)

Answer 115

most important factor shaping the Republican administration’s response to AIDS was the lead role taken by members of the Department of Education
The department’s secretary, William Bennett, and the under secretary, Gary Bauer, who was also Reagan’s advisor on domestic policy issues, developed a response that was in keeping with the religious support base of the New Right. Their approach took every opportunity to reinforce the supremacy of heterosexual marriage and traditional gender roles.

constructed ‘deserving’ person w AIDS

Question 116

McKay (2014), immediate influence of And the Band Played On, published 1987

Answer 116

timing ensured that the figure of the deliberate, malicious AIDS spreader, which had been forming in a somewhat inchoate manner earlier in 1987, and which built upon previously existing fears of people with AIDS, took root in the public imagination

Significantly, this figure now had a name and, following a 60 Minutes television news special in November 1987, a nationally broadcast face

this historical case gave lawyers a powerful example of a malicious disease spreader that allowed them to circumvent the difficulties that they would have faced in terms of establishing malice and an intent to infect in a court of law.

y November 1987, the same month that the book went into wide release, advocates of tough penalties for HIV transmission were mobilizing the “Patient Zero” story.

The State Factor, a conservative legal publication put out by the American Legislative Exchange Council lobby group, , featured Dugas’s interaction with Selma Dritz in its December issue. The article argued that criminal laws were needed to deal with this small minority of AIDS patients who “either are intent on infecting others—or simply do not care enough to change their sexual practices.

Presidential Commission on the Human Immunodeficiency Virus that President Reagan had assembled in the summer of 1987. The commission held its first hearings in September, just as the prerelease publicity for Shilts’s book began to take hold in the national media, and continued its deliberations until June 1988, when became nonfiction bestseller

The commissioners were evidently concerned with the potential risk posed by individuals like Shilts’s “Patient Zero.”
Seems likely that the recommendations of their final report for increased use of criminal law and the powerful stories of deliberate disease spreading typified by the example of Dugas may have contributed to just this type of trend

By the end of the 1990s most states had in their statutes some form of legislation that addressed the deliberate transmission of HIV

This controversial approach was subsequently transferred internationally to several west African countries, through the process of “model HIV law,” where ready-made legal frameworks were exported abroad as part of U.S.-funded development aid.

Question 117

McKay (2014), similarity with previous epidemics

Answer 117

suspicion of vengeful transmission, as exemplified by Shilts’ portrayal of Dugas

Question 118

Sontag (1989), special status of AIDS as disease

Answer 118

displaced cancer as most stigmatized disease

Seems that societies need to have one illness which becomes identified with evil, and attaches blame to its ‘victims’, but it is hard to be obsessed with more than one

Question 119

Sontag (1989) AIDS’s dual metaphoric genealogy

Answer 119

invasion - e.g. cancer

pollution - e.g. syphilis

Question 120

Sontag (1989), AIDS and military metaphors

Answer 120

different to those used to describe cancer

AIDS - enemy is what causes the disease. Infectious agent from the outside, not inside.

Alien takeover familiar in science-fiction narratives - in era of Star Wars and Space Invaders, AIDS = ideally comprehensible

Question 121

Sontag (1989), what makes AIDS so terrifying?

Answer 121

contamination, and therefore vulnerability, is understood as permanent and progressive

dehumanizing nature of AIDS. Significance of effect on face due to face>body hierarchy. Worst are alterations which appear like mutations into animality

Underlying some of moral judgements attached to disease are aesthetic judgements about beautiful and ugly, clean and unclean, familiar and alien

status of AIDS as unexpected event, entirely new disease - new judgement - adds to dread

Question 122

Sontag (1989), stages of AIDS

Answer 122

HIV to AIDS-related complex (ARC) to AIDS

Definition of AIDS depends on this temporal sequence of stages

Question 123

Sontag (1989), lack of positive portrayal of AIDS

Answer 123

AIDS does not allow romanticizing or sentimentalizing, perhaps bc its assoc w death too powerful

Question 124

AIDS and stigma, Sontag (1989)

Answer 124

to get AIDS is to be revealed as member of a certain ‘risk group’, community of pariahs.

