The great undiscussable: Anal cancer, HPV, and gay men's health

Three Shots at Prevention: The HPV Vaccine and the Politics of Medicine's Simple Solutions

Volumn , Issue , 2010, Pages 61-90

  Epstein, Steven ^a  

^a NORTHWESTERN UNIVERSITY   (United States)

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EID: 79960841977     PISSN: None     EISSN: None     Source Type: Book    
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References (106)

1. Epigraph. Gayand Bi-Sexual Men Taking Gardasil, a video clip of a tele vi sion news segment, CBS-5, San Francisco, ca. April 5, 2007, posted on YouTube by vidwatch654, www.youtube.com/watch ?v = WSEfPYzOBd8 (accessed May 8, 2008).
2. As I explain later in this chapter, public discussions of the health issues I consider here have been systematically unclear about whether the referent is "gay men" (a category of collective identity) or "MSM" (a category based on behavior, in de pen dent of identity). This lack of clarity is by no means unusual; see Rebecca M. Young and Ilan H. Meyer, "The Trouble with 'MSM' and 'WSW': Erasure of the Sexual-Minority Person in Public Health Discourse", American Journal of Public Health 95, no. 7(2005):1144-1149. In this chapter I do not attempt to resolve such confusion. Instead, I simply employ the terminology used by actors whom I study.
3. Charlotte J. Haug, "Human Papillomavirus Vaccination-Reasons for Caution", New En gland Journal of Medicine 359, no. 8(2008):861-862;
4. Elizabeth Rosenthal, "The Evidence Gap: Drug Makers' Push Leads to Cancer Vaccines' Rise", New York Times, Aug. 19, 2008; chapters 1 and 9, this volume.
5. Chapters 5 and 13; TAC Issues Global Call for Affordable Access to HPV Vaccines in the Developing World (Web page), Oct. 28, 2008, Treatment Action Campaign, www.tac.org.za/community/node/2428 (accessed Nov. 11, 2008).
6. In other words, I see this study as involving the politics of citizenship, broadly construed, and the politics of biopo liti cal and sexual citizenship in particular. I understand citizenship to refer to differentiated modes of incorporation of individuals or groups fully or partially into the national polity through the articulation of notions of rights and responsibilities. Stuart Hall and David Held, "Citizens and Citizenship", in New Times: The Changing Face of Politics in the 1990s, ed. Stuart Hall and Martin Jacques (London: Verso, 1990), 173-188;
7. Gershon Shafir, ed., The Citizenship Debates: A Reader (Minneapolis: University of Minnesota Press, 1998). In a polity where health disparities are rampant, and where the biosciences have become influential in defining what is taken to be the essential natures of individuals and groups, biomedical authorities and technologies have come to play consequential roles in reproducing or challenging practices of social stratification and exclusion. That is, the struggles around what I have called biopo liti cal citizenship reflect not only that health and health care have been made into scarce resources that are inaccessible to many, but also that biomedical debates may be central to the processes by which lines of social cleavage are drawn.
8. Steven Epstein, Inclusion: The Politics of Difference in Medical Research (Chicago: University of Chicago Press, 2007), 20-21, 277-302. In recent years, scholars also have become increasingly cognizant of the centrality of sexuality to the modern politics of belonging, and the concept of sexual citizenship has been put forward to describe both how sexual rights are pursued or denied and how distinct "sexual minorities" demand equal standing as politi cal actors. For one of many examples
9. see Diane Richardson, "Sexuality and Citizenship", Sociology 32, no. 1(1998):83-100. On the specific dilemmas that confront gay health activists as they seek biopo liti cal and sexual citizenship
10. see also Steven Epstein, Impure Science: AIDS, Activism, and the Politics of Knowledge (Berkeley: University of California Press, 1996);
11. Steven Epstein, "Sexualizing Governance and Medicalizing Identities: The Emergence of 'State-Centered' LGBT Health Politics in the United States", Sexualities 6, no. 2(2003):131-171.
12. David Hess, Alternative Pathways in Science and Industry: Activism, Innovation, and the Environment in an Era of Globalization (Cambridge, MA: MIT Press, 2007).
