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Sexualities

Sexualizing Governance and Medicalizing Identities: The Emergence of `State-Centered' LGBT Health Politics in the United States
Steven Epstein Sexualities 2003 6: 131 DOI: 10.1177/1363460703006002001 The online version of this article can be found at: http://sex.sagepub.com/content/6/2/131

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Abstract In recent years, state-centered LGBT (lesbian, gay, bisexual, and transgendered) health advocacy has emerged as a distinctive form of health activism in the United States. These advocates seek the inclusion of lesbians, gay men, bisexuals, and transgendered persons as subjects and objects of biomedical research. Much of their attention has focused on changing the policies, practices, and priorities of agencies of the US Department of Health and Human Services, including the National Institutes of Health. This emphasis has developed out of the convergence of two trajectories: the histories of specic activist movements that show an increasing willingness to engage directly with the state; and the adoption by the state of a policy paradigm for including special populations within the concerns of federal health agencies. The impact of state-centered LGBT health advocacy can be traced in a number of specic domains. However, the partial successes of these efforts raise troubling questions about the medicalization of LGBT identities and the limitations of biomedical citizenship. Keywords health activism, health policy, LGBT health, medicalization, the state

Steven Epstein
University of California, San Diego

Sexualizing Governance and Medicalizing Identities: The Emergence of State-Centered LGBT Health Politics in the United States
Gays and lesbians are hailing their new inclusion in the national blueprint for good health but call it only a rst step toward recognizing their unique needs, declared the Los Angeles Times in April 2001 (Allen, 2001). This national blueprint, known ofcially as Healthy People 2010, is an encyclopedic policy document published by the US Department of Health Sexualities Copyright 2003 SAGE Publications (London, Thousand Oaks, CA and New Delhi)
Vol 6(2): 131171[1363-4607(200305)6:2; 131171; 032428]

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and Human Services that sets the prevention agenda for the Nation for the coming decade (US DHHS, 2000a). That sexual orientation and gay and lesbian had been included as relevant categories in the document in response to lobbying and public pressure and that the Los Angeles Times deemed such inclusion newsworthy are indicators of a signicant historical development: the rise, and emergence into public consciousness, of what I will call state-centered lesbian, gay, bisexual, and transgender (LGBT) health politics in the United States. State-centered LGBT health politics involves concerted efforts by advocates and researchers to make demands on the state for inclusion and incorporation demands to institutionalize LGBT (or, often, just lesbian and gay)1 health as a formal concern of public health and health research bureaucracies. At the crux of state-centered advocacy is the claim that lesbians, gay men, bisexuals, and transgendered persons have distinctive health concerns and will benet from research that nds them, counts them, studies them, and compares them with others. Thus the statecentered approach takes categorical identities to be the foundation of a health promotion and biomedical research strategy. While state-centered politics has been conducted in relation to federal, state-level, and local government in the US, I will emphasize what I take to be the most signicant recent target: the US Department of Health and Human Services (DHHS) and its key, health-related component agencies, such as the National Institutes of Health (NIH). The relative successes of statecentered LGBT health advocacy in relation to the DHHS are suggested not simply by inclusion in Healthy People 2010, but by a series of related developments that I will discuss. These include the publication in 1999, with DHHS funding, of a landmark report (Solarz, 1999) on lesbian health by the inuential Institute of Medicine of the National Academy of Sciences; the addition of sexual orientation questions as demographic items on important federal health surveys and major NIH-funded clinical studies; the establishment at the DHHS of an Interagency Steering Committee on Health Disparities Related to Sexual Orientation which, among other things, has bruited the issue of whether the DHHS should establish an Ofce of Lesbian and Gay Health; and the release by the NIH in May 2001 of a program announcement calling for the submission of grant proposals for research on LGBT populations. To be sure, demands by lesbians and gay men for ofcial state recognition of their health needs are not entirely new, but what is new is for the state to be listening, at least with regard to any health problem or condition other than HIV/AIDS. While the Clinton administration (which served from January 1993 to January 2001) provided especially fertile soil for many of these initiatives, I will suggest that the seeds for a state-centered LGBT health politics were sown during the Republican 132

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administrations that preceded it. Furthermore, at least some of the momentum generated during the Clinton years has carried over into the administration of George W. Bush. There is no simple way of telling the story of the rise of state-centered LGBT health advocacy, because this is no isolated development. On one hand, the threads of this history intertwine with those of a series of grassroots social movements explicitly focused on LGBT health concerns. These movements include the lesbian health movement, the AIDS activist movement, breast cancer activism, and recent grassroots organizing around gay mens health. On the other hand, the capacity of LGBT health advocates to gain access at the federal level has depended upon the enactment of a noteworthy series of reforms of federal health research policies that I chart more fully in the broader research project of which this article is part. Beginning in the 1980s and over the course of the 1990s, a diverse assortment of health advocates (including activists, researchers, health professionals, and state employees) complained that women, racial and ethnic minorities, children, and the elderly had been systematically underrepresented as subjects in federally-funded clinical research and in new drug development in the United States. Decrying a one size ts all approach to medicine that was believed to take heterosexual, adult white men as the standard human, these actors insisted that health research institutions attend to the particularities of distinct identities. In response, new legislation and federal policies sought specically to include these groups within research populations and to study differences across groups. Once this new policy paradigm (Hall, 1993) was sedimented into place as a way for the DHHS to respond to what it terms special populations, it then became easier for other disenfranchised constituencies, such as lesbians, gay men, bisexuals, and transgendered persons, to call for an extension of the paradigm to cover them as well. Thus state-centered LGBT health politics is the outgrowth of an intricate history of activism and advocacy that has seized on a variety of political opportunities. The rise of state-centered LGBT health politics raises crucial questions about the politics of sexuality, health, identity, and belonging. In part, such questions follow from familiar debates about expert power and resistance. It is a commonplace that the modern western history of sexual and gender nonconformity is one of dialectical tension between being named and naming oneself a history of the political struggle between credentialed experts, offering denitive assessments of the nature of individuals, and those classied as deviant or other, who seek to establish the terms of their own identities and lives (Foucault, 1978; Weeks, 1985; Terry, 1999a). Because doctors and scientists have numbered centrally among those classifying experts, and because of the long history of homophobia in medical research and health care, the relationships of LGBT individuals to 133

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such professionals have been fraught with distrust and misgivings (Bayer, 1981; Esterberg, 1990; Scarce, 1999; Terry, 1999b), and LGBT people often have been unwelcome outsiders to the world of health care and health care research (White and Martnez, 1997; Wolfe, 2000). The political convulsions surrounding the AIDS epidemic changed the dynamics of these relationships in signicant ways, for example by establishing the authority of activists as lay experts qualied to analyze, criticize, and participate in the revision of, medical practices and biomedical research techniques (Epstein, 1996; Treichler, 1999). At the same time, LGBT individuals increasingly have joined the ranks of expertise themselves as doctors, scientists, and health policymakers, among other professions. Now, in the wake of these developments, various actors within LGBT communities in the United States have expanded their critical commentary upon, and demanded new forms of inclusion within, the formal institutions of biomedicine and health. But to what end, and with what conceptions of health and sexuality in mind? These important questions are further complicated by the interlacing of biomedical and bureaucratic authority in late modernity. As biomedical research becomes increasingly politicized, the domain of politics becomes biomedicalized: state health bureaucracies are called on to address political needs and provide medical solutions to political problems; and, thus, increasingly, health care and health research policies help to undergird modes of governance of the social body. In this context, the question of whether and how lesbians, gay men, bisexuals, and transgendered persons should be incorporated within the rubric of biomedical research is, simultaneously, a question about the practices of governmentality (Foucault, 1991) and about the character of both biomedical citizenship (Ong, 1995; Hammonds, 1999; Shah, 2001; and Briggs and MantiniBriggs, 2003) and sexual citizenship (Duggan, 1994; Berlant, 1997; Richardson, 1998; Weeks, 1998; Bell and Binnie, 2000). What sort of subjectivity, and what manner of attachment to the social whole, is presumed and promoted by the kinds of biomedical and bureaucratic practices consistent with a state-centered LGBT health agenda? In addressing these questions, I believe it is important to note the very real, practical benets to LGBT people that may accrue from pursuing this approach to health and health research. More generally, it is also necessary to underscore the potentially emancipatory role of science in advancing the interests of sexual liberation movements (Minton, 2002). At the same time, I would maintain that certain tendencies associated with the statecentered paradigm pose signicant risks for the health and well-being of LGBT communities. Specically (and consistent with some of the recent critiques of the biomedicalization of sexuality offered by Jennifer Terry [1999a, 1999b] and Michael Scarce [1999, 2000]), I suggest that 134

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state-centered LGBT health politics tends toward the reication of sexual identities, the conation of behavior and identity in the determination of health risks, the conceptualization of difference as pathology, the playing down of sexual topics and sidestepping of non-normative sexual practices, and the valorization of professionals and simultaneous inhibition of community participation in research design and interpretation. Avoiding these risks does not necessarily presume abandoning the state-centered approach, but it does require a careful analysis of how these risks become manifest. I will advance this argument in a series of steps.2 First, I will briey provide some necessary background information about the development of lesbian and gay health activism in the United States. Second, I will (very schematically) lay out the recent history of inclusionary debates in federal health and health research policy in the US debates that, in the 1980s and 1990s, centered most explicitly on the inclusion of women, racial and ethnic minorities, children, and the elderly as subjects in biomedical research and new drug development. Third, I will examine the recent history of attempts by LGBT health advocates to institutionalize an attention to LGBT health and health research at the federal level in accordance with the existing policy paradigm. Finally, I will consider the potential consequences for LGBT individuals and communities of alignment with this paradigm, pointing to the kinds of strategic divides that consequently may surface within LGBT health politics.