Unsafe behaviour that produces AIDS is judged to be more than just weakness. It is indulgence, delinquency - addictions to chemicals that are illegal and sex regarded as deviant

Getting the disease through a sexual practice is thought to be more wilful, therefore deserves more blame

ostracizing even of hemophiliacs and blood-transfusion recipients - potentially rep greater threat bc not as easy to identify as the already-stigmatized

Indeed, AIDS is perceived as afflicting the already stigmatized

Question 125

Sontag (1989), AIDS and race

Answer 125

US - ppl told that heterosexual transmission extremely rare and unlikely - as if Africa did not exist

illustrating the classic script for plague, AIDS is thought to have started in the ‘dark continent,’ then spread to Haiti, then to the US and Europe. It is understood as a tropical disease.
Links to familiar racist stereotypes about animality, sexual license and blacks

Were AIDS only an African disease, few outside Africa wld be concerned w it. Wld have been seen as ‘natural’

Question 126

Sontag (1989), significance of status of AIDS as a ‘syndrome’

Answer 126

makes it v much product of definition and construction

Contention AIDS is invariably fatal depends partly on what docs decided to define as AIDS

this rests on notion of ‘full-blown’ disease. Botanical/ zoological metaphor - what is immature is destined ot become mature. Metaphor leads support to interp of clinical evd which is far from proved - idea that infection will always produce something to die from

moves to phase out category of ARC and stress continuity of disease - strengthens fatalism already in place

Testing positive for HIV increasingly equated w being ill - infected means ill.
‘Infected but not ill’ - notion of clinical med - is being superseded by biomed concepts which amount to reviving antiscientific logic of defilement, and making infected-but-healthy a contradiction in terms

Question 127

Sontag (1989), negative consequences of testing HIV-positive

Answer 127

Ppl losing jobs

US Dept of Defense - military personnel discovered to be HIV-positive being removed from ‘sensitive, stressful jobs’

social death

Question 128

Sontag (1989), AIDS and premodern experience of illness

Answer 128

AIDS reinstates something like premodern experience of illness

modern biomed testing - new class of lifetime pariahs, the future ill

Radical expansion of notion of illness

Throwback to era when illnesses were innumerable, mysterious, and progression from seriously ill to dying was something normal

Question 129

Sontag (1989), principal metaphor by which AIDS epidemic understood

Answer 129

plague

AIDS understood in premodern way - disease incurred by ppl both as individs and mems of ‘risk group’ - category which revives archaic idea of a tainted community that illness has judged.
Plague = viewed as judgement on society and its morals

assumed AIDS must become widespread elsewhere in same catastrophic form in which has emerged in Africa.
Plague metaphor is essential vehicle of the most pessimistic reading of the epidemiological prospects

Question 130

Sontag (1989), common African belief about AIDS

Answer 130

virus fabricated in CIA-Army lab in Maryland

This view spread by Soviets e.g. ‘Radio Peace and Progress’

Question 131

Jerry Falwell

Answer 131

‘AIDS is God’s judgement on a society that does not live by his rules’

Question 132

Sontag (1989), secular motives of those mobilising rhetoric of AIDS as plague/ threat

Answer 132

Authoritarian polit ideoogies have vested interest in promoting fear, sense of imminence of takeover by aliens.
most extreme nativist, racist views in France from Jean-Marie le Pen - calling for nationwide testing and quarantine of everyone carrying AIDS

denunciations of ‘gay plague’ = part of much larger Western antiliberals’ complaints about contemporary permissiveness of all kinds

AIDS as tool for mobilising neo-constervatives’ politics of the will - intolerance, paranoia, fear of political weakness

fears of uncontrollable pollution and unstoppable migration from Third World

Question 133

Sontag (1989), ‘us’ and ‘them’

Answer 133

this stressed by antileberals - who emph that AIDS mustn’t be made everyone’s problem

Question 134

Sontag (1989), AIDS, individual and collective

Answer 134

AIDS fosters ominous fantasies about disease which is marker of both individual and social vulnerabilities.

Virus invades body; disease invades whole of society

Question 135

Sontag (1989) AIDS and metaphorical potency of the ‘virus’

Answer 135

virus = synonym for change

many metaphors drawn from virology - e.g. in computers - partly stimulated by omnipresence of talk of AIDS, are turning up everywhere.
They reinforce sense of the omnipresence of AIDS

Question 136

Sontag (1989), AIDS and medicine

Answer 136

Med had been viewed as age-old military campaign nearing final phase leading to victory

Advent of AIDS made clear infectious diseases far from conquered

Question 137

Sontag (1989), AIDS and changes in morality

Answer 137

Med changed mores - contraception and assurance of eary curability of STDs made it poss to regard sex as adventure w/o consequences. AIDS obliges ppl to think of sex as poss having consequences.
AIDS reveals all but long-term monogamous sex = promiscuous and deviant

fear of polluting ppl

AIDS reinforces American moralism about sex

It further strengthens culture of self-interest

AIDS fear enforces more moderate exercise of sexual appetite - US sexual behaviour pre-1981 now seems for the m-c part of a lost age of innocence

AIDS stimulating return to ‘conventions’. Amplifies widespread questioning rising throughout 1970s of many of ideals of enlightened modernity

Question 138

Sontag (1989), different nations’ public health responses to AIDS

Answer 138

US Guide for Schools late 1987 by Dept of Ed - refused to discuss reducing risk and proposes abstinence.
Talk of condoms and clean needles is felt tantamount to condoning and abetting illicit sex, illegal chemicals