13. Robert N. Proctor, Cancer Wars: How Politics Shapes What We Know and Don't Know about Cancer (New York: Basic Books, 1995), 8.
14. Anal Cancer (Web page), 2008, National Cancer Institute, National Institutes of Health, www.cancer.gov/cancertopics/types/anal/(accessed Sept. 15, 2008).
15. David P. Ryan, Carolyn C. Compton, and Robert J. Mayer, "Carcinoma of the Anal Canal", New England Journal of Medicine 342, no. 11(2000):792.
16. J. R. Daling, N. S. Weiss, L. L. Klopfenstein, L. E. Cochran, W. H. Chow, and R. Daifuku, "Correlates of Homosexual Behavior and the Incidence of Anal Cancer", Journal of the American Medical Association 247, no. 14(April 9, 1982):1988-1989. The article began by noting "recent reports⋯ that male homosexual behavior predisposes" to a variety of sexually transmitted infections and diseases (1988). On the emergence of biomedical concern with sexually transmitted infections among gay men in the late 1970s and early 1980s (before or coincident with the public emergence of the AIDS epidemic) - and how the sometimes stigmatizing forms that these medical claims took influenced initial conceptualizations of AIDS
17. Daling et al., "Correlates of Homosexual Behavior", 1990.
18. Young and Meyer, "Trouble with 'MSM' and 'WSW.' "
19. On the implications of the identity-practice distinction in gay men's health, see Epstein, "Sexualizing Governance", 158-160.
20. T. Croxson, A. B. Chabon, E. Rorat, and I. M. Barash, "Intraepithelial Carcinoma of the Anus in Homosexual Men", Diseases of the Colon and Rectum 27, no. 5(1984):325-330;
21. I. H. Frazer, G. Medley, R. M. Crapper, T. C. Brown, and I. R. Mackay, "Association between Anorectal Dysplasia, Human Papillomavirus, and Human Immunodeficiency Virus Infection in Homosexual Men", Lancet, Sept. 20, 1986, 657-660.
22. Joel Palefsky, professor of medicine at UCSF, interview by the author, San Francisco, Dec.10, 2008.
23. J. M. Palefsky, J. Gonzales, R. M. Greenblatt, D. K. Ahn, and H. Hollander, "Anal Intraepithelial Neoplasia and Anal Papillomavirus Infection among Homosexual Males with Group IV HIV Disease", Journal of the American Medical Association 263, no. 21(June 6, 1990):2911. The CD4 count is a mea sure of immune function thatreflects the progression of HIV disease.
24. Daling et al., "Correlates of Homosexual Behavior", 1990.
25. J. M. Palefsky, E. A. Holly, M. L. Ralston, and N. Jay, "Anal Human Papillomavirus Infection in HIV Positive and HIV Negative Men (Conference News)", AIDS We ekly Plus, Dec.8, 1997, 30. Palefsky indicated later that he was the one who popu larized this statistical claim. Palefsky interview. Elsewhere Palefsky has noted that the incidence of cervical cancer in U. S. women before the widespread use of Pap smears was 40 to 50 per 100, 000 and that the introduction of Pap smears has brought the figure down to 8 per 100, 000.
26. Joel Palefsky, Human Papillomavirus Vaccines and HPV-Associated Anogenital Disease in HIV-Seropositive Men and Women: A New Era? (Webcast), May 7, 2007, International AIDS Society Advanced CME course on Improving the Management of HIV Disease, http://69.9.172.142/Mediasite/Viewer/?cid=b6c27abe- ac90-494f-94da-bba6bbcd7367 (accessed Sept. 12, 2008).
27. On the "black-boxing" of statistical claims about gay populations, see also Tom Waidzunas, "Gay Youth Suicide and Dynamic Nominalism: The Troubled Project of Defining a Social Problem with Statistics", 2008, Department of Sociology, University of California, San Diego.
28. Palefsky et al., "Anal Human Papillomavirus Infection", 30.
29. Alan McCord, "Risk for Invasive Anal Cancer High among HIV-Positive People" (Web news report), Feb.11, 2009, Project Inform, www.projectinform.org/news/09-croi/021109.shtml (accessed March 13, 2009).