Movement-building around health in the 1970s1990s: Our bodies, selves, and sexualities3
Historically, as Jennifer Terry (1999a: 7) has observed, perceptions by gay men and lesbians of biomedical institutions and professions have formed in relation to scientic agendas that have been unabashedly interventionist. The question of what is to be done about homosexuality what causes it, what it signies, and how to address it has, until recently, been the guiding concern behind biomedical interest in the topic. In response to the biomedical tendency to construe sexual difference as pathology, patients and activists have found a variety of ways to talk back (Terry, 1999b: 324). Yet surely one of the most profound reactions has been a pervasive distrust of medical expertise and wariness about homophobia in health care settings. Often, many lesbians and gay men either avoided seeing physicians as much as possible or practiced a necessary secrecy and segregation of any sexual or personal issue when dealing with the mainstream health care system (Deyton and Lear, 1988: 15) undoubtedly with negative consequences for their health. 135

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By the late 1950s, criticism of experts negative perceptions of homosexuality began appearing in lesbian and gay activist publications in the US (Esterberg, 1990: 69), and by the early 1970s, lesbian and gay rights groups spoke explicitly about the damaging consequences of medical homophobia for the health of gay men and lesbians. (The medical interests of bisexuals were less often expressed by these activists, and those of transsexuals hardly at all, if ever.) Much of the concern about medical homophobia targeted the psychiatric profession, which classied homosexuality as a mental illness until 1973, when the American Psychiatric Association (APA) under siege from activists disrupting the associations meetings voted to change the classication (Bayer, 1981). But in addition, lesbians who were becoming active in the feminist womens health movement were quick to extend its critiques of medicine and health care to encompass lesbian women. By the time of the second edition of Our Bodies, Ourselves in 1973, this foundational, grassroots womens health compendium contained a chapter entitled In Amerika They Call Us Dykes (Terry, 1999b: 327). Also in the 1970s, gay and lesbian health care professionals began working within professional associations to confront and change homophobic attitudes and promote greater knowledge about the potential health needs of gay and lesbian patients. Health professionals also worked outside of mainstream health care institutions to found community health clinics, such as the Fenway Community Health Center in Boston and the Whitman-Walker Clinic in Washington, DC, that focused specically on serving gay and lesbian patients who felt marginalized elsewhere in the health system (Deyton and Lear, 1988: 17). In the late 1970s the National Gay and Lesbian Health Association, a national organization based in Washington, DC, began organizing an annual meeting of health organizers and service providers.4 Thus, by the end of the decade, the issue of gay and lesbian health had achieved some basic representation within the political and organizational structures of gay and lesbian communities in the US. The emergence of the AIDS epidemic in 1981 dramatically redirected the dynamics and trajectory of lesbian and gay health activism. Early epidemiological investigations into the new epidemic were guided by the presumption that characteristics intrinsic to homosexual life were causing damage to gay mens immune systems, and therefore homosexuality quickly became a renewed object of medical scrutiny. Partially demedicalized in the preceding decade as a result of its removal from the APAs list of mental illnesses, homosexuality now once again was linked to pathology; and the presumed essential link between sexual identity and illness was reected in the rst informal acronym for the epidemic: GRID, or gayrelated immune deciency (Patton, 1985; Altman, 1986). As thousands of previously healthy gay men began ooding doctors ofces and 136

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hospitals, they confronted stigmatization that stemmed as much from homophobia as from fear of HIV transmission. To respond to this health care and political crisis, gay communities created new organizations dedicated to advocacy, service provision, prevention, and education, such as New Yorks Gay Mens Health Crisis and the San Francisco AIDS Foundation. In 1987, in response to the rising tide of illness and death, the slow pace of scientic research and approval of experimental therapies, and the relative indifference of the Reagan administration, radical gay men and lesbians around the country formed branches of a new grassroots activist group, ACT UP (Epstein, 1996, 1998). Though its targets were multiple, ACT UP trained much of its militant direct action against federal biomedical institutions within the DHHS, such as the NIH, the Food and Drug Administration (FDA), and the Centers for Disease Control and Prevention (CDC). As I have chronicled in detail elsewhere (Epstein, 1996), this engagement with institutions of the state was highly consequential for the movement. To achieve their goals, activists increasingly supplemented noisy, disruptive, and mediagenic street activism with intense self-education about virology and immunology; and their arguments about drug research and regulation took on an air of authority stemming from their hard-earned lay expertise. By the early 1990s, a core group of treatment activists had gained a seat at the table, as they described it: they had become accepted participants in discussions with researchers, pharmaceutical companies, and government health authorities about how to orient AIDS research. In ways that would establish precedents for subsequent LGBT state-centered advocacy, these treatment activists had transgressed the boundaries between outsider and insider activism. For gay men in the 1980s and early 1990s, before the advent of highlyactive antiretroviral therapies, HIV/AIDS was, for obvious reasons, simply the health issue that mattered. The position of lesbians in relation to health care activism during this period was considerably more complicated, however. On one hand, lesbians played central roles within AIDS activism, and many of the insights that they brought to the movement from their own involvement in, or knowledge of, the feminist womens health movement were pivotal to AIDS activists denitions of their strategies and goals. Women also established their own caucuses within ACT UP, calling for better research on the development of HIV infection in women and on the risk of infection in lesbian sex. They denounced the tendency for scientists to focus upon women solely as vectors or vessels as transmission routes to men or to babies, or as carriers of precious fetuses that required protection (ACT UP/New York Women and AIDS Book Group, 1990; Schneider and Stoller, 1995). On the other hand, as Sarah Wilcox (2000) has carefully analyzed, 137

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lesbians were often divided about whether AIDS activism was an appropriate focus of their energies, or whether they ought instead to be worrying about issues such as breast cancer (Winnow, 1992). In part this dispute reected varying interpretations of whether or to what degree lesbians themselves were at risk for HIV infection. This was a charged question, not only because authority within ACT UP sometimes accrued to those who were perceived to be at greater personal risk (Terry, 1999b: 333), but also because it cut to the core of intense debates about the boundaries of lesbian community and whether they encompassed, for example, self-identied lesbians who also had sex with men (Wilcox, 2000; Hollibaugh, 1995). Furthermore, lesbian activists disagreed among themselves about the virtues of adopting what had emerged as a dominant model within AIDS activism face-to-face engagement with representatives of the state. While some bitterly complained that privileged, white male treatment activists who had taken a seat at the table had been coopted (Schulman, 1994: 12), others increasingly turned to state agencies themselves to demand that they produce knowledge that would benet lesbians: how many lesbians were infected with HIV? What was the likelihood that HIV would be transmitted in the various sexual activities that women engaged in with other women? As Jennifer Terry (1999b: 334) has observed, beseeching the CDC to study lesbians both implied a sense of faith in traditional scientic expertise that had not been present in the grassroots feminist health care activism of the 1970s and may have privileged a certain kind of hard data over more local and personal channels of information sharing among lesbians. As activist attention increasingly focused on state agencies and big science, a small and pioneering group of academic researchers began seeking to ll in the vacuum of knowledge about lesbian and gay, and particularly lesbian, health concerns (Stevens and Hall, 1991; Stevens, 1992; Mays and Cochran, 1993). Operating on shoestring budgets, researchers set out to survey the state of lesbian health and found that lesbians were underserved . . . and at greater risk than heterosexual women for a variety of health problems (Goldstein, 1997: 97; see also Bowen et al., 1997). The best-known such study, the National Lesbian Health Care Survey conducted by Caitlin Ryan and Judith Bradford in the early 1980s, gathered completed health questionnaires from 1925 women (Ryan and Bradford, 1988). However, as the investigators reported, nothing about this study was easy to accomplish:
Four data keypunch rms were hired and with the exception of the last one, each reneged on their work, eventually refusing to complete the questionnaires and returning them to the Survey Research Lab, unentered. The last company stated that their keypunchers had walked off the job because they were afraid of getting AIDS from handling the questionnaires. (quoted in Goldstein, 1997: 98)

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Despite such difculties, research continued, and a perception of the importance of lesbian health research gradually crept into the awareness of lesbian activists over the course of the 1980s. To be sure, this research was dwarfed by simultaneous, massive investments in the generation of medical knowledge about gay men. Yet while research on gay men focused almost exclusively on HIV/AIDS and was fundable precisely to the extent that was the case, lesbian health researchers, ironically, may have felt freer to use their meager resources to address a broader array of physical and mental health issues. In response to the complex reshaping of gay and lesbian politics that resulted from the AIDS epidemic, and on the basis of evidence generated by academic researchers on lesbian and gay health, activism in the 1990s took increasingly diverse forms. Several examples of LGBT health activism require specic discussion. First, lesbians began pushing the major national lesbian and gay rights organizations, like the National Gay and Lesbian Task Force, to devote resources and energy to health politics. In the early 1990s, NGLTF published two reports devoted to lesbian health issues (Radecic and Plumb, 1993; Denenberg, 1994), one of which, authored by Risa Denenberg, made a range of arguments about the health risks that lesbians might confront. These included: greater risk of breast, endometrial, and ovarian cancer as a result of having fewer pregnancies; and reduced chances of early detection of illnesses because of avoidance of health care institutions perceived to be homophobic (Denenberg, 1994: 7). Second, lesbian activists simultaneously became increasingly involved in the burgeoning breast cancer advocacy movement, which was enjoying remarkable success in increasing the federal funding for breast cancer research. Moreover, breast cancer itself was being framed as a lesbian issue. In 1992, Dr Suzanne Haynes of the National Cancer Institute (one of the institutes that comprise the NIH) caused a stir by suggesting at a conference that lesbians were two to three times more likely than their heterosexual female counterparts to develop breast cancer, based on their prole of risk factors as suggested by studies including having fewer children, drinking more, and being heavier (interview with Haynes, 1992). Reporters and activists who took up a statistic popular at the time that one out of nine women would develop breast cancer in their lifetimes concluded that the lifetime risk for a lesbian was therefore one in three. As breast cancer became dened as a lesbian health emergency, many gay media outlets and advocacy groups found it strategic to balance their coverage of AIDS and breast cancer as a way of giving equal time to what were sometimes conceived of as mens and womens issues (Wilcox, 2000).5 Third, increasing numbers of gay men, lesbians, and bisexuals in the United States became involved in the recovery movement that provided 139