European societies are unlikely to urge ppl to be chaste.
Instead advising caution and individual research - ‘Don’t die of ignorance’.
Advocation of condoms
Saying it over and over to instill consciousness of risk, necessity of prudence

Question 139

Sontag (1989), capitalism

Answer 139

encourages abundant appetites/ individual liberty

recreational, risk-free sexuality is inevitable reinvention of culture of capitalism.
AIDS changed all that

Warnings to consumers to be more cautious and selfish may stimulate culture of consumption - anxieties require further replication of goods and services

Question 140

Sontag (1989), AIDS and apocalyptic thinking

Answer 140

AIDS occupies such a large part in our awareness bc = model of all catastrophes privileged populations feel await them

Biologists and public hlth officials predict something far worse than can be imagined or that society (and economy) can tolerate

Talk in the US is of national emergency. New York Times editorial last yr - ‘we live in time of plague such as has never been visited on our nation’

AIDS as part of wider apocalyptic talk - e.g. death of oceans and lakes and forests. Inevitable rise in apocalyptic thinking in countdown do millennium but also taste for worst-case scenarios reflecting need to master fear of what is felt to be controllable

as with other events - AIDS as event (present state) and image - fears of imminent future disaster

Question 141

Harvard historian of science, Gould, in 1980s

Answer 141

AIDS may rank with nuclear weaponry as ‘the greatest danger of our era’

Question 142

Sontag (1989), AIDS as global phenomenon

Answer 142

AIDS is one of the dystopian harbringers of the global village

WHO head, Dr Mahler - ‘AIDS cannot be stopped in any country unless it is stopped in all countries

Darwinian test of aptitude for survival - German AIDS specialist Dr Helm - ‘a society that is not able… to prevent the spread of AIDS has v poor prospects for the future

Question 143

Which illness/ AIDS metaphor is Sontag (1989) most eager to see retired?

Answer 143

Military metaphor:

• over-mobilizes
• overdescribes
• powerfully contributes to the excommunicating and stigmatizing of the ill

Question 144

Wilton (1992), HIV infection as global epidemic

Answer 144

shows little sign of slowing

spread to every country int he world

AIDS leading cause of death for women and men aged 20-40 in many major cities in Americas, Western Europe and parts of Africa

WHO notified of 334,216 cases of AIDS around globe by beginning of March 1991

AIDS underreported in all countries

WHO - end of 1990, 802,000 reported cases of AIDS, w further 8.5 mil estimated to have HIV

This is in no sense an epidemic we can be sure of vanquishing

Question 145

Wilton (1992), UK AIDS stats

Answer 145

end of Sept 1991, 4,777 men and 288 women known to have AIDS in UK, of whom 3,158 had already died

Question 146

Wilton (1992), three common opportunistic infections in AIDS

Answer 146

Karposi’s sarcoma - skin cancer. Purplish lesions

Candida albicans (thrush) - white patches

pneumocystis carinii pneumonia (PCP)

Question 147

Wilton (1992), recent shift from ‘risk groups’ to

Answer 147

‘risk behaviours’

Question 148

1988 Health Education Authority survey to evaluate public information campaign

Answer 148

most ppl in the UK now know HIV spread by unprotected sex, med use of contaminated blood, sharing drug-injecting equipment, mother to baby

Question 149

Wilton (1992), UK govt slow reaction to AIDS

Answer 149

despite urgent pressure from groups e.g. Terrence Higgins Trust (THT) and Health Education Council (HEC), not until 1986, 5 yrs after first AIDS-related deathsi n UK, that the govt launched national public education campaign

routine confiscation of imported gay magazines from USA meant safer sex expertise developing in US not available to ppl in the UK

Question 150

Wilton (1992), British press reaction

Answer 150

all-out attack on homosexuality

Times, 27 July 1983 - network of promiscuous urban homosexuality, constantly folding back on itself, provides idea diffusion field for any infection getting into it

overt homophobia, covert homophobia and guilt by differentiation

it is the press who have created the widely accepted distinction between ‘innocent victims’ of HIV/ AIDS and those who are, by that logic, presumed ‘guilty’

hysteria of AIDS reportage put lives at risk - paramedics and public alike less willing to touch those bleeding + in need

unique nastiness of the British gutter press

increased risk to heterosexuals - insistence AIDS = homosexual problem

homosexuals symbolically cast out of ‘public’

Question 151

The Sun 14 Oct 1985

Answer 151

Headline of story - ‘I’d Shoot My Son If He Had AIDS Says Vicar’

Question 152

Daily Star, December 1988

Answer 152

‘Ghettos? A Good Idea!’

calls for setting up of ‘leper-like colonies’

Question 153

Sun, 6 May 1987

Answer 153

‘Fly Away Gays - And We Will Pay!’

