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1 Samantha D. Gottlieb Department of Anthropology California State University The Patient Consumer Advocate Nexus The Marketing and Dissemination of Gardasil, th e Human Papillomavirus Vaccine, in the United States ______________________________________________________________________________ The 2006 availability of Merck's human papillomavirus (HPV) vaccine, Gardasil, in the United States provides an opportunity to examine the pharmaceutical company's creation of patient awareness for one of the most common sexually transmitted infections and its related cancer. In spite of the ubiquity of gynecological screening, prior to the vaccine's dissemination, most U.S. women were not familiar with either the infection or its association with cancer. Merck's role in e ncouraging a patient advocacy commu nity mimics existing breast cancer patient advocacy culture in the United S tates while also demonstrating marked popular culture differences between the two women's health concerns and their respective advocacy groups. T h is article draws on ethnographic fieldwork with an HPV/cervical cancer advocacy organization to demonstrate how the group and its members engaged in an activism of awareness that disavows larger political aims. [ HPV vaccine patient advocacy pharmaceutical marketing women's health cancer ] ______________________________________________________________________________ Introduction In the fall of 2007, 15 months after the U.S. Food and Drug Administration (FDA) approved the human papillomavirus (HPV) vaccine, Gardasil, a small cervical cancer/HPV advocacy organiza tion, the Cervical Cancer Group (CCG), held its first conference in a major east coast city. Women made the trip from all over the country. One of the founders, Gary, 1 opened the conference enthusiastically, "Today is the day you've asked for, and what you 've asked for is information." He repeatedly stressed the almost exclusively female audience's ownership of the conference and their entitlement to information, emphasizing the need to de stigmatize cervical cancer (CC). Renaming cervical cancer "cervix ca ncer" and invoking war metaphors, he argued cancer research required a broad attack and that cancer eradication efforts "need[ed] to have a prevention arm [and] the detection arm. And we have that [Pap smears] with cervix cancer. It's not a hundred percent ; we know it's not a hundred percent, but since the 1960s rates of cervix cancer have gone down." In spite of progress, he reminded the audience that the research efforts still had far to go. Alluding to the last 18 months of public debate about the availa bility of Gardasil and whether it should be required for girls starting at age 11, he set the tone of the conference: You're here, you're an example that it's [cancer reduction] not good enough. Imagine being able to stop the cancer before it starts ... W e have a situation [ Gardasil ] where we can make that the case. We can stop the cancer before it occurs. There seems to be politics associated with that. I don't want to get into politics on any of that but we can stop the cancer, and that's everything.
2 Gary tried to preempt discussion of proposed HPV vaccine school requirements that were widely discussed that year H e didn t need to, as many of the attendees were avid supporters, although almost none were eligible for the vaccine, approved for girls/wome n 9 26 years old. Gary directed the CCG to participate in a specific form of advocacy around CC and Gardasil, an "everyday" activism (Selleck 2010:123) of awareness, rather than a politically motivated activism. "Early detection saves lives. Early detectio n saves lives," he intoned. For him it was consciousness raising "advocacy work [that] matters." He beseeched everyone to "Communicate the message and get it out there" and incited the group to yell out, "Cancer Sucks!" When the crowd's response was not s ufficiently enthusiastic, he made the women repeat it with more gusto. In spite of Gary's (and thus the CCG's) deflection of politics, I will show that such rhetoric of awareness advocacy cannot be decoupled from the overtly political field of women's heal th, in which Gardasil, HPV, and CC are all implicated. Since early 2006, before Gardasil's U.S. approval, I have been intrigued by how Merck and Co., Inc. produced the convenient slippage that framed Gardasil as a cancer vaccine, rather than as a preventi ve for a ubiquitous and easily transmissible STI. Of the more than 40 sexually transmitted types of HPV, 13 types cause CC wh ereas other types cause genital warts. Men and women can both get HPV, which may lead to oral, cervical, anal, and much less often, penile cancers (Guiliano and Salmon 2008). A quadrivalent vaccine, Gardasil protects against genital wart causing HPV (6, 11) and two types (16, 18) associated with CC. Although HPV has no cure besides "watchful waiting" and is an extremely common difficult to prevent STI, mortality due to CC in the U nited S tates reflects other racial and socioeconomic health discrepancies and about 4 000 women die annually (Campbell et al. 2012; Singh 2012). These are also women who may have the greatest difficulty affording the most expensive vaccine on the market Gardasil confers some meaningful benefit to its recipients, but it fails to eliminate HPV related morbidities or the risk of CC entirely. The emphasis on cancer in Merck's marketing and in patient led ca mpaigns is worthy of deeper examination; i nteresting parallels emerge between the HPV/CC advocacy movement invigorated by Gardasil's availability and the U.S. breast cancer advocacy movement The staunchly apolitical and corporately complicit HP V/CC awar eness movement emulates a strand of breast cancer awareness bathed in (nonthreatening) pink Both movements are implicitly steeped in gender and health care politics, but corporate sponsorship and allegiance are not an inevitable outcome of health based so cial movements. Although such an alliance provided mainstream legitimization of CCG members' health experiences, it also produced an unproblematized and inter dependent relationship on a company whose marketing fail s to disseminate more accurate information about HPV/CC or the broader challenges of reducing the spread of HPV. A s I will show, the CCG embraced Merck's definition of empowerment and deliberately renounced political aims Despite nearly 50 years of scie ntific awareness of the link between HPV and CC (zur Hausen 1977 1996), the general public's knowledge of HPV appears to have been inconsistent before Gardasil. In a 1999 New Yorker a physician framed HPV as an infection almost no one knew about (Groopman 1999), a lacuna that endured through the initial availability of Gardasil (Zimet et al 2000 2005). Similarly, there is a paucity of social science literature on CC and HPV prior to the vaccine, with the exception of a few scholars (Casper and C larke 1998; Howson 1998 2001; Kaufert 2000 ; Kavanagh and Broom 1998). The marketing of Gardasil thus provided HPV's first mainstream representations.
3 Distinct from 30 years of vocal U.S. advocacy for breast cancer research and awareness, Gardasil's arriva l offers the opportunity to consider an advocacy organization and its cultural signifiers as it emerged in the early 2000s. In particular, I examine how an organization like the CCG which embraced a depoliticized patient consumer advocate position, and th e corporate sponsored "education" around Gardasil de fanged CC/HPV advocates' rhetoric 2 Starting with a critique of a particular form of U.S. breast cancer advocacy, this article contextualizes CC survivor advocacy in relation to its predecessor of patient advocacy Gardasil's U.S. availability produced an awareness of HPV and CC framed by "corporate models of care" (Jain 2007), in which participation in consumptive behaviors demonstrates a combination of choice, autonomy, and ownership of one's illn ess However, this framing ignores the vaccine's epidemiological limitations producing an incomplete form of empowerment Methods The research in this article builds on five years of fieldwork, during which time I followed Gardasil related social and cultural debates. My fieldwork included observations in a Los Angeles community of non vaccinating and "slow" vaccinating natural health parents, among whom I conducted 12 repeat interviews with mothers, to better understand U.S. parents' forms of resista nce to vaccination and how it might be similar to or differ from resistance to the HPV vaccine. I conducted six interviews with public health officials in the L.A. C ounty departments of women's health, immunization, and sexually transmitted disease and wi th three physicians at a low income family practice clinic in south central L.A. I attended the 2006 FDA hearings for the initial approval of Gardasil t he 2007 and 2008 CCG conferences, and the 2008 annual CDC immunization conference in Atlanta ; I also conducted traditional and online media analyses. Research included participation observation with two grassroots organizations one a black women's health organization and the CC group I discuss here. With both groups, I volunteered time to help them with various initiatives. In May 2006, via email, I requested an interview with Merck's biologics dir ector which was passed to Richard M. Haupt Merck's vaccine division's executive medical dir ector of Policy, Public Health & Medical Affairs In Dr. Haupt's r esponse, a n email exchange between the two men was accidentally included noting we may want to make sure she [Samantha] actually is a graduate student After multiple emails to set