HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright 1995 by William I. Johnston
New York: Insight Books-Plenum Press

Notes

PROLOGUE: BOCCACCIO'S LESSON

[1]

Giovanni Boccaccio, The Decameron of Giovanni Boccaccio, trans. Frances Winwar (New York: The Modern Library, 1955), pp. xxiii-xxvii.

INTRODUCTION: CLIMBING TO ANGELS LANDING

[1]

Human immunodeficiency virus (HIV) is generally considered the cause of acquired immunodeficiency syndrome (AIDS). Some theorists dispute this, suggesting that HIV is unrelated to AIDS or is just one of several cofactors necessary for disease progression. I cannot say whether these theorists are correct. Nonetheless, my investigation of the ways in which HIV-negative gay men have been affected by the epidemic -- and of the significance of HIV testing -- does not depend on knowing the actual cause of AIDS. If we find out that something other than HIV causes AIDS, this does not change the historical fact that our fears, concerns, and anxieties about the epidemic were largely shaped by our belief that HIV causes AIDS.

[2]

I use the phrase "HIV testing" in this book because it is more commonly used by gay men and is shorter than "HIV-antibody testing." The latter phrase is more accurate, because the ELISA and Western-Blot tests currently in use detect the presence of antibodies to HIV, rather than HIV itself.

CHAPTER 5: CONSIDERING TESTING

[1]

For example, a 1991 Michigan survey of 1,689 men who have sex with men found that 514 had not been tested. The most common reasons for not testing were "I'm not at risk" (43.4 percent), "I'm not sure I could handle a positive test result" (34.4 percent), and "I don't want to know the results" (26.1 percent). Less common reasons were "I was afraid that having the test might lead to discrimination against me" (22.6 percent), "I was worried that others would be told my test results" (14.6 percent), and "I don't think the test has much value" (7.4 percent). Multiple responses were allowed. See Bureau of Infectious Disease Control and Midwest AIDS Prevention Project, HIV-Related Attitudes and Risk Behaviors among Men Who Have Sex with Men: Findings of the Fourth Michigan Survey (Lansing: Michigan Department of Public Health, 1992), p. 5 and table 12.

Similar results were found in 1990 surveys in Massachusetts and North Carolina. See AIDS Action Committee, Community Education Unit, A Survey of AIDS-Related Knowledge, Attitudes and Behaviors Among Gay and Bisexual Men in Greater Boston, Massachusetts: A Report to Community Educators (Boston: AIDS Action Committee, 1991), pp. 1, 27; and North Carolina Department of Environment, Health, and Natural Resources, Division of Epidemiology, An HIV-Related Community Assessment Survey of Gay and Bisexual Men in North Carolina: A Report to Community Health Educators (Raleigh, NC: Department of Environment, Health, and Natural Resources, 1993), pp. 11-12.

[2]

Discussions of the lack of positive correlation between HIV testing and risk reduction are found in the following essays, collected in The AIDS Epidemic: Private Rights and the Public Interest, ed. Padraig O'Malley (Boston: Beacon Press, 1989): Marshall Forstein, "Understanding the Psychological Impact of AIDS: The Other Epidemic"; Michael Gross, "HIV Antibody Testing: Performance and Counseling Issues"; and Susanne B. Montgomery and Jill G. Joseph, "Behavioral Change in Homosexual Men at Risk for AIDS: Intervention and Policy Implications."

CHAPTER 9: REACTIONS TO TESTING NEGATIVE

[1]

Simon Watney, "The Possibilities of Permutation: Pleasure, Proliferation, and the Politics of Gay Identity in the Age of AIDS," in Fluid Exchanges: Artists and Critics in the AIDS Crisis, ed. James Miller (Toronto: University of Toronto Press, 1992), p. 347. Italics in the original.

[2]

Because it takes some time after infection with HIV for antibodies to develop, the tests currently in use -- which detect antibodies rather than HIV itself -- are not foolproof. Experts disagree about the time it takes for antibodies to be produced, but in general, most people infected with HIV develop antibodies within six months.