offered free one-way airline tickets to Norway

Question 154

Observer (28 December 1986)

Answer 154

‘New Morality and The Sexual Time Bomb’

Wapshott - show ‘sympathies and understanding for those trapped by their own proclivities’

Question 155

Woman’s Own (3 May 1986)

Answer 155

‘I’ve got nothing against the homosexual community… but they were consenting adults, they did have a choice’

Question 156

1986 Daily Express

Answer 156

homosexuals who have brought this plague upon us shld be locked up

Question 157

Poll of News of the World readers (1 March 1986)

Answer 157

56.8% in favour of suggestion AIDS carriers shld be sterilised and given treatment to curb their sexual appetite

Question 158

Wilton (1992), press later in epidemic

Answer 158

link between homosexuality and AIDS defended more overtly

Telegraph - 5 June 1988 - no risk to heterosexuals, and notion of heterosexual spread propagated by ‘gay conspiracy’

Question 159

Wilton (1992), women and AIDS

Answer 159

Women’s second-class social status

women referred to by many med writings simply as ‘vectors of infection’

as though infection may only be said to have occurred once a man has been infected - infecting a woman somehow does not count until she passes it on

HIV/ AIDS predom seen as male med problem

contraception has come to be seen as women’s business

dictates of masculinity demand full penetration and orgasm inside of woman. Prevent woman from negotiating use of condom

women culturally assoc w contamination and disease

Question 160

Wilton (1992), hlth promotion

Answer 160

med profession’s reluctance to accept as ‘sex’ anything which departs from ‘normal’ model of penis-in-vagina intercourse makes difficult for non-penetrative sex to gain ‘official’ recognition as single most effective physical strategy to prevent transmission of HIV

plenty of safer sex advice for heterosexual women - v little for heterosexual man

Black and minority groups poorly served in UK

Question 161

Wilton (1992), AIDS and race

Answer 161

epidemiological studies have led researchers to conclude no evd to suggest virus present in African before US

Haringey Council Race quality Unit, paper AIDS and Racism - sophisticated genetic tests have shown that virus which infects African green monkeys = fundamentally different to HIV,

lack of public sphere efforts to share disproving of green money theory, tho there had been much attention to theory when propounded

impressions of Africa as dirty, uncontrolled sexuality

Findings in one of the London hosps early 1992, showing high percentage of pregnant women testing positive for HIV antibodies had connections w Africa - copious press coverage

Disease most prevalent in cities in Africa but to judge by media representation in UK, there is no urban Africa

relief to be able to believe AIDS just one more disaster in distant Africa

Question 162

Wilton (1992), state of AIDS in Africa

Answer 162

Reported cases of AIDS across the 53 African countries vary from 0.3 per million in Nigeria to 568 per mill in Congo

avg rate over Africa as whole = 78.1 per million, compared to avg across US of 464 per mil, equalling that across Uganda

Malaria frequently gives false positive result on HIV antibody test

Question 163

Guardian 3 Feb 1987

Answer 163

Strange habits of the ‘Nairobi hooker’ who ‘emerges after dark’ to ‘preen’ and ‘stalk her prey’

Question 164

Wilton (1992), Racism and AIDS within nations

Answer 164

South Africa:

• whites have doc-patient ration of 1:330
• Black ratio 1:1,200

US:
Latina woman 9x more likely than white woman to contract HIV
Black woman 12x more likely
due to poverty

Question 165

Terrence Higgins Trust informative booklet ‘AIDS and HIV’, 1997

Answer 165

who can get HIV infection?

ppl having sex w ppl who have lived in or visited central Africa

anyone who has lived there or visited the area and had sexual intercourse there could… be at risk

(no mention that risk greater in some US cities than some African countries!)

Question 166

National Front leaflet, ‘Conspiracy to Destroy our Nation through AIDS’

Answer 166

AIDS-infested Africans brought into Britain to live on dole and social security

Question 167

US President publicly recognised AIDS as problem (Wilton 1992)

Answer 167

1987

after 25,644 Americans known to have died

Question 168

Wilton (1992), early response to AIDS in US and UK

Answer 168

• fire-fighting mentality, working reactively rather than proactively
• development of ‘deviant’ expertise. expertise of gay men

new right ascendancy, crusade against ‘permissiveness’. Overtly Christian morality. ‘Victorian values’

Question 169

Thatcher, May 1988

Answer 169

‘A nation of free people… will only continue to be great if fam life continues and the structure of that nation is a fam one’

Question 170

Wilton (1992), sex ed

Answer 170

doctrine of sex ed developed and implemented

Question 171

Thatcher, 1987 Tory Party conference

Answer 171

‘children who need to be taught to respect trad moral values are being taught that they have an inalienable right to be gay’