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emotional and practical support and solidarity to individuals concerned with a past history of alcohol and drug abuse. While the recovery movement did not restrict its concerns to the domains of health and medicine, the prominence of this movement helped bring further attention to the broader issue of LGBT health. Fourth, as gay men began to perceive that new antiretroviral drug regimens held out the possibility of an extended lifespan for those who had access to the drugs, this sense of partial progress created the breathing space for some to focus on health issues other than HIV/AIDS. A new, grassroots gay mens health movement took shape in the late 1990s that drew on the lessons of previous gay and AIDS-related activism the importance of defending sexual freedom, the refusal to defer to credentialed expertise but sought a comprehensive approach to the health issues affecting gay men (Scarce, 1999, 2000; Rofes, 1999, 2000; Mayer, 2000). As Eric Rofes, a longtime activist and writer who was a leader of the movement, expressed it:
Contemporary gay men gaze out over the ruins of an AIDS movement struggling to remain alive yet refusing to reinvent itself in the wake of the major medical and cultural changes of the past decade. Beyond AIDS, gay mens health care needs are organized in a panoply of narrow categories mental health, antiviolence, sexually transmitted diseases, substance abuse and are rarely considered collectively from a holistic framework. (Rofes, 1999: xi)

To promote a new vision of gay mens health, Rofes and other organizers convened a Gay Mens Health Summit that brought together more than 300 individuals in Boulder, Colorado in the summer of 1999 to discuss such topics as health promotion in cyberspace, anal sex, anorectal disorders, and STDs, drug use at circuit parties, and domestic violence as a gay mens health issue. By the following year, attendance at the summit was up to 458 participants from 37 states plus Australia, Canada, and Switzerland, and several regional meetings on gay mens health were also held. In 2002, the summit was expanded into a broader LGBTI Health Summit, with the expectation of alternating in future years between a specic focus on gay men and an inclusive focus on lesbians, gay men, bisexuals, transgenders, and intersexuals. As I will suggest, the grassroots character and sex-positive ideology of this new gay mens health movement place it at some critical distance from emergent statecentered advocacy. Fifth, advocates of improved health for transgendered persons began articulating a broad-based agenda for transgender health. Transgenders complained bitterly about the sometimes hateful treatment that they received from health professionals when attempting to access health care services even on routine matters. But increasingly, advocates of transgender 140

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health also pointed to the need for serious research on biological processes related to the life circumstances of transgenders. At what age, for example, would it be appropriate to begin mammography screening for someone who has been on high-dose estrogen and progesterone therapy since their mid20s (White and Townsend, 1998: 3)? In light of the consumption of hormones by transgenders, with what regularity should health care providers order blood work to check blood sugar and cholesterol levels or liver functions (Namaste, 2000: 168)? Over the course of the 1990s, as US lesbian and gay or lesbian, bisexual, and gay groups of all kinds gradually began renaming themselves LGBT to encompass transgenders, the issue of transgender health likewise became increasingly more integrated within an emergent LGBT health activism. Finally, one more thread of activism that requires mention is the attempt to reform medical institutions from within. In the early 1980s a group of California doctors asked the American Medical Association (AMA) if they could establish a gay caucus within the association. When the AMA refused to recognize such a caucus, the doctors formed a separate organization called the American Association of Physicians for Human Rights (Schneider and Levin, 1999). In 1994 the organization renamed itself the Gay and Lesbian Medical Association (GLMA), and two years later the health concerns of bisexual and transgendered patients were formally added to GLMAs charge. Based in San Francisco, GLMA is now a national organization of 2000 medical professionals. As I will describe, it has played a central role in state-centered LGBT health advocacy. Efforts by GLMA have also helped bring about gradual policy changes within the AMA itself. In 1993, after seven failed attempts, the AMA amended its nondiscrimination clause to include reference to sexual orientation (Scheider and Levin, 1999). Two years later the AMA repealed a 1981 policy recommendation that had endorsed attempts to reverse sexual orientation in selected cases. The 1996 report called for the physicians nonjudgmental recognition of sexual orientation and behavior, in order to [enhance] his or her ability to render optimal patient care . . . (AMA, 1996). While observing that generally, men and women who engage in same-sex behavior have the same health afictions as individuals who engage in opposite-sex behavior, the AMA report went on to note that some diseases . . . are of particular concern to men and women who engage in same-sex behavior and therefore are important in a differential diagnosis and treatment plan (AMA, 1996).

Attending to special populations6

My argument is that these impressive and diverse activities in the domain of LGBT health organizing have converged in unforeseen ways with a 141

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somewhat separate history of activism and policymaking. During much the same years that US LGBT health-related activism grew and gained momentum, health policymakers and the leaders of research institutions in the US increasingly confronted diverse complaints from politicians, health activists, and clinicians that biomedical research was systematically inattentive to the problem of difference. In the early 1980s, ofcials within DHHS agencies began responding to concerns that women and racial and ethnic minorities were being underserved by biomedical institutions, and soon thereafter the DHHS commissioned special task forces to investigate these issues and propose new policies. By the late 1980s and early 1990s, the under-representation of women and racial and ethnic minorities as subjects in clinical research had emerged as a recognized public problem (Guseld, 1981) in broader policy circles and in the mass media (Dresser, 1992; Mastroianni et al., 1994; Auerbach and Figert, 1995; Weisman, 1998, 2000). Critics of the status quo a heterogeneous and loose coalition that included politicians, representatives of professional associations, drug companies that stood to gain nancially, sympathetic DHHS insiders, advocates in the mass media, and well-placed women and people of color who had risen to positions of prominence within the worlds of biomedicine and government focused most of their attention on the FDA and the NIH. Since 1977, FDA regulations had routinely excluded women of childbearing potential from many drug trials, whether they were pregnant or not, or had any intention of becoming so, out of concern that an experimental drug might bring harm to a fetus. Many anecdotal reports further suggested that biomedical researchers sometimes considered women to be complicated research subjects because of monthly uctuations in hormone levels that could confound the effects of the medical regimes or therapies under investigation. Mens bodies, by this reasoning, were simpler to study: there were fewer variables to control for (Mastroianni et al., 1994: 80). Implicitly, men were conceived of as prototypical humans; women were perceived as opposite, deviant, or other (Tavris, 1992: 1720; see also Waldby, 1996), and thus as problematic objects of biomedical research. As women scientists at the NIH worked behind the scenes to protest the low prole of womens health issues at that agency, the broad issue of womens health became a galvanizing one for women in Congress (Weisman, 1998, 2000). Language mandating the inclusion of women as subjects in federally-funded biomedical research extended to also include racial and ethnic minorities became part of the NIH Revitalization Act, a bill reauthorizing funding for the NIH that was eventually signed into law by President Clinton in 1993 (NIH Revitalization Act, 1993). That same year the FDA repealed its policy excluding women as subjects; and, 142

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over the course of the 1990s, the agency issued a series of guidelines calling on pharmaceutical companies to provide data on the efcacy of drugs in women, racial and ethnic minorities, children, and the elderly. In 1997 Congress passed legislation offering drug companies a highly lucrative, sixmonth extension on their patents if they went back and studied approved drugs specically in children and submitted that data to the FDA. The following year, the NIH also issued guidelines calling for the inclusion of children in biomedical research. These and other similar new policies emphasizing inclusion of groups and measurement of differences were mirrored by the creation of bureaucratic ofces within the DHHS and its constituent agencies, sometimes by Congressional mandate and sometimes by agency initiative particularly, ofces of womens health and ofces of minority health. With Clintons appointment of an African American physician, David Satcher, as Assistant Secretary of Health and Surgeon General in 1998, the inclusionary approach gained additional strength, because of Satchers personal commitment to the goal of reducing health disparities between racial and ethnic groups. The push toward inclusion of diverse groups was also propelled by the emergence of new sorts of advocacy groups, such as the Washington, DC-based Society for Womens Health Research (SWHR). Emblematic of a new wave of professionalized womens health advocacy, the SWHR has argued that women and men are biologically different at the level of their cells, organs, and systems, and that they must be studied separately and comparatively in biomedical research (http://www.womens-health.org/). But in addition to these actors, some of the social movements discussed previously, such as breast cancer and AIDS activism, also played a causal role. The successes of breast cancer advocacy generated powerful momentum for the new proponents of womens health (Auerbach and Figert, 1995; Weisman, 2000). And AIDS activists were pivotal in arguing that it was grossly unfair to exclude women from experimental drug trials in the context of a health emergency, since clinical trials provided access to otherwise unobtainable and theoretically helpful new therapies (Corea, 1992). Thus while my central point is that LGBT health advocates beneted from the fact that the DHHS had institutionalized a distinctive approach toward inclusion of groups, and sought to follow in the footsteps of the other groups formally accorded recognition, I also want to note the important ways in which they themselves contributed to the very creation of this approach through their participation in specic activist movements. The outcome of these heterogeneous pressures is what political sociologists and political scientists refer to as a policy paradigm. As Peter Hall (1993: 279) has expressed it:

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Policymakers customarily work within a framework of ideas and standards that species not only the goals of policy and the kinds of instruments that can be used to attain them, but also the very nature of the problems they are meant to be addressing. Like a Gestalt, this framework is embedded in the very terminology through which policymakers communicate about their work, and it is inuential precisely because so much of it is taken for granted and unamenable to scrutiny as a whole.