up a conference call it was rescheduled repeatedly and ultimately cancelled with no explanation. Thus all interpretations of Merck's intentions depend on public materials or Gary's explanations of CCG's relationship with Merck Gary, who owned a molecular/pathology laboratory, but is not a doctor, co fou nded the nonprofit organization with his wife, Margie, 15 years ago. At the time of the CCG's founding, neither had cancer, but a couple of years later, Margie died of a non cervical cancer. Gary expanded the CCG's scope, often invoking Margie's influence and commitment to the project After Margie's death, Gary met Larissa, a woman who would identify herself, including in a popular national magazine article about Gardasil, as having "a very strong, persistent virus [HPV] ." Gary and Larissa ran the organiza tion together, sharing leadership roles, but Gary was its public representative. I first met Gary and Larissa at the 2007 CCG conference. After moving to Los Angeles, we discussed how I could volunteer for the organization. Gary and Larissa ran the nonprof it out of their home north of Los Angeles in addition to holding full time paying jobs. The CCG had no dedicated office space and existed mainly as an online presence with the annual conference
4 as the group's main event. Much of the work they asked me t o do was to be done remotely via email correspondence I helped synthesize existing materials for one of their projects, "Parents E ducating Parents," and they hoped I would become a contributor to future projects, although I demurred at producing new content to better observe the information they generated around HPV/CC CCG 's members lived across the U nited S tates joined by shared medical diagnoses The advent of fairly ubiquitous access to online content resulted in an increase in members' participation over the years of my fieldwork. During the research period (2006 10), CCG's website added a virtual community board where people posted discussions, seeking support and affirmation through others' experiences with HPV / CC. The communi ty board's hosting site changed during my research. Originally exclusively run by the CCG, the newer website was an umbrella site for communities of people with a variety of health concerns ; its slogan proclaimed, T ogether we're better." I had limited in person contact with CCG 's members but was able to observe interactions online through forums and CCG's regular newsletters. This form of fieldwork has become increasingly common. It nevertheless poses certain limitations, including ambiguity in one's relat ionship to the community (whether one is a participant or an observer) as well as questions of whether one ought to read the community as a text or understand it as place (Milner 2011). Although written forms of communication can be revealing, many of the ideas I developed about the people who posted on discussion boards could not be contextualized beyond the personal narratives presented there. This project followed institutional review board ethical guidelines for participants met in person ; for online da ta, it used publicly available information collected such that persons were not identifiable. Informed by these sources, I explore how one grassroots organization responded to Merck's positioning of Gardasil as an apolitical female empowerment commodity. In particular, I trace how the marketing of Gardasil intersected with self identified HPV and CC survivors' advocacy efforts, in which advoc ates staked a claim as consumers, not as patients or political activists, and thus as subjects who could invoke choice and knowledge through forms of consumptive practices. This article situates the construction of HPV/CC advocacy in the context of a simil arly corporately informed breast cancer advocacy This evolution of patient as consumer is not new but its ubiquity in HPV/CC awareness illuminates an increasingly common practice that invokes well established practices in breast cancer activism. Pat ients as Consumer Advocates Breast cancer has gained increasing attention in the last two decades and has become one of the more prominent women's health concerns in the late 20 th century. Calling breast cancer a rallying cause for women, regardless of pol itical affiliation or beliefs about other women's health needs (such as contraceptive access), Ehrenreich (2009) acerbically argues that "[t]o some extent, pink ribbon culture has replaced feminism as a focus of female identity and solidarity" ( www.salon.c om/mwt/2009/12/02/womens_health ). Worldwide, breast cancer is the most commonly diagnosed cancer and the leading cause of death for women (Jemal 2011:71). In the U nited S tates it is the second most commonly diagnosed cancer. The National Cancer Institute estimates that 230,480 U.S. women will be diagnosed annually and that 39,520 of them will die (http://www.cancer.gov/cancertopics/types/breast). In contrast, the very low U.S. rates of CC mortality have received significantly less attention and produced less publicly recognized social