Question 172

Terrence Higgins Trust

Answer 172

• estab 1983 by friends of Terrence Higgins, one of the first gay men to die w AIDS in Britain
• charitable status 1984
• produced AIDS ed leaflets and materials, initially for gay men but v quickly for wider audience
• lobbied govt gor response
• telephone help line from 14 Feb 1984
• Sept 1985, govt grant of £35,000
• Tony Whitehead, head of the trust in 1986

Press, media, govt came to rely on the Trust for information - same reversal of expertise as in State

Govt hostility - £466,000 funding to THT up to autumn 1987
£10 million given to Haemophilia Society to set up trust fund for HIV+ haemophiliacs
- govt gave £250,000 less than agreed in 1987

Question 173

UK Public Health and Control of Diseases ACT, 1984

Answer 173

enforced hospitalization and if necess detention of PWA

blood screening programme

Question 174

AIDS Coalition to Unleash Power

Answer 174

est 1987 in US, out of mtg called by Larry Kramer

• civil disobedience
• demonstrations demanded changes in drugs trial procedures and increased funding for AIDS treatment research

-ACTUP chapters estab in UK

Question 175

Bt govt hlth promotion campaign targeting ‘youth’

Answer 175

‘Don’t Aid AIDS’ in youth press (1986)

‘Don’t Inject AIDS’ in youth press (1987)

Question 176

National UK media campaigns

Answer 176

Don’t Die of Ignorance - 1987

You’re as Safe as You Want to Be - 1988

Question 177

Section 28 Local govt act

Answer 177

becomes law 1988 despite mass opposition

prohibits use of local govt funds to ‘promote’ homosexuality, or represent ‘pretended fam relationships’ as acceptable

paragraph tacked on exempting anything carried out to prevent spread of disease

Question 178

First UK case

Answer 178

December 1981

Question 179

Discovery of cause retrovirus

Answer 179

1983

initially labelled HTLV and LAV

Renamed HIV in 1986

Question 180

Don’t Die of Ignorance campaign

Answer 180

• £20 million
• Mass Media - leaflets, TV, billboards, Tube adverts
• Jan 1987 TV broadcast. ‘Monolith’. John Hurt voiceover. Hard-hitting. Images of person hammering AIDS to tombstone. ‘So far confined to small groups but spreading’. ‘Anyone can get it’. Emph on individ. If you ignore cld be the death of you
• Feb 1987 broadcast - iceberg at sea, camera pans to water to show AIDS. idea that small groups hit so far = tip of iceberg (?)

-leaflet. stark black cover with bold type.
10 points. 1 - includes encouragement to tell children if feel they need to know. 2 - anyone can get. 4 - transmission. 5 - fewer partners, less risk. Best to stick with one faithful partner. Use condoms for safer sex.
7 - Not safe to use equipment for tatooing, piercing, acupuncture unless you know sterilised
8 - can’t get through normal contact e.g. shaking hands. No danger from public toilets. Giving blood is safe. All blood used for blood transfusion in this country rigorously checked
9 - dangers of abroad. Certain developing countries med equipment may not be properly checked - avoid any treatment involving injections and surgical procedures.
10 - ultimately defence against the disease depends on all taking responsibility for own actions

• Declining rates of STIs, more people coming forward for tests

Question 181

Bayer (1992), potential negatives of epidemic appearing less threatening than thought

Answer 181

fear of more limited funds

increasing association of AIDS with the underclass may fundamentally weaken the political alliance that underlay the voluntarist consensus which dominated public discourse about prevention policies in the epidemic’s first decade.

Question 182

Bayer (1992), HIV testing

Answer 182

controversy centered on the role of testing in supporting the radical modifications of behavior that were universally deemed critical to altering the epidemic’s course. Out of these debates emerged a broad consensus, often codified in state statutes, that testing should be conducted only with the informed voluntary and specific consent of individuals.

Despite that standard, and the carefully defined, though always contested, exceptions to its scope, many clinicians and hospitals undertook surreptitious testing of patients, justifying their practices by the belief that the protection of health care workers and sound diagnostic work required such screening

With the announcement in mid-1989 that clinical trials had revealed the efficacy of early therapeutic intervention in slowing the course of illness in asymptomatic but infected persons and in preventing the occurrence of Pneumocystis carinii pneumonia, the political debate about testing underwent a fundamental change. Gay groups such as Project Inform in San Francisco and the Gay Men’s Health Crisis in New York, which had formerly opposed testing, now began to encourage people in high-risk groups to determine whether or not they were infected

Question 183

Bayer (1992) AIDS and public health US

Answer 183

it has remained clear that the AIDS epidemic will be stemmed only when radical voluntary changes in behavior are made and sustained. Educational campaigns and counseling programs, most effectively undertaken by groups linked to the populations at risk, have remained the centerpiece of that preventive effort. Such efforts are still limited by moralistic trends in American society, and especially by those reflecting the abhorrence of homosexuality. The most striking failure in the preventive realm, however, is rooted in the unwillingness to commit the resources necessary for the provision of drug abuse treatment.