Central to what I will call the inclusion-and-difference policy paradigm is not simply the notion that every group has a right to be attended to by biomedical research, but that there are limits to the generalizability of medical knowledge across group boundaries: researchers cannot assume, a priori, that ndings generated through the study of group x can legitimately be extrapolated to group y or group z. While my description of the paradigm emphasizes federal research policy, it is worth observing that such changes in federal policies have had various ripple effects, or have coincided with simultaneous currents, elsewhere in US society. They have been mirrored, for example, in new attempts by drug companies to establish niche markets in womens health and minority health products; changes in medical curricula to incorporate attention to gender and racial diversity; and the emergence of new research centers and new medical journals specializing in womens health research.

Queering the policy paradigm: From womens health to lesbian health

What were the implications of the establishment of this policy paradigm for the growing LGBT health movement? Throughout the 1980s and much of the 1990s, LGBT communities were not typically considered special populations covered under the rubric of the inclusion-and-difference paradigm. Substantial amounts of NIH funding went to grants that listed homosexuality as a primary or secondary focus. However, as one analysis of funding patterns has revealed, most of these funds (totaling about $20 million a year on average from 1982 to 1992) were directed at the HIV epidemic, with only about $532,000 per year devoted to all other health issues affecting gay men and lesbians (Silvestre, 1999; see also Boehmer, 2002). In the 1990s, however, activists sought to change this. Having learned from AIDS and breast cancer activism that they could successfully transform biomedical research practices through direct engagement with the state, activists proceeded to make the argument to DHHS ofcials that sexual orientation was a distinct form of difference to which researchers and physicians needed to adjust, just like sex and gender, race and ethnicity, and age. Furthermore, and, I believe, crucially, 144

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proponents of lesbian health research were able to benet from positioning themselves as a specic subgroup of women to which the new DHHS infrastructure devoted to womens health ought reasonably to attend that is, womens health provided a strategic wedge for lesbian health advocates. The capacity of lesbians to make use of this wedge was not foreordained; in fact, the 1985 task force report on womens health that had helped to kick off the inclusion-and-difference paradigm had made no explicit mention of lesbians (PHS, 1985). However, many DHHS employees within the newly established ofces promoting womens health were sympathetic to domain expansion. That lesbian health activists appreciated the opening provided to them by the emphasis on womens health at the DHHS is made clear in the National Gay and Lesbian Task Forces 1993 report on lesbian health. Noting that federal health policy documents had called for consideration by DHHS agencies of the unique health conditions affecting women or some subgroups of women, the authors, Peri Jude Radecic and Marj Plumb, argued that lesbians constituted one such distinct subgroup of women. They proposed, therefore, that lesbians be included as subjects, reviewers, and principal researchers in all womens health and mental health research initiatives; that future and ongoing longitudinal health studies funded by NIH be stratied according to sexual orientation; and that the DHHS create a fully funded ofce on Lesbian Health Care (Radecic and Plumb, 1993: 1,12,15). In conjunction with the 1993 march on Washington in support of lesbian and gay rights, NGLTF also organized a meeting between advocates for lesbian, gay, and bisexual health and DHHS Secretary Donna Shalala, who appointed one of her assistants, Patsy Fleming (who became President Clintons AIDS czar the following year) as a lesbian and gay health liaison (Plumb, 1997: 366). At this and subsequent meetings with DHHS ofcials, Dr Vivian Pinn, the director of NIHs Ofce of Research on Womens Health, by all accounts played an especially supportive role, encouraging the notion that lesbian health should be included in the agenda of her ofce (Plumb, 2001: 873; Haynes interview). With doors beginning to open at DHHS, lesbian health researchers and advocates were forced to confront obstacles standing in the way of research conducted specically on lesbian populations. First, many lesbians were leery of biomedicine, distrusted the research enterprise, and were disinclined to volunteer to participate as research subjects. Second, given the difculties in dening lesbian let alone in identifying lesbian populations,7 it was hard to imagine how researchers might construct representative samples (White, 1997, 1998). One practical way around at least the rst of these difculties was to promote the inclusion of demographic questions about sexual orientation within large, representative studies of 145

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groups of women of all sexual identities that were already under way or being planned. Rather than specically recruit lesbians, researchers could mine the data from studies of women, comparing self-identied lesbians and bisexual women with heterosexual women (White, 1997). Even with support from some womens health advocates within the DHHS, adding demographic items on sexual orientation proved politically complicated. Dr Deborah Bowen, a health psychologist, has described the bloody battle to include questions about sexual orientation in the Womens Health Initiative, a massive, NIH-funded clinical study of 167,000 women:
Reactions ran the gamut from Why bother studying lesbians, they are just like heterosexual women? to I wouldnt ask my wife these questions, so Im not going to ask my participants these kinds of questions . . . As it turns out, those questions are not a problem: Almost everybody answers them. (Bowen et al., 1997: 309; see also Solarz, 1999: viii)

Dr Kate OHanlan, the president-elect of GLMA, wrote to DHHS Secretary Shalala, asking her to intercede in the dispute over the Womens Health Initiative, and the National Center for Lesbian Rights organized a letter-writing campaign (Ettelbrick, 1994: 3). Eventually the director of the study backed down and added the sexual orientation question, which means that when the study is complete, researchers will be able to compare self-identied lesbians with heterosexual women with regard to issues such as the effects of diet on heart disease. Similarly, a question about sexual orientation was added to the Nurses Health Study, a large, NIH-funded study of cardiovascular disease in women, after a lobbying campaign in which nurses were encouraged to write to the study investigators and demand such a question (Bowen et al., 1997; interview with Dunn; interview with Haynes). Building gradually over the course of the 1990s, momentum in support of lesbian health research accelerated sharply with the decision by the Institute of Medicine (IOM) of the National Academy of Sciences to prepare a report on the state of lesbian health. The report piggybacked on DHHS interest in womens health in several senses. First, an earlier IOM report on the inclusion of women in biomedical research (Mastroianni et al, 1994) had been pivotal in directing attention to womens health issues, and therefore it seemed logical to advocates of lesbian health to try to replicate that success. Second, funding for the report was provided by Pinns Ofce of Research on Womens Health at the NIH, as well as by the CDCs Ofce of Womens Health directed by Wanda Jones, who would go on to head the DHHS Ofce on Womens Health (Solarz, 1999; Haynes interview). Published in 1999 by the National Academy Press, the book-length report, Lesbian Health: Current Assessment and Directions for the Future 146

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(Solarz, 1999), notably went to some pains to clarify what might be meant by a lesbian health issue. On the basis of the data available, the report concluded, there were no grounds to maintain that lesbians were at higher risk for any health problem than heterosexual women simply because they have a lesbian sexual orientation. It was not that being a lesbian was somehow intrinsically unhealthy; rather, certain specic health risks, such as nulliparity (not giving birth), stress effects of homophobia, and avoidance of health care, apparently were over-represented among lesbian women (Solarz, 1999: 6). Precisely whether these greater risks were resulting in worse health for lesbians was a question that required additional research, and the call for such research was one of the chief thrusts of the report. Advocates for lesbian health research seized upon this conclusion, referring to the reports publication as a landmark day in the history of lesbian health (1st US, 1999), and proposing that researchers take full advantage of the window of opportunity that it had opened up by launching new investigations (Bradford, 1999: 116). Moreover, the achievement of obtaining an IOM report propelled LGBT health advocates to train their gaze even more closely on the DHHS, as I describe in the next section.

Who deserves to be Healthy People?

In 1999 and 2000, a number of developments suggested that LGBTrelated issues were gradually becoming more visible within the DHHS. The Substance Abuse and Mental Health Services Administration compiled a primer on LGBT substance abuse issues and mailed it in January 2001 to nearly 20,000 treatment providers and other constituents (Craft and Mulvey, 2001). The Ofce on Womens Health also published a pamphlet on lesbian health that advertised how lesbian health issues were being addressed at academic centers funded by the ofce as National Centers of Excellence in Womens Health (US DHHS, 2000b). In addition, the Ofce on Womens Health, together with NIHs Ofce of Research on Womens Health, GLMA, and the Lesbian Health Fund, organized a Scientic Workshop on Lesbian Health 2000 to develop specic recommendations following up on the IOM report (US DHHS n.d.). Participants at the workshop drafted a report that in many ways reected the goal of following in the footsteps of other groups incorporated within the inclusion-and-difference paradigm. For example, the Cancer Working Group urged that sexual minority status . . . be incorporated in the list of special populations or medically underserved persons as dened by the Ofce of Special Populations Research at the National Cancer Institute, and further proposed that the NIH Guidelines for Inclusion of Women and 147

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Minorities as Subjects in Clinical Research be amended to include sexual minority status (US DHHS n.d.: 13). Perhaps the dening example of the new state-centered politics, however, was the struggle for inclusion in Healthy People 2010. Running more than 800 pages, this planning document prepared by the DHHS (US DHHS, 2000a) is intended to establish the nations health priorities for the rst decade of the new century. Healthy People has two overarching goals: to increase the quality and length of healthy life, and to eliminate health disparities between groups. More specically, Healthy People consists of 28 focus areas (listed alphabetically from Access to Quality Health Services to Vision and Hearing) which are then subdivided into 467 discrete health objectives. Notwithstanding its dry and bureaucratic tone, this once-a-decade road map to better health is considered enormously important in setting the health agenda both nationally and for state-level and local health departments, and it has substantial implications for funding for research and service provision and for evaluation of health departments efforts. To borrow a term of Bruno Latours, Healthy People 2010 is an obligatory passage point (Latour, 1987) for a large chunk of US public health activity. Initially, LGBT groups were not included in the consortium of advocacy groups convened by the DHHS to participate in the Healthy People 2010 planning process. Nevertheless, early drafts of the document did name sexual orientation up front as one dimension of health disparity. Along with disability, sexual orientation was added to the list of forms of disparity that had been used in Healthy People 2000 ten years before, namely, gender, race and ethnicity, income and education, and geography. As one DHHS employee commented, this sets a nearly irreversible precedent: it is hard to imagine that sexual orientation would get deleted from Healthy People 2020 or Healthy People 2030.8 An early draft of the document also included sexual orientation as a demographic item to be tracked in 20 of the tables corresponding to specic health objectives in the document. However, when the near-nal conference edition of Healthy People 2010 was released in January 2000, these specic mentions of sexual orientation mysteriously had been deleted (LGBT Nixed, 2000: 1), and only a paragraph in the introduction to the draft of Healthy People 2010 about sexual orientation remained: there was then no mention of sexual orientation in relation to any of the 467 health objectives (Roehr, 2000; Smith, 2000a). From a practical standpoint, this absence rendered meaningless the token mention of sexual orientation in the introduction. As GLMA and other groups mobilized, the DHHS received hundreds of letters commenting angrily on this exclusion, and an article appeared in the Washington Blade, a lesbian and gay newsweekly based in the capital, that criticized the Clinton administration for its omission of LGBT people 148