5 movements than breast cancer. CC's necessary and preceding infection, HPV, however, is considered the most common STI in the U nited S tates Scient ists long suspected CC might have a sexual transmission component, but it was not until the 1980s that scientists confirmed the association between HPV and CC (zur Hausen 1977, 1996). Most contemporary research suggests that the development and subsequent institutionalization of the Papanicolaou ( P ap) smear reduced U.S. CC deaths (Casper and Clarke 1998). 3 Indeed, cancer causing HPV has no visible symptoms, adding to patients' difficulty in recognizing the infection and necessitating physicians to intention ally screen for the virus. Men do not get screened, and there is no male universalized, institutionalized intervention like the P ap smear. Although breast cancer advocates protested extensively after mammogram screening guidelines shifted (Lakoff 2009), th ere has been no comparable public outrage as a result of ongoing CC screening guideline changes in the last 15 years. The re are multiple reasons for this. Cervi x es and the required gynecological interventions differ from breasts' visible prominence and co nnotation of sex and maternalness, even as the cervix is an essential part of sex and childbirth, an indicator of a baby's imminent arrival. Unlike breast cancer, CC remains a hush hush condition, 4 partly due to its association with sex and the quasi invis ibility of the cervix. Breasts connote femininity in a way that cervi x es do not. Confronting this visibility, some breast cancer activists have engaged with a variety of embodied practices such as bearing their scarred chests post mastectomy or refusing p rosthetic breasts (Klawiter 1999) that have no parallel for CC survivors. Without en masse Annie Sprinkle like performativity of the cervix, markers of CC demand intimacy, usually reserved for one's gynecologist. The transformation of illness into an acces sorizable self identity (and risk) can be seen in the breast cancer movement (Kolker 2004), as well as other U.S. patient communities. The demand for a "cure" for breast cancer (King 2006:xviii xi) exemplifies broader U.S. shifts in patient advocacy, namel y the consumerization of health and patients' declaration of embodied knowledges (Howson 1998; Kavanagh and Broom 1998) as a challenge to medical and scientific authorities. I consider embodiment here as an "ownership" of one's disease state that may transform patient experience s into consumer practices. Diagnosis is then phenomenological, but it is also something that a woman carries with her, an accessory to her identity, as part of a risk state (Kavanagh and Broom 1998). This differs from lifestyle or environmental risks, in which the threat is external/behavioral rather than a bodily threat. Through disease ownership, advocacy may become implicated in consumerism. The increased advocacy for breast cancer research coincided with a broader push for equality in health research for women and minorities. In 1993, the National Institutes of Health formalized the importance of explicitly including women in biomedical research (Epstein 2004). Kolker (2004) suggests that breast cancer advocates succeeded in prioritizing the disease by transforming breast cancer from a private to a public concern. 5 In so doing, breast cancer research advocates produced a cause that funders and researchers found difficult to ignore ; in this demand for public recognition advoc acy elided with consumer practices. Breast cancer has generated a multi million dollar industry that explicitly ties consumer practices to finding a cure ( Jain 2007 ; Kolker 2004). The pink ribbon campaign, begun by cosmetics company Est e Lauder in the early 1990s (King 2006), directs funds from purchases of pink colored products to the Susan G. Komen Foundation whose activities include the annual "Race for the Cure" (Silverstein 2011). Many U.S. companies have participated in the breast cancer awareness movement, branding their products with the pink ribbon or selling special