30. Palefsky, Human Papillomavirus Vaccines.
31. C. Piketty, T. M. Darragh, M. Da Costa, P. Bruneval, I. Heard, M. D. Kazatchkine, and J. M. Palefsky, "High Prevalence of Anal Human Papillomavirus Infection and Anal Cancer Precursors among HIV-Infected Persons in the Absence of Anal Intercourse", Annals of Internal Medicine 138, no. 6(2003):453-459.
32. Alan Nyitray, Carrie M. Nielson, Robin B. Harris, Roberto Flores, Martha Abrahamsen, Eileen F. Dunne, and Anna R. Giuliano, "Prevalence of and Risk Factors for Anal Human Papillomavirus Infection in Heterosexual Men", Journal of Infectious Diseases 197, no. 12(2008):16761684;
33. Palefsky, Human Papillomavirus Vaccines;
34. Joel M. Palefsky, "HPV Infection in Men", Disease Markers 23, no. 4(2007):261-272. See also the data provided on UCSF's Anal Neoplasia Clinic Web site, www.analcancerinfo.ucsf.edu/.
35. Joel Palefsky, Jen Hecht, Jason Riggs, and Michael Scarce, "Needed: Routine HPV Vaccines and Pap Smears for Gay and Bisexual Men", San Francisco Chronicle, April 24, 2007, B-7.
36. See National Cancer Institute, www.cancer.gov/cancertopics/types/anal (accessed March 20, 2009).
37. Monica J. Casper and Adele E. Clarke, "Making the Pap Smear into the 'Right Tool' for the Job: Cervical Cancer Screening in the USA, circa 1940-95", Social Studies of Science 28, no. 2(1998):256.
38. Palefsky, Human Papillomavirus Vaccines.
39. The idea of performing a Pap smear of the anus may be seen as an example of how the users of technologies may often adopt and adapt them in ways that designers did not intend. See Nelly Oudshoorn and Trevor Pinch, eds., How Users Matter: The Co-Construction of Users and Technology (Cambridge, MA: MIT Press, 2003). The case also raises questions about the extension of a technology across gender categories. For another example
40. see Nelly Oudshoorn, The Male Pill: A Biography of a Technology in the Making (Durham, NC: Duke University Press, 2003).
41. Epstein, "Sexualizing Governance", 140.
42. Epstein, Impure Science.
43. Kenneth Mayer, "Beyond Boulder: A Glance Back and the Road Ahead", Journal of the Gay and Lesbian Medical Association 4, no. 1(2000):1-2;
44. Eric Rofes, "Resuscitating the Body Politic: Creating a Gay Men's Health Movement", Baltimore Alternative, Aug. 8, 2000, 21;
45. Eric Rofes, "Why Boulder? Why Gay Men's Health? Why Now?" opening plenary at Gay Men's Health Summit, Boulder, CO, July 29 to Aug.1, 1999, Boulder County AIDS Project, www.bcap.org/html/pages/education/healthsummit/ hs1999/keynote.html (accessed June 1, 2000);
46. Michael Scarce, "The Second Wave of the Gay Men's Health Movement: Medicalization and Cooptation as Pitfalls of Progress", editorial, Journal of the Gay and Lesbian Medical Association 4, no. 1(2000):3-4;
47. Michael Scarce, Smearing the Queer: Medical Bias in the Health Care of Gay Men (New York: Harrington Park, 1999).
48. Eric Rofes, "What Is a Healthy Gay Man?" opening plenary address, presented at the Gay Men's Health Summit, Boulder, CO, July 19-23, 2000.
49. The Boulder Summit-July 29-August 1, 1999: Launching a Multi-Issue, Multicultural Gay Men's Health Movement, www.managingdesire.org/boulder.html.
50. On the durability of infrastructures and the consequent, potentially harmful effects on the individuals who run up against them, see Geoffrey C. Bowker and Susan Leigh Star, dSorting Things Out: Classification and Its Consequences (Cambridge, MA: MIT Press, 1999).