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from the document (Smith, 2000a). After several openly gay employees within Secretary Shalalas ofce became concerned about the issue (interview with Rouse; interview with Dunn), representatives of GLMA, along with university-based lesbian and gay health researchers, were invited into the planning process (Roehr, 2000; Smith, 2000b). Shalala also designated her appointment secretary, Martin Rouse, a gay man who had been distressed to read the Blade article, to serve as liaison to the LGBT community in relation to Healthy People; and Rouse traveled around the country giving presentations to LGBT groups about the Healthy People process. In the end, the nal version of the document incorporated sexual orientation into the data templates for 29 of the 467 objectives. These included, for example, objectives such as: 1. 2. 3. 4. 5. Increase the proportions of persons with health insurance; Increase the proportion of sexually active persons who use condoms; Reduce the annual rate of rape or attempted rape; Reduce the number of suicide attempts by adolescents; and Increase the proportion of adolescents who disapprove of substance abuse.

In addition, words like gay, lesbian, bisexual, men who have sex with men, and particularly sexual orientation appear in the text of the report at a number of places along the way (as revealed by a text search conducted by GLMA). An introductory discussion of health disparities also retained a paragraph specically on lesbian and gay health:
Americas gay and lesbian population comprises a diverse community with disparate health concerns. Major health issues for gay men are HIV/AIDS and other sexually transmitted diseases, substance abuse, depression, and suicide. Gay male adolescents are two to three times more likely than their peers to attempt suicide. Some evidence suggests lesbians have higher rates of smoking, overweight, alcohol abuse, and stress than heterosexual women. The issues surrounding personal, family, and social acceptance of sexual orientation can place a signicant burden on mental health and personal safety. (http:// www.health.gov/healthypeople/Document/html/uih/uih_2.htm)

The inclusion of sexual orientation in 29 of the Healthy People 2010 objectives highlighted an important issue: How would progress in improving the health of gay men and lesbians be tracked in relation to each objective? For tracking purposes, Healthy People 2010 is tied to 26 different federal health surveys, but in the past, few of these surveys have collected data about sexual identity or sexual behavior. In Healthy People, for all 29 data templates that include sexual orientation, the cells in the data tables contain the letters DNC: data not collected. As one activist characterized the situation: Its like somebody inviting you to a wedding but 149

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theres no seat, no table and no food for you (Allen, 2001). In response to this absence, advocates have called for the addition of sexual orientation as a demographic item on national health surveys (Sell and Becker, 2001). For example, at the request of GLMA, the National Center for Health Statistics (part of the CDC) agreed that in 2000 it would add a question about sexual orientation to an important and comprehensive federal health survey of 5000 individuals called the National Health and Nutrition Examination Survey (Brogan, 2001; interview with Dunn). Thus the successful push to include sexual orientation within Healthy People is giving momentum to the project of treating sexual orientation as a standard demographic item in health research. The debate about Healthy People also has led to federal funding in support of efforts to aggregate the current knowledge about LGBT health. DHHS ofcials who had been skeptical of the need to include sexual orientation in the document had pointed to the lack of rm scientic evidence establishing that LGBT people had distinctive health concerns or experienced health disparities relative to others. LGBT health advocates agreed that more research was needed to ll in the gaps in knowledge but also proposed that existing research on LGBT health be summarized in a report. The Health Resources and Services Administration, an agency within the DHHS, responded to lesbian and gay health advocates by putting forward $25,000 in funding for a white paper on LGBT health issues, researched and written by a group of academics and activists. (Charged with providing health resources for medically underserved populations, HRSA has been interested in gay mens health because the agency administers AIDS funding under legislation called the Ryan White Care Act. Perhaps just as importantly in understanding HRSAs willingness to put up the funds, the agencys director at the time was an openly gay man.) The white paper then served as the basis for the creation of a Companion Document on LGBT health, produced collaboratively by a number of organizations but with coordination by GLMA. Intended to supplement Healthy People with a state-of-the-art summary of LGBT health issues, the 481-page Companion Document (GLMA, 2001) has semi-ofcial status: it is one of many such companion documents on a variety of issues that are meant to expand on issues raised in Healthy People 2010. Visitors to the DHHS Healthy People website will nd a link that takes them to the GLMA website, where they can download the document. Proceeding sequentially through the focus areas of Healthy People, the Companion Document offers specic recommendations with regard to service provision, education and training, policy, and research. For example, in relation to research, the document recommends that health care economists measure the economic costs of sexual reassignment 150

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surgery; that population-based studies be conducted to test hypotheses about breast cancer risks among lesbians; and that data be collected on rates of anal neoplasia among men who practice receptive anal sex (GLMA, 2001: 77, 107, 317). Thus the Companion Document proposes a research agenda that goes well beyond the vision of Healthy People. Its recommendations are also more extensive than those found in the IOM report because the latter focused only on lesbians, while the Companion Document also considers gay men, bisexuals, and transgenders. Of course, federal agencies are under no obligation to address the concerns raised in the Companion Document, so it is unclear what impact it will have.

Solidifying the state-centered approach?

Even more so than the IOM report, the debate over Healthy People has inspired LGBT health advocates to enter the arena of federal health policymaking. In the wake of the experience with Healthy People, statecentered advocates have created a new umbrella organization, the National Coalition for LGBT Health. This coalition, which represents more than 40 individual agencies and groups, was established in October 2000 at a meeting in Washington DC. The National Coalition has set a number of goals for itself, including to increase knowledge regarding LGBT populations health status, access to and utilization of health care, and other health-related information, increase LGBT participation in the formation of public and private sector policy regarding health and related issues, and eliminate disparities in health outcomes of LGBT populations (http://www.lgbthealth.net). The group publishes a weekly newsletter that provides updates on research ndings, current events, and ongoing policy debates. In effect, the coalition is positioning itself to be chief voice of state-centered advocacy. At the same time, advocates of LGBT health have sought additional formal mechanisms for institutionalizing their concerns within the DHHS bureaucracy. Most signicantly, in 2000, advocates attempted to convince DHHS ofcials to establish an Ofce of Lesbian and Gay Health that would parallel the Ofce on Womens Health and the Ofce on Minority Health. Painfully aware that if the Republican candidate won the presidential election in November, the prospects for such an ofce would dim considerably and hopeful that, in an election year, the Democratic administration would be anxious to curry favor with LGBT voters advocates pressed hard for the DHHS to take action quickly (interview with Dunn). Responding cautiously, Assistant Secretary of Health David Satcher appointed a Steering Committee on Health Disparities Related to Sexual Orientation. This was headed by Christopher Bates in the Ofce of HIV/AIDS Policy; Adolfo Mata in the Bureau of Primary Health Care 151

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at HRSA; and Suzanne Haynes, who previously had called attention to lesbian breast cancer risk while she was at the National Cancer Institute and who now worked in the DHHS Ofce on Womens Health. Consisting of representatives from each major DHHS agency, the Steering Committee had a six-month mandate to take an inventory of how lesbian and gay issues were treated within DHSS and to draft a strategic plan (interview with Rouse; interview with Bates; interview with Haynes; interview with Dunn). Reportedly, the draft plan makes comprehensive recommendations for each agency with regard to both sexual orientation issues and gender identity issues. (The draft document goes beyond the brief given to the Steering Committee by focusing on bisexuals and transgendered persons as well as lesbians and gay men. However, it invents and employs the acronym SO/GI to refer to sexual orientation and gender identity, on the assumption that an obscure bureaucratic abbreviation will raise fewer red ags than words like transgender.) The draft calls for expanding access to care, improving the quality of care, including sexual orientation and gender identity in surveys and studies, strengthening health promotion efforts, and improving work policies and relations within the DHHS. However, with the change in administration, the formal presentation of the committees strategic plan has been signicantly delayed. In the fall of 2002, in response to pressure from the National Coalition for LGBT Health, 19 members of Congress wrote a letter to DHHS Secretary Tommy Thompson, asking the DHHS to identify the actions that have been taken or will be taken across the department to ensure that health disparities due to sexual orientation and gender identity are being addressed and reduced (Wolfe, 2002). But in fact, the future progress of LGBT state-centered advocacy within the Bush administration is now a good deal less certain. At a National Lesbian Health Conference held in June 2001 and funded by the DHHS Ofce on Womens Health, Barbara Menard, a lobbyist for the Human Rights Campaign (a large lesbian and gay lobbying group) acknowledged that advocacy was going to be more difcult vis--vis the Bush administration, but noted that Bush has retained the various ofces of womens health as well as the Ofce of AIDS Policy and concluded: Theres a momentum thats not going to be stopped . . . Were on an incredible roll.9 By October 2002, however, after DHHS withdrew $75,000 in funding previously earmarked for a lesbian health conference, researcher Judy Bradford was complaining that LGBT health concerns were moving off the radar screen at DHHS (Wolfe, 2002). Politically-motivated crackdowns on federally-funded AIDS education efforts also struck a worrisome note. In 2001 the CDC reported that it was investigating a community-based AIDS prevention 152