The dimensions of that failure were underscored in the 1988 preliminary report of the Presidential Commission on the HIV Epidemic.[34] A vast expansion in government efforts was needed. One and a half billion dollars a year would be necessary for drug abuse treatment and education.

Question 184

Bayer (1992), strains produced by chronic features of AIDS

Answer 184

spring of 1988, investigators writing in the Bulletin of the New York Academy of Medicine could assert that “to ignore the possibilities inherent in the empirical evidence available is to create a social calamity even greater than the one already perceived. … One can imagine bitter competition for hospital beds

Volunteerism was no substitute for the institutional response that was demanded. Three to five hundred new acute care hospital beds would be needed each year for five years in order to meet requirements of those who became ill. In addition, hundreds of nursing home beds and special housing units would be needed for those requiring less intensive medical care. The capital costs alone for meeting these demands would be over $700 million. And if only half of those who could benefit from ambulatory care for HIV infection were to seek it, the city’s already overburdened clinic system would have to absorb an additional 800,000 visits a year

winter of 1990 Senator Edward Kennedy, the exemplar of Democratic party liberalism, and Senator Orrin Hatch, a Republican whose stance on abortion often cast him in the role of a conservative, jointly sponsored legislation—the Comprehensive AIDS Resource Emergency Act of 1990—that would provide a major infusion of federal assistance to those localities most severely burdened by AIDS.
Legislation promised to provide $2.9 billion over 5 yrs.
Success in Senate - 95-4.

Fall - Congress, confronted with a severe budgetary crisis, slashed funds for the now-renamed Ryan White Act.

If those with HIV infection can receive ongoing clinical care, behavioral changes can be encouraged, supported, and sustained

Question 185

Berridge (2007), public hlth 19th C

Answer 185

• spur to reform was epidemic disease—and especially the impact of cholera outbreaks in 1831-2,
  in 1848, and again in the 1860s.
• Edwin
  Chadwick, Report on the Sanitary Condition of the
  Labouring Population (1842). Chadwick drew the link between dirt and
  disease, and its association with overcrowding and poor sanitation
  he saw a strong role for
  the central state in order to achieve the greatest good for the greatest
  number.

-The Public Health Act
of 1848 set up a Central Board of Health. But legislation was only
permissive and not compulsory

-Sir John Simon, as medical officer to the Privy Council Office, helped to push
through Public Health Acts in 1872 and 1875 which forced every local
authority to establish a sanitary body as well as to inspect housing and
monitor food supplies and ‘nuisances’

• Medical Officer of Health (MoH), compulsory for the first time at the local level under the 1875 Act
• impetus behind public health was informed by fear. Fear was focused on what was seen as the growth of a ‘residuum’, a race of degenerates

Question 186

Winslow, American public hlth authority, three phases in devel o public hlth

Answer 186

• from 1840 to 1890, environmental sanitation
• from 1890 to 1910, developments in bacteriology, resulting in an emphasis on isolation and disinfection
• 1910, emphasis on education and personal hygiene, referred to as personal prevention

Question 187

Berridge (2007), significance of discoveries of Koch and Pasteur for public hlth

Answer 187

made public health more important as a profession

moved the focus of attention away from the environment and towards
the individual patient as the locus of infection

Question 188

Berridge (2007), new public hlth of early 20th C

Answer 188

founded on the concept of ‘personal prevention’. This was also a marriage between public health and eugenics.23 The political
imperative for reform was there, especially after the Boer War had revealed the shortcomings of British army recruits and heightened eugenic fears of ‘national deterioration’ and ‘racial decline’.

focus was on the individual—and especially the individual mother.

Question 189

Berridge (2007), new environmentalism

Answer 189

new environmentalism based on the individual came into the smoking story through the rise of passive smoking

This new environmentalism also carried with it a revival of the fear of infection which found its apogee in the impact of HIV/AIDS in the later 1980s

Question 190

Berridge (2007), framework in which HIV/AIDS was understood/ handled by public hlth

Answer 190

HIV/AIDS symbolized a revival of communicable disease in public health, later to be confirmed by BSE, SARS, and bird flu. But AIDS was also a lifestyle disease par excellence in its initial incarnation, and the response to it in the UK epitomized the key tenets of that style of public health, with the emphasis on behaviour modification and individual responsibility.