6 versions of existing products in unconventional baby pink, with promises that an undisclosed portion of any purchase price w ill support breast cancer research (Ehre nreich 2009). October is now National Breast Cancer Awareness Month s tarted by a chemical company turned pharmaceutical company, Zeneca (now known as AstraZeneca 6 ) in the mid 1980s (King 2006:xx xi ; Klawiter 2002 ). Nearly 30 years later, the October pink branding, or pink washing, publicity remains ubiquitous: from a New York Times Styles' cover story "Laughing at the Big C" and a large ad for breast cancer awareness directly below the story's second page (October 9, 2011) to "31 Days of Pink Action" (http ://ww5.komen.org) to dedicated October issues of women's magazines, which intersperse articles and "advertorials" featuring pink products ( Self 2011 : 98 121 ). Breast cancer public campaigns for pink branded products often come from companies that do not explicitly stand to gain from consumers who may be treated for cancer. Some have argued companies that donate to breast cancer research produce products that con tain toxins believed to contribute to the rise of breast cancer (http://bcaction.org/our take on breast cancer/environment/). Breast cancer public awareness corresponds with increasing consumerization of patients and the harnessing of advocacy to consump tive practices (Ehrenreich 2001, 2009; Gibbon 2006; Jain 2007 ; King 2006 ). Organizations like Komen have produced "everyday activists," through purchasing practices and pink bracelet adornments (Selleck 2010:123). These forms of participation do not foment change but rather claim identification with those affected by breast cancer or those who have survived it (King 2004:478). These shifts have produced a corporate construction of disease, replacing, I argue, the social construction of illness as a preemine nt way of knowing one's illness and related treatments (Applbaum 2006 ; Moynihan et al 2002 ). Indeed, the U.S. approval of direct to consumer advertisements by pharmaceutical companies in the 1990s coincides in suggestive ways with a rise of health social m ovements (Barker 2008 ; Kolker 2004 ) and "disease awareness campaigns" (Applbaum 2009). Health is its own ideology ( Chrysanthou 2002:471 ), and in turn patient identities may form "disease constitutencies" (Epstein 1995:410). U.S. market based structure of healthcare delivery, with profit oriented insurance companies and pharmaceutically funded health research, has also contributed to the transformation of patients into consumers. Due to increasing restrictions on how pharmaceutical sales representatives ma y court prescribing doctors, known as pharmaceutical detailing, and after many years of decadent meals, all expense paid trips, and other indirect benefits to garner allegiance to a particular drug brand ( Carlat 2007 ; Oldani 2004), companies now focus on i ncreasingly vocal patient communities. P atients become instrumental in the distribution of pharmaceutical products, shifting from "recipients of medical care to active consumers," which in turn affirms patients' "self determination through choice" (Applb aum 2006:0446 4 7). Physicians become "providers," and patients are transformed into healthcare consumers, replete with the expectations of consumer behavior and choices: "A consumer is guided by caveat emptor' an adversarial injunction and hardly a senti ment that fosters the atmosphere of trust so central to the relationship between doctor or nurse and patient" (Hartzband and Groopman 2011:1373). The CC G advocacy movement exemplifies these semantic shifts concretely. Unlike the political ly and scientifically engaged breast cancer and AIDS activists who demanded changes to established practices, the CCG activities, fueled by Gardasil's availability, epitomize an activism of awareness, which avoids political claims challenges to existing pra ctices and prioritiz es self actualization (e.g., screening for cervical abnormalities and vaccination of one's children) as
7 empowerment. I consider the contours of this newer subject position, the patient consumer advocate, as manifested in Merck's marke ting of Gardasil Gardasil and the Corporate Construction of Disease Shortly after the vaccine's FDA approval, 22 state legislatures attempted to pass laws requiring the vaccine for school entry (Saul and Pollack 2007). These days, school entry requi rement s for vaccination do not often elicit broad public resistance as such laws are common in the U nited S tates (Colgrove 2006). Yet by early 2007, only six months after the vaccine's FDA approval, all but two proposed bills failed in their state legislat ures, possibly undermined by the revelation that Merck actively lobbied for these bills (Pollack and Saul 2007; Saul and Pollack 2007). Most dramatic was Texas governor, and subsequent 2012 p residential candidate, Rick Perry's attempt to override legislati ve debate by instituting the school entry requirement (Blumenthal 2007). Parents threatened to sue him, and the Texas legislature overturned the mandate, accompanied by national coverage of the incident and accusations that Merck's contributions to Perry's election campaign had motivated his actions (Hart 2007). Although many proponents of the vaccine expected resistance to its dissemination to be about sex and (young) female sexuality (Pollitt 2005), most critiques focused