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organization in San Francisco (the STOP AIDS Project) that appeared to be violating federal law by using federal HIV prevention funds in ways that encourage sexual activity (Heredia, 2001). In other ways, however, the incorporation of LGBT concerns within the inclusion-and-difference paradigm has continued within DHHS. In May 2001, the NIH issued a program announcement entitled Behavioral, Social, Mental Health, and Substance Abuse Research with Diverse Populations (NIH, 2001). Sponsored by a series of DHHS agencies, the program announcement invites principal investigators to apply for up to ve years of grant support, for amounts of up to $250,000 per year in direct costs, for research on lesbian, gay, bisexual, transgendered, and related populations. The text of this call for proposals is careful to avoid stigmatization of LGBT people while providing a rationale for studying them:
Current scientic evidence clearly indicates that the majority of LGBT people do not suffer from clinical disorders. However, recent data from both national health surveys and targeted studies suggest that prevalence rates of affective disorders, tobacco addiction, alcohol abuse, certain forms of drug abuse, and possibly other dysfunctions are higher for LGBT populations (or particular segments of those populations) than for the general population. (NIH, 2001)

The program announcement developed out of a workshop that took place prior to the change in administration, and the fact that words like gay and lesbian do not actually appear in the title are indicative of caution in a changed political environment. While skillful career civil service employees enjoy a certain room to maneuver in promoting policies that they favor, it remains unclear just how many such victories LGBT health advocates will achieve during the Bush administration. And to the degree that the success of state-centered advocacy has depended on the accidental presence of LGBT persons employed within the belly of the beast who have been willing to take stands on LGBT health issues, then it remains to be seen whether such employees will continue to feel emboldened to speak up.10 Clearly, extension of the inclusion-and-difference paradigm to encompass LGBT health and health research concerns has been only partial, as compared to other groups that have been more fully encompassed within its framework. In considering the new ways in which LGBT health is being understood, however, it is important not to restrict attention solely to the state, narrowly dened. A range of developments outside the arena of federal policy suggest the augmented prole of LGBT health within mainstream professional and policy circles. Just as renewed concern with womens health on the part of the DHHS was accompanied by the establishment of new professional journals, new medical curricula, new research centers, and new drug marketing strategies, similarly the interest in LGBT 153

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health is bubbling up in all sorts of places. For example, the American Journal of Public Health, the ofcial publication of the American Public Health Association, published a special issue on LGBT health in June 2001 (see Meyer, 2001). Devoting 136 pages of the journal to LGBT health topics, the issue included articles on topics such as Same-Sex Romantic Attraction and Experiences of Violence in Adolescence; The Impact of Homophobia, Poverty, and Racism on the Mental Health of Gay and Bisexual Latino Men: Findings From 3 US Cities and Papanicolaou Test Screening and Prevalence of Genital Human Papillomavirus Among Women Who Have Sex With Women. Noting that LGBT health is clearly an issue whose time has come, the editor-in-chief of the journal reported receiving more than 100 submissions for this issue. While a handful of authors asked that their work be moved to a different issue of the journal, for every detractor, we counted at least a dozen enthusiastic supporters (Northridge, 2001: 856).11 The recent prominence of LGBT health issues is likewise suggested by developments such as: 1. GLMAs creation of its own research journal, the Journal of the Gay and Lesbian Medical Association; 2. a special feature on lesbian and gay health in msJAMA, the online journal for medical students published by the American Medical Association, in their October 6, 1999 edition; 3. the formal admission of GLMA into an AMA section for specialty societies in 2001; 4. the emergence of what was dubbed a lesbian health research infrastructure (Bradford, 1999) that included lesbian research centers at Columbia University and the University of California, San Francisco; 5. the creation of gay health websites such as gayhealth.com (The Doctors Are OUT!); 6. the increasing interest of pharmaceutical companies in niche marketing to gay men and not just for HIV drugs, as gay-themed ads for drugs such as the hair-restoration drug Propecia make evident. (He likes me just the way I am, read the caption for an ad that appeared in the gay press in 2000, showing a happy male couple: Keeping my hair is my choice.) Interest in LGBT health concerns is also evident at the level of local government, as a growing number of city health departments, including Chicago and Boston, establish ofces of lesbian and gay health.12 Thus a complete characterization of the new wave of LGBT health-related advocacy would need to consider not simply the formal terrain of the DHHS but also the extensive web of professional and commercial activity with which state action intersects. 154

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Implications
The partial and limited institutionalization of LGBT health concerns within the programs, policies, interests, and rhetoric of the DHHS would have been hard to foresee until recently. These developments are impressive and should not be underestimated. However, even if LGBT people do become more explicitly integrated according to the logic of the inclusion-and-difference paradigm (despite resistance from a conservative administration), it is important to examine just what such success might entail. Moreover, because state-centered advocacy inevitably places certain kinds of issues in the foreground and sidesteps others, it makes sense to analyze the explicit and implicit tensions between state-centered LGBT health advocacy and other forms of health activism of a more grassroots character. I approach these questions by suggesting some of the potential consequences of adopting a state-centered, inclusionary approach. I do so in a necessarily speculative fashion, with the goal not of making rm predictions or asserting a hard-line view, but, rather, of sounding a series of cautionary notes. State focus As activism is aligned to the inclusion-and-difference paradigm, the state increasingly may become the focus of political energies, and state actors and institutions may become perceived as the ultimate guarantors of equal treatment in the domain of health. Such moves may ignore what Wendy Brown has described as the dangers in surrendering control . . . to the state, as well as in looking to the state as provider, equalizer, protector, or liberator (Brown, 1995: 196). In this environment, advocacy organizations like GLMA, which emphasize Washington, DC-based lobbying as a primary tactic and which possess a close familiarity with state institutions, rise to prominence. (In 2001 GLMA opened a Washington-based ofce under the direction of Martin Rouse, who had resigned from the DHHS with the change in administration [Gay Docs, 2001].) Groups with a more critical approach to the state, such as those represented by the recent Gay Mens Health Summits, then nd themselves walking a careful line, seeking to avoid both marginalization and co-optation. Thus, for example, the 2001 Gay Mens Health Summit included a plenary session on Healthy People 2010, featuring presentations by Martin Rouse and other DHHS employees, but, in the discussion that followed, both attendees and organizers voiced skepticism of relying on the government and on experts (authors eld notes). Professionalization Adopting a state-centered approach also increases the groups dependence on professionals, including credentialed researchers, policymakers, and professional lobbyists, who may not always dene the 155

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best interests of all sectors of the community in the same ways as other political actors (Mayer, 2000). Be careful what you ask for, Vickie Mays, a UCLA health researcher, warned the audience at the Gay Mens Health Summit in 2001. Mays pointed to the growing number of researchers studying racial and ethnic minorities without any genuine knowledge of or commitment to those communities: This does not need to be repeated in the gay mens health movement (authors eld notes). It also seems unlikely that academic health researchers will be as prone to value the kinds of experiential, community-based knowledge about health, illness, and sexuality that are cultivated in grassroots activists circles. As Marj Plumb warned in the special issue of the American Journal of Public Health:
What is knowable about a population and its health conditions cannot be found solely through quantitative science. Community knowledge, particularly in the case of populations that are difcult to nd or to categorize, plays an increasingly important role in attempts to study these populations. (Plumb, 2001: 874)

In the context of state-centered politics, advocacy groups such as GLMA that consist of a professional membership tend naturally to move to center stage. The professional orientation of such groups then attracts criticism from grassroots activists: when GLMA was mentioned at the Gay Mens Health Summit, audience members blasted the organization as white, professionalized, and insufciently accountable to the community (authors eld notes). While GLMAs policy director, Pat Dunn, has a background in immigration law and a past history of work with a range of community-based organizations in San Francisco, GLMA as a whole reects the politics of its constituency of medical doctors. Recognizing the need for more broad-based participation in LGBT health advocacy, Dunn played an active role in helping to build the new National Coalition for LGBT Health. But it remains to be seen how democratically accountable this coalition will be, and what role groups such as GLMA will play within it. Visions of health Radical health activists frequently have challenged the mainstream biomedical presumption that the goal of health can be equated simply with the elimination of disease. For example, in his remarks at the opening session of the Gay Mens Health Summit in 2000, Eric Rofes addressed the issue of what constitutes a healthy gay man, suggesting that health meant more than just the absence of disease, and criticizing the association of health with normative cultural behavior. State-centered efforts, by contrast, tend to adopt the DHHS goal of reducing disparities in disease rates between groups a worthy goal, to be sure, but one that can bypass more fundamental questions about the meaning of health to a community. 156

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From health care to health research framing and collective identity As adoption of the inclusion-and-difference paradigm directs attention to the state and its denitions of health, the political agenda of challenging groups tends at least partially to shift away from focusing on health care provision and toward focusing on health research. If, in the past, the quintessential criticism concerned the insensitivity or hostility of health care providers and the consequent limits on access to care, the new hot issue becomes the problem of unjustied extrapolation in research that is, the tendency of researchers and physicians to assume that ndings from data collected through studies of straight white male adults can be extrapolated to other groups. Advocacy groups that have argued that differences matter have confronted a chicken-and-egg challenge: on what basis can they legitimately demand increased research on their group, in the absence of data that policymakers claim is needed in order to justify this special consideration (see Bowen et al., 1997: 3056)? How, for example, does one back up the claim that gay mens health risks must be studied, in the absence of methodologically rigorous prior research that suggests that their risk is indeed greater? Eventually, advocates have to persuade policymakers that the only way to generate the data that would justify more research is to begin by doing some research. This strategic shift from the conduct of health care provision to the conduct of health care research has important implications for how health issues are framed by LGBT movements. On one hand, the domain of research is less accessible and more intimidating to laypeople, and it can be harder for non-experts to nd a voice in such arenas. Drawing people into social movements concerning with technical issues and mobilizing them in relation to abstruse goals can be a challenging task (Epstein, 1996). On the other hand, the focus on research may present activists with a relatively more achievable set of goals. After all, compared with including LGBT people in biomedical research, it would be much more challenging to imagine eliminating the homophobia of the health care delivery system, which is so much more decentralized and involves so many more individuals. In addition to altering how issues are framed, the emphasis on questions of research has implications for the collective identity of a social movement, for it can change the denition of what unites the group. When a group challenges their stigmatizing treatment at the hands of health care providers, then what unites them is the common experience of discrimination and oppression. But when the focus shifts to ensuring that a categorical identity is tabulated on surveys and in clinical studies, then the basis of group identity changes to one of epidemiological similarity sharing the same disease risks or health disparities vis--vis the mainstream. In the former case, the group faces common external conditions but need 157