[3]

The chance of testing error is minuscule but not nonexistent. The preliminary test currently in use, the ELISA test, is designed to err in the direction of telling people who are uninfected that they are infected, rather than telling people who are infected that they are uninfected.

[4]

In San Francisco and a few other urban gay communities in the United States, the number of HIV-positive gay men is estimated to be equal to or slightly greater than the number of HIV-negative gay men. Because there is no easy way to establish how many gay men are in any base population, such estimates are hard to evaluate.

[5]

From a draft manuscript by Walt Odets. For more about the psychological issues facing HIV-negative gay men, see Walt Odets, In the Shadow of the Epidemic: Being HIV-Negative in the Age of AIDS (Durham, NC: Duke University Press, forthcoming).

[6]

Marshall Forstein, "Suicidality and HIV in Gay Men," in Therapists on the Front Line: Psychotherapy with Gay Men in the Age of AIDS, ed. Steven A. Cadwell, Robert A. Burnham, and Marshall Forstein (Washington, DC: American Psychiatric Press, 1994), p. 121.

CHAPTER 11: DIVISION BY HIV STATUS

[1]

Charles Barber, "AIDS Apartheid," NYQ, 3 November 1991, p. 42.

[2]

Ibid., p. 45.

[3]

Ibid., p. 68.

[4]

Ibid., p. 44.

[5]

Dudley Clendinen, "When Negative Meets Positive," GQ, October 1994, pp. 238-239.

[6]

Ibid., p. 239.

[7]

Ibid.

[8]

For more on the analogy between the biological and social responses to HIV infection, see Mary Catherine Bateson and Richard Goldsby, Thinking AIDS: The Social Response to the Biological Threat (New York: Addison-Wesley, 1988).

CHAPTER 15: NEGATIVE-NEGATIVE COUPLES

[1]

Susan Kippax, June Crawford, Mark Davis, et al., "Sustaining Safe Sex: A Longitudinal Study of a Sample of Homosexual Men," AIDS 7.2 (1993), pp. 257-263.

[2]

The Kippax study notes that agreements about sex outside relationships are common. Among the 82 men who had regular partners (a sample that included HIV-positive, HIV-negative, and untested men), 74 percent had a clear agreement on sexual practice outside their regular relationship. Among those men, 39 percent had agreed to no sex outside the relationship, 23 percent had agreed to "safe sex" outside the relationship but not in the relationship, and 36 percent had agreed to "safe sex" both outside the relationship and in the relationship. This last group contained those HIV-negative men who practice safer sex even with HIV-negative partners.

[3]

For example, see Gay Men's Health Centre, "Relationships: Your Choice" (South Yarra, Australia: Victorian AIDS Council, 1994), which presents a list of steps that gay men in negative-negative couples might take before deciding not to use condoms. Among the steps are these: "Discuss and promise each other that you will avoid anal sex outside the relationship, or that if you or your partner fuck with anyone else, condoms will be used....Discuss and promise each other that if either of you slips-up or has an accident with unsafe sex outside the relationship, you will tell the other immediately and go back to safe sex until you've both been tested again....Agree that either partner can insist on using condoms again ... and that it won't mean the end of the relationship. Don't punish your partner for being honest."

See also AIDS Committee of Toronto, "Can You Relate? Safer Sex in Gay Relationships: Think about It, Talk about It" (Toronto, Canada: AIDS Committee of Toronto, 1994), which offers this: "Some gay men, when they get into a relationship, stop using condoms for anal sex (fucking) because they feel that caring for someone or being in love is all the protection they need....If you are both truly HIV-, and you both never do anything to put yourselves at risk outside the relationship, you can stop using condoms. But it often isn't that simple....Ultimately, the choice is up to you. But decisions about condom use need to be based on more than just caring for someone. If you don't think you, as a couple, are willing and able to deal with the many issues that are involved, then play it safe."

CHAPTER 17: DECIDING WHAT'S UNSAFE

[1]

Robyn M. Dawes, Rational Choice in an Uncertain World (San Diego: Harcourt Brace Jovanovich, 1988), p. 29.