on parents' rights to determine w hat was best for their children's health. Gardasil public debates referenced preceding and ongoing U.S. conversations around vaccines and government regulation of parenting. T he lobbying for Gardasil and media representations of parents' responses neatly sidestepped the underlying implication of the vaccine: S omeday, everyone's daughters will be sexually active (Braun and Phoun 2010). Instead, Gardasil was the cancer vaccine, and combating cancer is a nearly unimpeachable cause in the U nited S tates From its inception, Gardasil's marketing strategy tapped into the power of the testimonial and confessional with its "Tell Someone" campaign, tacitly acknowledging the public ignorance of HPV without confro nting the STI protection that the vaccine offers Merck's campaign teasers began prior to FDA approval, providing little explicit explanation of what one ought to tell. The advertisements promoted female intimacy and confidences; women proclaimed, "Cancer caused by a virus? I didn't know that!" In November 2006, Merck changed its slogan to "One Less" and later to "I Chose," reflecting classic tropes of health promotion and intervention. M essages were gendered and evoked cultural norms of maternal responsibi lity that a good mother vaccinates her daughter (Mamo et al 2010). As a Merck representative explained in an industry newsletter: "The insight there was that young women really want to be responsible for their own healthcare and take control of their own lives," says [Bev] Lybrand [Merck representative for adult and adolescent vaccines], "and moms want to do everything they can to protect their children." Advertising by DDB NY employed a forthright tone, with young women speaking directly to the camera, m eant to communicate authenticity to cynical younger viewers used to being bombarded with health and safety messages in ads [ Arnold 2008 ] Though unsurprising, there were no advertisements of fathers expressing concern for their daughters' health. Merck in itially sought approval for boys and girls in 2006, but FDA approval for boys did not occur until October 2009 due to the limitations of the 2006 research done on males. 7 Thus the focus on young women dr aws on both historical and cultural norms of
8 female bodies as site s of regulation, intervention, and surveillance including the entrenched practice of the P ap smear and the in stitutionalized expectation that women bear the responsibility for healthy reproduc tive tracts A lthough men and women are both affected by HPV, Gardasil remained a gendered product for its first three years on the market further obscuring its STI protection and emphasizing CC. Merck concurrently developed multiple websites, which did n ot explicitly reveal their link to Gardasil, promoting female empowerment and camaraderie around CC and HPV. One website, Make the Connection, formally sponsored by the Step Up Women's Network and the Cancer Research and Prevention Foundation, with "suppor t from Merck," offered a bracelet making kit that women could receive by mail (www.maketheconnection.org). Like the Lance Armstrong Foundation's "LiveStrong" yellow rubber bracelets, are now synonymous with generalized cancer awareness, the Make the Connec tion beaded bracelet suggested a visible way to raise public awareness for CC/HPV. Yet the Make the Connection campaign did little to attract the publicity that Armstrong's foundation has generated. Merck offered to give $1 to charity per kit, but they did not keep the offer open indefinitely. When I requested a kit in August 2006, less than a year after the program's inception, the website informed me that they no longer provided the kits. Unlike "LiveStrong represented and driven by a celebrity spokes p atient, Merck's marketing budget, rather than a social good, drove the ir bracelet campaign. In October 2011 the site inform ed visitors that one ought to contact the site's owners, a public relations firm, for more information (www.maketheconnection.org). Thus, six years later, the campaign no longer has a public presence, which is strange, since HPV and CC rates have not radically diminished since Gardasil's approval. Nevertheless for CCG members, the new HPV vaccine seemed revolutionary, an option that m any wished they had received before developing cervical abnormalities. Many were CC survivors, although some self identified as having "persistent HPV." In every CCG public presentation, Gary reminded everyone to "vaccinate early!" along with other pre vac cine era reminders: "Pap test regularly" and "HPV t est when recommended." One of the CCG's missions was to empower CC patients and to minimize the shame many of its members felt. De stigmatization included a proactive management of HPV and CC narratives. A s I observed in the annual conferences, members