51. Scarce, Smearing the Queer, 116.
52. Hole Health: A Forum for Gay Men on HPV, the Vaccine, and Anal Cancer (podcast), April 9, 2007, STOP AIDS Project, www.archive.org/details/STOP-AIDS- Project-HPV-podcast (accessed May 7, 2008).
53. Sue J. Goldie, Karen M. Kuntz, Milton C. Weinstein, Kenneth A. Freedberg, and Joel M. Palefsky, "Cost-Effectiveness of Screening for Anal Squamous Intraepithelial Lesions and Anal Cancer in Human Immunodeficiency Virus-Negative Homosexual and Bisexual Men", American Journal of Medicine 108, no. 8(2000):644.
54. See also Sue J. Goldie, Karen M. Kuntz, Milton C. Weinstein, Kenneth A. Freedberg, Mark L. Welton, and Joel M. Palefsky, "The Clinical Effectiveness and Cost-Effectiveness of Screening for Anal Squamous Intraepithelial Lesions in Homosexual and Bisexual HIV-Positive Men", Journal of the American Medical Association 281, no. 19(1999):1822-1829.
55. Paul Volberding, "Looking Behind: Time for Anal Cancer Screening", American Journal of Medicine 108, no. 8(2000):674-675.
56. On the rise to prominence of evidence-based medicine as a medical movement, see Stefan Timmermans and Marc Berg, The Gold Standard: The Challenge of Evidence-Based Medicine and Standardization in Health Care (Philadelphia: Temple University Press, 2003).
57. David Tuller, "Some Urge Type of Pap Test to Find Cancer in Gay Men", New York Times, Feb. 18, 2003.
58. Constance A. Benson, Jonathan E. Kaplan, Henry Masur, Alice Pau, and King K. Holmes, "Treating Opportunistic Infections among HIV-Infected Adults and Adolescents", Morbidity and Mortality Weekly Report 53(2004):1-112, available at www.cdc.gov/mmwr/preview/mmwrhtml/rr5315a1.htm;
59. Palefsky interview. By contrast, the New York State Department of Health AIDS Institute now recommends anal Pap smears annually for MSM, any patient with a history of anal warts, and women with abnormal cervical or vulvar histology. Human Papillomavirus (HPV (Web document), Sept. 2007, Office of the Medical Director, New York State Department of Health AIDS Institute, http://std.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=std&cdn= health&tm=39&gps=29-732-1020-588&f=00&su=p284.9.336.ip-p736.8. 336.ip-&tt=2&bt=1&bts=1&zu=http%3A//www.hivguidelines.org/ GuideLine.aspx%3FguideLineID%3D102 (accessed May 11, 2008).
60. Tim Horn, "Covering Our Asses: A Healthcare Provider Questions CDC HPV Information" (Web news), May 10, 2006, POZ, www.poz.com/articles/761- 11149.html (accessed Sept. 16, 2008).
61. Palefsky et al., "Needed", B-7.
62. Casper and Clarke, "Making the Pap Smear"
63. Nicholas Cheonis, "Anal Neoplasia: A Growing Concern", BETA, Winter 2001.
64. "HPV Vaccine on the Way-But for Whom?" CHAMP HHS Watch, June 2005, 1-3.
65. Ben Townley, "Study Links Anal Cancer with Gay Sex Habits" (Web news), June 16, 2005, Gay.com U. K., www.gay.com/news/article.html ?2005/06/16/4 (accessed Sept. 14, 2008).
66. David Tuller, "New Vaccine for Cervical Cancer Could Prove Useful in Men, Too", New York Times, Jan. 30, 2007;
67. Shari Roan, "HPV: Men Can Get It Too", Los Angeles Times, March 19, 2007, F1.
68. Roan, "HPV"; Tuller, "New Vaccine." On the recent salience of debates about the legitimacy of medical extrapolation across sex (or other) categories
69. "They don't know if it will stop them from getting cancer, but gay and bisexual men in San Francisco are taking a vaccine meant to prevent cancer in females", was how the local San Francisco TV news put it, in a version posted on its Web site under the heading "Some Gay Men in S. F. Getting HPV Vaccine for Women", April 6, 2007, CBS, http://cbs3.com/health/HPV. Gardasil.gay.2.282840.html (accessed May 11, 2008).