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not be internally similar: we are the same only insofar as we are treated the same by others. In the latter case, the group lays claim to internal similarity as well: what unites us is that we share a distinct and speciable health prole. These are two quite different ways of conceiving of collective identity, and they may promote different kinds of analysis and political action.13 For example, insofar as the group sees itself as having a distinct health prole, then group members may overemphasize the threat posed by those conditions that are seen as group specic, while failing to attend to health risks (such as cardiovascular disease) that may be substantially larger for many individuals in the group but that are not restricted to the group. In addition, group members may assume that what the group has in common (a sexual identity) is necessarily more consequential for the health of group members than the ways in which they differ (by social class, race, ethnicity, nationality, region, religion, and so on). Indeed, insofar as the group is conceived of as internally similar, then the interests of subgroups, such as gay men of color, or working-class lesbians, may be systematically ignored.14 To be sure, the notion that LGBT communities are internally diverse is voiced repeatedly in documents such as Healthy People 2010 and the Institute of Medicine report, and commentators have warned about the risk of the elision of important differences among populations and individuals (Meyer, 2001: 858). Nevertheless, the emphasis on, for example, gay men as a categorical identity may inevitably tend to privilege (in the domain of health just as elsewhere in gay politics) the particular interests of middle-class gay white men. Operationalizing the categories identities and practices With the emphasis on special populations, representatives of groups come to recognize that for a group to count in the polity then it must properly be counted (measured, included in surveys, and so on). With this realization comes the practical problem of how to transform social identities into categorical identities that can be operationalized and measured. Inevitably, researchers and advocates must then devote considerable attention to questions of denition and measurement (Solarz, 1999; Sell and Bradford, 2000) for example, the index to the Institute of Medicine report lists 15 different page references for denition of a lesbian. A possible consequence is that the research agenda becomes dened around precisely those questions that are amenable to quantication and measurement, which may or may not be perceived by members of the community as the questions that most crucially require answers. And a possible effect is not only to privilege quantitative over qualitative data, but more generally to enhance the authority of academic researchers and the kinds of knowledge that they produce, at the expense of the local and sometimes anecdotal 158

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knowledge about health and illness that is generated at the community level (Escofer, 1999). To be sure, the absence of a prior history of the institutionalization of sexual orientation categories within the federal bureaucracy means that LGBT demands for inclusion are a bit trickier than those of other groups. By contrast, when racial and ethnic minorities pressed for inclusion as subjects in biomedical research in the 1990s, the fact that race and ethnicity categories were already in long use on the US census and on health surveys (however much the ofcial list of these categories may shift every decade or so!) meant that it was easier to operationalize inclusion of these groups. Government ofcials are far less used to thinking about categories of sexual orientation and categories such as transgender are considered simply too out there by federal ofcials (interview with Dunn), who are hardly prepared at present to replace the standard male/female demographic item with one that includes a third option (interview with Haynes). Indeed, it is not at all clear that state-centered advocacy will promote genuine inclusion of transgender health issues, or whether it will instead emphasize the variable of sexual orientation. By comparison with transgender, sexual orientation categories such as homosexual (and heterosexual) might seem to lend themselves to straightforward operationalization. (And perhaps bisexual does as well, though some view this as a suspect category because of its apparent in between status.) But these categories also pose difculties for a different reason: the lack of clear correspondence between identity and behavior. Surveys that ask respondents to name their sexual orientation will produce one set of mappings of individuals onto categories. Surveys that ask respondents who they have sex with will produce a different set of mappings, and questions about the object of desire will produce a third. As we know from empirical research (Laumann et al., 1994), these mappings will overlap but will not coincide. This disjuncture between identity, practice, and desire necessarily complicates the operationalization of sexual orientation. Although advocates of lesbian and gay health research are sensitive to these denitional difculties, they tend not to emphasize the disjuncture between identity, practice, and desire because it brings scrutiny that may be unwelcome to a crucial underlying question in the politics of lesbian and gay health research: What really counts as a gay or lesbian health issue? While some risks, such as higher rates of teen suicide, do indeed accrue to gays and lesbians as a consequence of their social identity, many other gay and lesbian health risks have nothing immediately to do with identity but, instead, reect the propensity of gay men and lesbians to engage at higher rates in specic behaviors. If it does turn out that lesbians, as a group, are at greater risk of breast cancer, then this may have little to do with their 159

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social identity as lesbians except insofar as lesbians bypass mammography screening to avoid homophobic treatment by medical professionals but instead may perhaps be due to the fact that lesbians are more likely not to have children. If gay men, overall, are at greater risk of anal cancer, then this may be a consequence of engaging in the practice of anal sex an activity that is neither universal among gay men nor restricted to them. The problem with calling these diseases gay and lesbian health risks is that (1) it incorrectly suggests that all members of the group are equally at risk, ignoring, for example, that many lesbians do bear children; and (2) it ignores those individuals who engage in the same practices but who do not accept the group identity, such as heterosexual women who are childless, or men who have sex with men but who do not call themselves gay. Arguably, if risk is linked to practices, then health promotion and health research ought to address those practices; but because the inclusionand-difference paradigm presumes political organizing around social categories, claims about risk are more likely to be framed in terms of categorical identities. Indeed, whereas AIDS activists in the 1980s demanded that behavior and identity be disentangled, declaring that its what you do and not who you are that puts the individual at risk for HIV infection, state-centered lesbian and gay health activists in the 1990s and beyond appear relatively unconcerned when behavior and identity are conated. It might instead be more helpful to insist that the only health issues that are specic to LGBT people as lesbians, gay men, bisexuals, or transgenders are those that stem from the oppression directed at them as such. As Jennifer Terry has speculated in the case of lesbian health: Perhaps a specically lesbian agenda for health would disappear if equity and respect were extended to all women, regardless of their class, color, or sexual practices (Terry, 1999b: 338). Reication and medicalization The likely consequence of the association of health risk with identity categories (rather than with shared practices or shared oppression) is the reication and medicalization of those identities. This might not be so worrisome were it not for the long history, within medicine, of conceptualizing difference as pathology (Gilman, 1985; Proctor, 1988; Jordanova, 1989; Terry and Urla, 1995; Waldby, 1996; Terry, 1999a, 1999b; Scarce, 1999, 2000). Especially given the urge in many quarters to conceptualize sexual identities as biological essences and to attribute such essences to gay genes or gay brains, such reication may tend toward a presumption that LGBT individuals are actually biologically distinct from other humans. (Many advocates of lesbian and gay rights endorse such moves, on the belief that if sexual orientation is seen as an immutable characteristic, then conservatives cannot 160

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successfully characterize it as a sinful choice, see Epstein, 1998.) To be sure, some state-centered researchers appear to be skeptical of the notion that sexual orientation is a biological classication (Sell and Becker, 2001: 878); and many discussions of LGBT health research emphasize mental health and substance abuse issues that do not necessarily lend themselves to a biological framing, especially when linked to claims about the social oppression to which LGBT people are subjected. Often, however, the reication of identity tends to support the idea that certain groups either are susceptible to illness as a result of their biological differences, or are prone to illness as a result of bad habits and customs that are intrinsic to the group.15 Politics of sexuality There may be another reason why advocates of statecentered health tend to emphasize identity rather than behavior: While an emphasis on behaviors might often be a more precise way of talking about health risk in the case of lesbian, gay, and bisexual health, speaking of identity tends to keep the focus on personhood, while emphasizing behavior inevitably would mean talking explicitly about sexuality. It can be argued, in fact, that the political viability of state-centered LGBT health politics has depended substantially on the avoidance of explicit discussion of sexuality. In the corridors of Washington, it is far less threatening to speak of sexual orientation as a demographic variable than it is to speak of fellatio or sting. In recent decades, Republicans in Congress have torpedoed the funding even for survey research related to sexuality, such as the National Health and Social Life Survey (Laumann et al., 1994), and federal agencies have shown a distinct lack of interest in health research that seems too gay, such as research on anal condoms or rectal microbicides. Indeed, the explanation of why lesbian health research seemed to take off ahead of (non-HIV-related) gay mens health research may be, in part, that in the popular imagination, gay men are more sexualized than lesbians. As Pat Dunn, the policy director for GLMA, observed: I have heard political analysis that lesbians are easier to talk about: its not as politically or socially unacceptable to talk about lesbian health issues, [while the perception is that] gay mens health issues have a lot to do with anal intercourse and that kind of thing (interview with Dunn). While state-centered LGBT health advocates and researchers may themselves be quite open-minded on sexual matters, the inevitable need to play down issues of sexuality in order to pursue their agenda may place them at odds with signicant strands of the LGBT movement, which historically has defended a liberated sexuality. Indeed, the new, grassroots gay mens health movement (like the AIDS activist movement before it) has adopted a strong sex-positive stance that is reected in the blunt and unapologetic language used at their conferences and in their printed materials. 161

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(The cover of the conference program for the 2000 Gay Mens Health Summit displays a collage of session titles, including The Dick A Users Guide and Perceptions of Semen.) Eric Rofes noted that it would have been possible to obtain some public funding for the summit in 2000, based on the success of the previous years event, but organizers had worried about the consequences of accepting funds:
The rst year we had a workshop called Being Fucked which turned out to be one of the most popular and highly recommended ones, and when we got approached by different sponsors . . . thats how we always thought about it: could we do a workshop called Being Fucked with these people there? (interview with Rofes)

To avoid censorship, the organizers decided not to accept the funds that had been offered. They also agreed to issue an invitation to the Surgeon General, David Satcher, to speak at the 2000 summit, but with the understanding (communicated to his staff) that the event would be just as explicit in addressing sexual matters even if Satcher were present. The Surgeon General declined the invitation. The historical linkage of LGBT politics with a sex-positive stance may give the LGBT health agenda a specic kind of critical edge that distinguishes it from that of other social groups that have been folded within the inclusion-and-difference paradigm. The inability of agencies of the state to incorporate this sexual politics may lead to a clearer articulation of an alternative, non-state-centered, LGBT health politics. For example, at a panel discussing Healthy People at the 2000 Gay Mens Health Summit, Daniel Wolfe, a New York City-based activist and writer who had worked on the white paper but had been skeptical of many aspects of the process, asked rhetorically: When will we see research on how prostate cancer treatments diminish pleasure during anal sex? Never, from Healthy People 2010! (authors eld notes). Such questioning, and the implicit call for a broader agenda for research, prevention, and treatment, potentially puts grassroots activists on a collision course with the requirements of statecentered advocacy.