with persistent HPV or CC proclaimed their survivor's perseverance. Most of the stories started with the clinical encounter, when the amorphous infection became something un invisible. In contrast, b reast c ancer diagnosis usually begins with the palpation of the breast. A woman feels a lump. Or, unsuspecting any pathology, a woman goes to get her mammogram, and the abnormality is visible to doctor and patient alike ( with the physician's translation for the p atient). HPV and CC diagnoses diverge from the breast cancer narrative. There's the duck billed speculum, a physician crouched between a woman's legs, and the pathology lab's inspection of millions of cells trying to identify something amiss in the midst o f hazy clusters. A doctor may share with her patient data and risk prognoses transformed from a visual representation of cellular activity. These practices highlight the technologies and medicalization intrinsic to the women's health practice that has long been considered the gold standard of public health screening tools (Clarke and Casper 1996). Prior to developing CC, women can also be diagnosed with a range of pre cancerous states The advent of the HPV DNA test has allowed providers to tell women if th eir abnormality indicates the high risk (associated with potential progression to CC) or low risk HPV. Women may also receive false positive P ap smear results, false negative results, or overtreatment with highly invasive methods. The progression from init ial diagnosis to cancer is full of uncertainties
9 and varied diagnoses (Howson 2001), and this is true across cancer types, as evidenced by recent concerns about other cancer diagnostic tests, like the prostate specific antig en test. Even if not explicitly affecting awareness of HPV and CC, these muddled scientific and medical trajectories may contribute to the absences of and gaps in public representations of HPV and its related cancer (Braun and Phoun 2010), none of which is radically disrupted by Gardasil 's availability. What Gardasil offered CCG members discursively is nonetheless important, as the vaccine promised to open up new ways of talking about HPV and brought their experiences into public discourse. There are of course consequences to the CCG's embrace of Merck's Gardasil rhetoric. Legitimization of CCG members' experiences produced by the vaccine entailed members' tacit buy in as consumer advocates, transforming the disempowered patient in to the beholden consumer. The CCG was the perfect complement to Merck's marketing, as a small, grassroots advocacy and support group. A couple of months after the 2007 CCG conference, I met with Gary at his home. Describing the projects he imagined for the organization, Gary mentioned a P arents E ducating P arents presentation on Gardasil that he wanted to disseminate across the country and that he hoped I would help to develop Gary imagined it as a grassroots movement. He envisioned generat ing interest among parents which might lead to legislators paying attention to CC and Gardasil I asked if that were his goal, to get it made into policy, and he insisted that they "don't play politics." He smiled at me, as though I had tried to get him to say something incendiary. I mistakenly assu med that advocacy included an explicitly political element. Instead, he saw it as an opportunity to persuade parents hesitant to vaccinate their daughters with Gardasil to do so Gary sought an awareness of the general public and private actions that did n ot necessitate broader social action. Gary's ambiguous grassroots movement language and his refusal to call their activities political confused me. He sought a response from the legislative sector, and it certainly had political implications. His apolitical claims also denied the last year and a half of politically framed Gardasil debates, as well as the history of U.S. debates around women's sexual health, more generally. For a movement that drew on past patient advocacy movements, such as the bre ast cancer movement, to decouple it from politics seemed a willful refusal of how politicized health care is in the U nited S tates and the cultural implications of targeting young female bodies for intervention. Gary's term "parents educating parents" evoke d Merck's framing of Gardasil as a benevolent project, with shared investment in knowledge, rather than (Merck's) opportunity for market expansion. Just as Merck's campaigns and their invocation of female camaraderie positioned the vaccine as a health nece ssity rather than a commodity, CCG reproduced Merck's careful strategy to avoid potentially contentious aspects of the vaccine. Like Merck calling it a cancer vaccine, Gary's insistence that they were not playing politics replicated Merck's evasion of the most politically charged elements of the vaccine: its STI protection. Strategic Alliances Gary explained that Merck would contribute to the parents' project. 8 Unprompted, he expounded that just because they received pharmaceutical money, it was not nec essarily bad. He acknowledged that some people believe that pharmaceutical money implied compromised efforts; CCG did not agree. In January 2008 CCG's website republished a marketing article dubbing Merck an "All Stars Company of the Year": "Gardasil, the HPV vaccine that turned Merck s corporate reputation from disgrace to that of life saving innovator, has also provided a