70. See also Michelle Roberts, "Gay Men Seek 'Female Cancer' Jab" (Web report), Feb.23, 2007, BBC News, http://news.bbc.co.uk/go/pr/fr/-/2/hi/ health/6342105.stm (accessed May 13, 2008). The coding of a vaccine as "female" or "male" is reminiscent of the gendering of hormones early in the twentieth century;
71. see Nelly Oudshoorn, Beyond the Natural Body: An Archeology of Sex Hormones (London: Routledge, 1994) (thanks to Nancy Cott for reminding me of this connection).
72. Hole Health.
73. From a public health standpoint, it may still be advisable to vaccinate those who have already been infected with HPV in order to protect them from viral types to which they remain unexposed. However, in one recent, Internet-based study of gay and bisexual men, interest declined when men were told that the vaccine's effectiveness declined after the onset of sexual activity. Paul L. Reiter, Noel T. Brewer, Annie-Laurie McRee, and Jennifer S. Smith, "Acceptability of HPV Vaccine among Gay and Bisexual Men", paper presented at the annual meeting of the American Public Health Association, Philadelphia, PA, Oct.10, 2009.
74. Hole Health.
75. In 2008 the New York Times reported that Glaxo was conducting such a trial in Finland. Jan Hoffman, "Vaccinating Boys for Girls' Sake?" New York Times, Feb.24, 2008, 1.
76. "CDC Fact Sheet: HPV and Men", 2007, U. S. Centers for Disease Control and Prevention, Atlanta, GA. See also Centers for Disease Control and Prevention, www.cdc.gov/std/hpv/stdfact-hpv-and-men.htm.
77. Tuller, "New Vaccine"
78. The Web site, which is no longer active because the trial is no longer recruiting research participants, was www.hpvvaccinetrials.com. Archived versions dating from 2006 can be found at Internet Archive Wayback Machine, http://web.archive.org/web/*/www.hpvvaccinetrials.com.
79. "HPV Vaccine Can Prevent Genital Warts in Men" (Web news), Nov. 13, 2008, msnbc.com, www.msnbc.msn. com/id/27697369/(accessed March 13, 2009);
80. Rob Stein, "A Vaccine Debate Once Focused on Sex Shifts as Boys Join the Target Market", Washington Post, March 26, 2009.
81. "FDA Approves New Indication for Gardasil to Prevent Genital Warts in Men and Boys." U. S. Food and Drug Administration News Release, October 16, 2009, http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm187003. htm.
82. David Mitchell, "ACIP Supports 'Permissive Use', but Not Routine Use, of Gardasil in Males." American Academy of Family Physicians, Oct. 27, 2009, www.aafp.org/online/en/home/publications/news/news-now/clinical-care- research/20091027acip-hpv-vacc.html.
83. In one Internet-based survey, 79% of gay and bisexual men (versus 61% of heterosexual men) had heard of HPV, and of them 33% of gay and bisexual men (versus 14% of heterosexual men) identified it as causing anal cancer. Terence W. Ng, Noel T. Brewer, Paul L. Reiter, Jennifer S. Smith, and v1Annie-Laurie McRee, "Men's Knowledge and Beliefs about HPV-Related Diseases", paper presented at the annual meeting of the American Public Health Association, Philadelphia, Nov. 9, 2009.
84. Historically colon cancer has shared some of this stigma, but in that case the stigma appears to have receded over time because of greater familiarity with the illness. Perhaps a turning point in visibility occurred in 1985, when President Ronald Reagan had surgery to treat colon cancer. See Martin L. Brown and Arnold L. Potosky, "The Presidential Effect: The Public Health Response to Media Coverage about Ronald Reagan's Colon Cancer Episode", Public Opinion Quarterly 54 (1990).
85. An exception was an ABC news report, two days after Fawcett's death, about the stigma surrounding anal cancer, which mentioned the probable causal link with HPV infection. Dan Childs and Chitale Radha, "Farrah Fawcett's Anal Cancer: Fighting the Stigma", June 27, 2009, ABC News report, http://abcnews.go.com/Health/story ?id = 7939402 & page = 1 #.