Question 191

The Iconography of AIDS

Gilman, 1987

Answer 191

Influenced by the construction of the iconography of STIs (eg syphilis) - isolation, labelling women as the source of disease

Distance
- NYT, 1985, doctors distanced from ‘act of healing’ - this was typical of reporting which created and reflected an anxiety about ‘polluting’ contact with PWAs/STI sufferers

Question 192

Fee + Krieger (1993) on the construction of AIDS

Three paradigms

Answer 192

Paradigm One: ‘gay plague’, analogy with epidemics of the past

Paradigm Two: a normalised, chronic disease

–> Both inadequate, they propose: ‘a collective chronic infectious disease and persistent pandemic, manifested through myriad specific diseases associated with human immunodeficiency virus (HIV) infection

Question 193

Fee and Kreiger (1993) - AIDS as infectious?

The significance of HIV identification

Answer 193

• 1983, HIV virus identified and AIDS is seen as an infectious disease
• vague notions of ‘virus’ and spread by ‘bodily fluids’ increased fear
• refusal to wear/touch clothes previously worn by AIDS patients
• Shift in focus from risk groups to risk behaviours

Question 194

How did the treatment of AIDS change when it came to be seen as chronic?

Patient’s efforts?

Fee and Kreiger, 1993

Answer 194

• etiology > pathology
• Palliative Treatment: azidothymidine (AZT) for people with AIDS/HIV positive people
• ‘from the point of view of health service delivery, AIDS was becoming just another expensive disease, like cancer…’
• change in focus from prevention to detection and treatment

Alternative therapies pioneered by patients (buyers’ clubs, Chinese medicine)

Question 195

What criticisms do Fee and Kreiger offer of their first two paradigms of AIDS?

Fee and Kreiger (1993)

Answer 195

• Gay plague ignores long-term perspective
• ‘In accepting the chronic disease model’s emphasis on pathology and treatment, many scientists and health care professionals have lost signt of the fact that AIDS is both infectious and preventable.’

Question 196

Berridge, Strong (2009)

British Policy Response to AIDS

Answer 196

1981-6 - ‘surprise and shock’
1986-7 - ‘high-level national emergency’
1987 - ‘normalisation’: a calmer period has ensued
(chronic>epidemic)

Question 197

How did the modelling of AIDS change in the 1980s?

Answer 197

BEFORE

• AIDS (renamed) seen as a novel disease
• focus on risk groups, not risk acts heterosexual population came to be seen as a potential risk group, changing this
• Historical analogies to AIDS were smallpox, cholera, not TB, which would have raised to mind rather different policies issues, involving problems of housing, poverty and community care.’

AFTER

• ‘plague’ –> chronic: isolation of HIV meant AIDS became ‘a set of biomedical problems open to chemical resolution’
• ‘cure’ –> ‘management’ of disease with drugs like AZT
• Health education campaign launched 1986 when threat to heterosexual community was recognised

Question 198

Ewan Ferlie, The NHS Responds to HIV/AIDS

Aids as a ‘crisis’?

Answer 198

• AIDS was seen as a ‘crisis’ as Britain looked to America and considered itself to be only four years behind their state of crisis –. education campaign, media interest.

Question 199

VIRGINIA BERRIDGE and PHILIP STRONG*

AIDS and the Relevance of History

Answer 199

• Sir Donald Acheson, Chief Medical Officer in the DoH, made sure historians were listened to:
• Historians of past epidemics like cholera
• History of ‘moral panic’, stigmatisation of past STIs

Question 200

What Is an Epidemic? AIDS in Historical Perspective
Author(s): Charles E. Rosenberg (1989)

What qualifies AIDS as an epidemic? Is our understanding of the nature of that epidemic straightforward?

Answer 200

‘an event, not a trend…does not proceed with imperceptible effect until retrospectively “discovered” by historians and demographers’

‘AIDS has shown itself both a very traditional and a very modern sort of epidemic’

Question 201

Ewan Ferlie, The NHS Responds to HIV/AIDS

Local political cultures as a factor in variation of the response to the AIDS crisis?

Answer 201

Local political cultures were also important: the context was perhaps more receptive in Inner London (where the gay social movement was best developed), while some of the councils in the regional centres showed greater nervousness about dealing with issues related to sexuality, and the Scottish political culture complicated efforts to develop services for drug injectors.

Question 202

What Is an Epidemic? AIDS in Historical Perspective
Author(s): Charles E. Rosenberg (1989)

What factors were believed to make victims of an epidemic predisposed to infection in the past?

How significant were social factors in past epidemics?

How are these considerations relevant to the AIDS crisis today?

Answer 202

During nineteenth-century cholera epidemics, for example, alcoholism, gluttony, sexual promiscuity, and filthy personal habits were widely accepted as predispositions to
the disease

victims were predisposed by their environment to indulgence in such habits as drinking and sexual promiscuity yet could still be held responsible for the physical consequences of such indulgence. - social factors?

Question 203

What Is an Epidemic? AIDS in Historical Perspective
Author(s): Charles E. Rosenberg (1989)

How is AIDS a modern epidemic?