Conclusion
I have argued for a more complicated understanding of the trajectory of the US LGBT health movement and the various inuences upon its development. Histories of that movement have correctly traced its roots back to the feminist womens health movement of the 1970s, the gay STD clinics of the 1970s, AIDS and breast cancer activism, and other inuences. However, this familiar lineage is now interweaving with another one the history of identity-based groups presenting inclusionary claims to the 162

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federal health bureaucracy. Out of the intersection of LGBT health activism and the politics of the inclusion-and-difference paradigm, new forms of state-centered advocacy are emerging. As recent writing by Jennifer Terry (1999b) and Michael Scarce (2000) in different ways suggests, the rise of a state-centered health agenda poses important strategic choices for LGBT communities. The partial institutionalization of LGBT health concerns within the federal health bureaucracy may result in substantial amounts of funding for research on health issues that affect lesbian and gay (and perhaps, to a lesser degree, bisexual and transgendered) people. Researchers committed to improving the health of those communities may in practice nd few constraints on their use of government funds and may be able to take the money and run or they may nd that funding is available only to the degree that research conforms to government prescriptions about health, sexuality, and identity. As Ilan Meyer, the guest editor of the special issue of the American Journal of Public Health, warned, we may see that for every sensitive effort to include the target population in decision making, there may be another program that seeks to restore health by eliminating practices essential to self-expression and identity, leading to alienation and damage (Meyer, 2001: 858). How can the risks of co-optation by state bureaucracies best be avoided? What does it mean for LGBT people to become subjects and objects of biomedical scrutiny in these new ways, and to themselves adopt biomedical modes of understanding of their identities and communities? Is the focusing of medical attention on sex/gender subjectivities a good thing, in the sense that it attracts people and resources to the study of previously underserved communities? Or is it a dangerous thing, in the sense that it encourages us to treat sexual and gender identities as xed biological or cultural types and as a kind of illness category? Engagement with the state and with biomedical expertise and modes of understanding appears inevitable and probably crucial but the risks that accompany this engagement are also not insignicant. In the present era, as more and more social groups demand inclusion in biomedical research, calls for such incorporation are, in effect, calls to be treated as citizens. Historically, however, biomedical citizenship (Ong, 1995; Hammonds, 1999; Shah, 2001; and Briggs and Mantini-Briggs, 2003) has been closely linked to the policing of social groups and the demarcation of the boundaries of normality.16 Analyses of sexual citizenship and its limitations (Duggan, 1994; Berlant, 1997; Richardson, 1998; Weeks, 1998; Bell and Binnie, 2000) may prove instructive here: As Diane Richardson has observed, the extension of citizenship on the basis of sexual identity has encountered stiff resistance and has been based on a politics of tolerance and assimilation (Richardson, 1998: 89). There is no reason to assume 163

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that biomedical citizenship for LGBT people will be any less begrudgingly bestowed or any less riddled with contradictions than citizenship for such people generally.

Acknowledgements
I am grateful to Charles Briggs, Hctor Carrillo, Josh Dunsby, Richard Elovich, Kristin Esterberg, Val Jenness, Natalia Molina, Jennifer Reardon, Chandan Reddy, Nayan Shah, John Skrentny, Sarah Wilcox, Daniel Wolfe, and three anonymous reviewers for helpful comments on a previous draft of this article. Portions of this work were completed under the auspices of a residential fellowship at the University of California Humanities Research Institute, and I also would like to thank my colleagues who were part of the residential group for their comments on an early draft. The work on which this article was based was supported by an Investigator Award in Health Policy Research from the Robert Wood Johnson Foundation. In addition, this material is based upon work supported by the National Science Foundation under Grant No. SRB-9710423. Any opinions, ndings, and conclusions or recommendations expressed in this material are those of the author and do not necessarily reect the views of the National Science Foundation. Additional research funding was provided by the University of California, San Diego.

Notes
1. Concerns of bisexuals and transgendered persons, as well as intersexuals, increasingly have been addressed explicitly under the state-centered political rubric that I describe in these pages, but in many cases they have not been. Throughout this article, my use of identifying terms is deliberate and is intended to reect the categories of analysis employed by the social actors in question. 2. Data for the larger study to which this article belongs have been obtained from 72 semi-structured, in-person interviews in and around Boston, New Haven, New York, Baltimore, Washington, Atlanta, Ann Arbor, Chicago, Denver, Boulder, San Francisco, Los Angeles, and San Diego. Those interviewed included past or present NIH, FDA, and DHHS ofcials; clinical researchers; pharmacology researchers; biostatisticians; medical journal editors; drug company scientists; health advocates and activists; bioethicists; members of Congress; Congressional aides; lawyers; representatives of pharmaceutical company trade associations; experts in public health; and social scientists. Additional primary data sources include documents and reports from the NIH, the FDA, the CDC, the DHHS, and the US Congress; archival materials from health advocacy organizations; materials from pharmaceutical companies and their trade organizations; articles, letters, editorials, and news reports published in medical, scientic, and public health journals; and articles, editorials, letters, and reports appearing in the mass media. 3. Intended simply as a backdrop to the original research that follows, the capsule history in this section can only gesture at a much larger story.

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4.

5.

6. 7. 8. 9. 10. 11.

12. 13.

14.

15. 16.

(Indeed, as Eric Rofes has emphasized in relation to his recent historical research on political organizing to confront re safety hazards in gay bathhouses in the 1970s, much of the history of gay and lesbian healthrelated activism before AIDS remains unwritten.) However, the references in this section indicate the key sources on which I have relied and to which the reader can turn for more information. The National Gay and Lesbian Health Association continued to hold its annual meetings until 1997, when it was forced to close as a result of nancial problems. Claims of a causal link between nulliparity (not having children) and breast cancer risk have been controversial, and some have described such research as pro-natalist. My purpose here is not to take these research claims at face value but to examine their use within political argumentation. I develop the history of the inclusion-and-difference paradigm in much greater detail in Epstein, 2002 and in a future book project. I return to this point later in the article. Martin Rouse made this observation at the Gay Mens Health Summit in Boulder, Colorado, 1923 July 2000 (authors eld notes). National Lesbian Health Conference, University of California-San Francisco, 22 June 2001 (authors eld notes). In 2001 the openly-gay director of HRSA resigned some say, was forced out. More recently, an article in the AJPH documenting the underrepresentation of LGBT persons as explicit research subjects has called for an expansion of the NIH Revitalization Act to [require] the inclusion or at least a justication of the exclusion of sexual orientation and transgender identity (Boehmer, 2002: 1129). Some cities, such as New York and San Francisco, have had such ofces for some time. I am grateful to Sarah Wilcox for suggesting these points. As Wilcox has argued in her analysis of lesbian health politics, strategic debates about the health politics of groups are inevitably debates about the very identities of those groups (Wilcox, 2000). Class distinctions may be particularly likely to escape notice, given that social class is poorly integrated into the framework of difference established by the inclusion-and-difference paradigm in the US. For parallel historical cases, see Ong, 1995; Hammonds, 1999; Shah, 2001; and Briggs and Mantini-Briggs, 2003. On the relation between citizenship and governmentality, see also Cruikshank, 1999.

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Cited interviews
Bates, Christopher (2000) Ofce of HIV/AIDS Policy, Department of Health and Human Services. Interviewed in Washington DC, 7 August. Dunn, Pat (2000) Director of Public Policy for the Gay and Lesbian Medical Association. Interviewed in San Francisco, 28 July. Haynes, Suzanne (2000) Ofce of Womens Health, Department of Health and Human Services. Interviewed in Washington DC, 7 August. Rofes, Eric (2000) Activist; Assistant Professor, Department of Education, Humboldt State University. Interviewed in Washington DC, 11 August. Rouse, Martin (2000) Former scheduling assistant in Department of Health and Human Services. Interviewed in Boulder CO, 21 July.

Biographical Note
Steven Epstein is Associate Professor of Sociology at the University of California, San Diego, and he is also afliated with UCSDs interdisciplinary Science Studies Program. He is the author of Impure Science: AIDS, Activism, and the Politics of Knowledge (University of California Press, 1996). His current research focuses on the politics of inclusion and the management of difference in US biomedical research. He teaches courses on science, medicine, sexuality, LGBT studies, social movements, and social theory. Address: Department of Sociology, University of California, San Diego, 9500 Gilman Drive, La Jolla, CA 920930533, USA. [email: sepstein@ucsd.edu]

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