[2]

The passage Tucker referred to is from Shakespeare's Henry V, act V, scene ii, where Henry first addresses an interpreter and then Katharine herself:

King Henry. It is not a fashion for the maids in France to kiss before they are married, would she say?...O Kate, nice customs curtsy to great kings. Dear Kate, you and I cannot be confined within the weak list of a country's fashion. We are the makers of manners, Kate, and the liberty that follows our places stops the mouth of all find-faults....

CHAPTER 19: RETESTING AND SEROCONVERSION

[1]

"Seroconversion" is sometimes used synonymously with "HIV infection," but it is helpful to make a distinction. Technically, "seroconversion" refers not to HIV infection but to a biological event made evident by two HIV tests: the movement from the absence to the presence of HIV antibodies in the bloodstream. In popular usage, "seroconversion" often refers to the psychological event of learning one is HIV-positive after learning one was HIV-negative.

[2]

Mattia Morretta, ed., Dire, fare, baciare...Il sesso al tempo dell'AIDS (Milano: Associazione Solidarietà Aids, 1989), pp. 11-12. The translation is mine.

[3]

Thomas Moon, "Survivor Guilt in HIV-Negative Gay Men," San Francisco Sentinel, 14 November 1991.

[4]

Michelangelo Signorile, "Negative Pride," Out, March 1995, p. 24.

[5]

These statements are based on the report's estimates of rates of seroconversion for various age groups: 4.4 percent for men ages 20-25, 2.5 percent for men ages 25-30, 1.5 percent for men ages 30-45, and 1.0 percent for men ages 45-55. See D. R. Hoover et al., "Estimating the 1978-1990 and Future Spread of Human Immunodeficiency Virus Type 1 in Subgroups of Homosexual Men," American Journal of Epidemiology 134.10 (1991), pp. 1190-1205.

[6]

In reality, younger gay men probably have higher seroconversion rates than older gay men. Mathematical models can take this into account by multiplying expressions of the form (1 - r)^xusing different rates for different ranges of years. The estimate in the Hoover study cited above, for example, that only half of a group of uninfected 20-year-olds is likely to remain uninfected by age 55, is supported in this way:

(1 - 0.044)^5(1 - 0.025)^5(1 - 0.015)^15(1 - 0.010)^10= 0.507

Realistic goals for seroconversion rates will have to acknowledge that rates are likely to be different for different age groups.

[7]

These results are preliminary findings of the Sexually Active Men (SAM) study funded by the federal Centers for Disease Control and Prevention and the National Institute for Allergies and Infectious Diseases. The study included 1,769 participants but excluded men who reported never having anal sex in the previous year. See David Olsen, "Study: Gay Men Seroconverting at High Rate," Bay Windows, 26 January 1995.

CHAPTER 21: HIV-NEGATIVE IDENTITY

[1]

The idea that someone might tattoo himself as "HIV-" seems preposterous. Interestingly, however, a "-" symbol can be changed into a "+" symbol by adding a vertical stroke. In perverse moments of fancy, I imagine that someone who has tattooed himself as "HIV-" could change it to "HIV+" if he seroconverts. In this way, the apparent permanence of an "HIV-" tattoo contains an implicit flexibility that reflects the impermanence of HIV-negative status and the one-way nature of HIV infection.

The same tension between apparent permanence and implicit flexibility is found at the Vietnam Veterans Memorial in Washington, D.C. When prisoners of war and those listed as missing in action are found to have been killed in action, the cross symbols next to their names are changed to diamond shapes by carving away additional stone.

CONCLUSION: LOOKING TO THE FUTURE

[1]

Walt Odets, "The Secret Epidemic," OUT/LOOK, Fall 1991, p. 49.

[2]

Susan Sontag, The Way We Live Now (New York: Noonday Press, 1991). Originally published as a short story in the New Yorker, 24 November 1986, pp. 42-51.

Contents · Foreword · Prologue · Introduction
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23
Conclusion · Appendix A B C · Notes · Contributors

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