Answer 203

For most Americans, insofar as this epidemic can be
construed as a national phenomenon, it is a media reality, both exaggerated and diminished as it is articulated in forms suitable for mass consumption. The great majority of Americans have been spectators, in but not of the epidemic.

‘novel capacities of late 20th c medicine’

Finally, Americans have created a complex and not always consistent health-care system, and AIDS has been refracted through the needs, assumptions, and procedures of that system. - difficulties of caring for chronically ill in a system oriented disproportionately towards acute intervention

Question 204

PRIMARY SOURCE: Roy Porter (1986) History says no to the policeman’s response to AIDS

Answer 204

• the crucial weapon must be education, as cure is years away
• Should AIDS be added to the Notifiable Diseases Act?
• Historical precedent says no
• Faced with the enormity of the suffering AIDS will inflict, humanity demands that we at least consider draconian meaures such as
  compulsory screening for suspected virus carriers and further steps to protect others.
• If we begin to treat victims like criminals we alienate those whose cooperation is most needed and encourage them to behave

Question 205

How did the British press represent the homosexual?

Answer 205

• The twilight world of the homosexual

- ‘climate of fear’

Question 206

How did the British Gay Community respond to AIDS?

Answer 206

• The Gay London Switchboard: calls worrying about the new disease
• Many gay men had to come out to families, some thrown out of homes

Question 207

Fighting AIDS: Middlesex Hospital

Answer 207

• seen as ‘a clinic that welcomed gay men’

Question 208

AIDS deaths UK

Answer 208

• First death, terrence Higgins, in 1982
• By 1984, 400 deaths
• 1985, Edinburgh, 1/2 of heroin addicts had virus

Question 209

Medical breakthroughs in AIDS

Answer 209

• 1982 - Aids, Acquired Immune Deficiency Syndrome, is first used as a term.
• 1984 - HIV (human immunodeficiency virus) is isolated by Luc Montagnier of the Pasteur Institute in Paris and Robert Gallo of the US National Cancer Institute.
• 1985, AIDS test

Question 210

Conservative backlash against AIDS education

Answer 210

• Chief Rabbi (Norman Fowler): ‘all you’re doing is teaching people how to sin and get away with it’
• Adrien, the Moral Basis of Freedom: ‘it’s a disease ridden occupation, it’s a sterile production…it’s deviant and abnormal’
• ‘Churches that denounce the sin of sodom have a right to denounce it’
• The AIDS scare could cause a backlash against gays, government ministers believe’

Question 211

Primary Source: Thatcher’s opposition to an AIDS campaign

Answer 211

• Mrs Thatcher, is there any truth to the suggestion one hears that this government has been dragging its feet on AIDS because of your distaste for the whole subject
• –> ‘we shall have to be very explicit because I think that it’s only when people realise the full enormity of the problem that is facing us that they will be prepared to have things coming through the letterbox that otherwise they would’ve found unusual

Question 212

Primary Source: AIDS, Don’t Die of Ignorance (recap + diff details)

Answer 212

• because it has to deal with matters of health and sex, you may find some of the information disturbing
• it is not just a homosexual disease
• by the tie you read this, probably about 300 people will have died in the country. It is believed that a further 30 000 carry the virus
• risk from semen or vaginal fluid, oral or anal sex
• you cannot know who is infected and who isn’t…it is safest to stick to one faithful partner
• advises drug users not to share equipment
• don’t share tattoo/piercing equipment, toothbrush, razor

Question 213

Primary Source: AIDS, don’t die of ignorance campaign TV Ad

Answer 213

1) (1987)

• ‘There is now a danger that has become a threat to us all’
• by sexual intercourse with an infected person
• If you ignore AIDS it could be the death of you

2) 1988

• The more partners you have the greater the risk
• Both men and women can pass on virus
• Facts about AIDS/unsettling music cuts through scene of woman inviting man to stay for the night

Question 214

Tainted blood scandal

Answer 214

• The tainted blood scandal in the United Kingdom arose after 1,243 people with Haemophilia became infected with HIV, the virus that leads to acquired immune deficiency syndrome (AIDS),
• as a result of receiving contaminated clotting factor products supplied by the National Health Service (NHS) in the 1970s and 1980s.[1]
• Of the 1,243 victims who were co-infected with both hepatitis C and HIV, fewer than 250 are believed to survive as of 2017

Question 215

Hughes, Anthony (2006), HIV and drug policy

Answer 215

Emergence of HIV and perceived threat to individuals and communities, as pub hlth issue, led to refocusing of drug policies. Harm reduction approaches became important bc they recognized drug users may not necessarily halt drug use.

Reducing spread of infection through needle exchange schemes, for example, was regarded as more important for drug users and society than halting the consumption of drugs per say