86. These discussions groups were conducted by Giovanna Chesler as part of her "Tune in HPV" project promoting critical awareness and discussion of HPV (personal communication; see also chapter 8 and Tune in HPV, www.tuneinhpv. com/home/home.htm).
87. My discussion in this section is informed by recent work in queer studies on the shame-pride dialectic. As David Halperin and Valerie Traub have observed, modern mainstream gay politics is founded on a notion of "gay pride" that both presupposes and never fully moves beyond a historical residue of shame. David M. Halperin and Valerie Traub, e d s., Gay Shame (Chicago: University of Chicago Press, 2009). On the politics of sexual shame
88. see also Janice M. Irvine, "Shame Comes out of the Closet", Sexuality Research and Social Policy 6, no. 1(2009):70-79.
89. "New HPV Vaccine Hoped to Benefit Men" (Web article), Jan. 31, 2007, Gay. com, www.gay.com/news/article.html ?2007/01/31/4 (accessed May 13, 2008).
90. Hole Health.
91. William F. Buckley Jr., "Steps in Combating the AIDS Epidemic" (op-ed), New York Times, March 18, 1986. On this point
92. One gay man, identified as R. H. K., describes such an experience in a narrative posted on Tune in HPV, "a web tele vi sion channel designed to raise awareness about the human papillomavirus through expression and entertainment" that was created by Giovanna Chesler (see chapter 8). In the narrative, R. H. K. expresses great frustration when a dermatologist who diagnoses his anal warts lectures him for having had unprotected anal sex and appears disinclined to believe his denial of such activity. R. H. K., "A Queer Story" (submitted narrative), Dec. 2008, Tune in HPV, www.tuneinhpv. com/home/home.htm (accessed March 13, 2009).
93. On the cultural meanings assigned to the anus and anal sex within the gender and sexual order, see Hocquenghem, Homosexual Desire, chap. 4;
94. Leo Bersani, "Is the Rectum a Grave?" October 43(1987):197-222.
95. More recently, the National LGBT Cancer Network, founded in 2007, has sought to highlight the risk of a variety of cancers among LGBT individuals. See National LGBT Cancer Network, www.cancer-network.org/.
96. Matthew Waites, The Age of Consent: Young People, Sexuality, and Citizenship (Houndmills, Basingstoke, En gland: Palgrave Macmillan, 2005).
97. Hole Health. As noted previously, vaccination may be advisable for those who have already been infected with HPV in order to protect them from viral types to which they have not yet been exposed.
98. Anne Szarewski, quoted in Roberts, "Gay Men Seek 'Female Cancer' Jab"
99. On the cultural disavowal of the "pregay" child, see Eve Kosofsky Sedgwick, "How to Bring Your Kids Up Gay: The War on Effeminate Boys", Social Text, no. 29(1991):18-27.
100. Gypsyamber D'Souza, Aimee R. Kreimer, Raphael Viscidi, Michael Pawlita, Carole Fakhry, Wayne M. Koch, William H. Westra, and Maura L. Gillison, "Case-Control Study of Human Papillomavirus and Oropharyngeal Cancer", New En gland Journal of Medicine 356, no. 19(2007):1944-1956;
101. Nicholas Bakalar, "Oral Cancer in Men Associated with HPV", New York Times, May 13, 2008;
102. Stephanie Desmon; "HPV-Related Oral Cancers Rise among Younger Men", Baltimore Sun, April 14, 2008
103. Jeremy Manier, "Researchers Blame HPV for Rise in Throat Cancer", Chicago Tribune, June 8, 2008, 1;
104. Coco Masters, "Oral Sex Can Add to HPV Cancer Risk", Time, May 11, 2007. Somewhat i n cont rast to t he opt imist ic tone of ma ss media reports, Joel Pa lefsky believes that "proving that the vaccine will reduce oral cancer will be even more challenging than anal or cervical cancer", because there is "no easily recognizable oral cancer precursor lesion. " Palefsky interview.
105. Masters, "Oral Sex Can Add to HPV Cancer Risk"
106. Stein, "Vaccine Debate"; Rachel Zelkowitz, "HPV Casts a Wider Shadow", Science 323, no. 5914(2009):580-581