10 case study in the company s global marketing muscle" (Arnold 2008). CCG honed their ability to straddle private industry funding to en sure that their goals were met. It would be unfair to criticize CCG's mission to improve women's health, but Gary's disavowal of politics and willingness to accept pharmaceutical money seemed untenable. As Gary's acceptance of Merck resources and framing o f Gardasil suggest, the synergy between Merck's and CCG's rhetorics was strategic to both parties. The CCG's occasional newsletter, "Inspirational Tales," featured CC survivors' intimate familiarity with the disease. One newsletter included four pages of testimonials from women who endured CC diagnoses and treatments. T he newsletter proclaimed: "Here ar e our members [ sic ] stories of struggle, determination survivorship [ sic ] and HOPE!" All nine testimonials acknowledged previous ignorance about CC and HPV. One survivor echoed Gardasil's pre licensure campaign: "Just like the commercial says, Tell Someone Anyone who will listen' [italics added]. Another young woman stated, "I know I can't get the word out to very many people [ sic ] but if I can teach just one person more about this terrible thing then I feel that I have saved a life." Thus, informat ion dissemination stands in for any sort of action. One woman reinterpreted Merck's campaign, "Now I want to let every woman know cervical cancer is no longer a death sentence." In spite of knowing that Gardasil does not prevent cancer but its cause, HPV, these testimonials appropriated the story Merck sought to sell. As CCG increased its public presence, shortly after Gardasil's availability, the parallels in the CCG's promotional strategy and Merck's exhortation to tell someone became increasingly less s ubtle. Tying consumer choices into a form of advocacy and social identification, CCG sent out frequent emails announcing new affiliations with a variety of online fundraising and social networking sites. Providing an indirect way to raise money, CCG's webs ite included sidebars that encouraged its members to sign up for "eScrip" that offered, "3 easy ways to earn for our [CCG] group When people purchased products online through the link, CCG would get a small portion of the profits. The CCG's website inclu ded promotional links to Facebook, MySpace, and iGive.com, which revealed a desire to engage with the increasingly common use of the Internet for social networking as a revenue stream. A dvocacy groups that accept pharmaceutical funds or tie their advocacy work to corporate sponsorship are in fact complicit in creating the marketing and consumer loyalty for which manufacturers strive. The participation in consumer patient advocacy identity allows the corporation to define what conditions deserve attention. As Jain argues, [I]n these models of corporate care, everyone has their role and the scripts for these roles seem to be provided by, on the one hand, the caring corporation that allows us to play our roles through consumption and, on the other hand, the role of "survivor," which seems to revel in narratives of the gift of cancer [ 2007:520 ] Further, "the role of capital is incidental to none of this neither the production of cancer, the models of treatment, nor the core centrality of the nuclear family a s the consumptive unit" ( Jain 2007 :528). The CCG's awareness activism endorsed the patient consumer advocate, which pharmaceutical companies have crafted carefully and intentionally. Through traditional and social media representations, the CCG members pro duced public narratives about CC / HPV that they were eager to share. Their uncertainty about their disease and their skepticism of
11 medical authorities were more genuine than if Merck had enlisted celebrity spokespeople to promote the vaccine. The appropriation of Merck's advertisements and other health promotional phrases allowed participants to celebrate public depictions of their experience representations that were absent prior to Gardasil. No longer diagnosed with an invisible or stigmati zed condition, CCG members defend ed knowledge of their own bodies. T hese contestations reiterate pharmaceutical and medical framings that intertwin e citizenship with the "power of the consumer's purse" (Jasanoff 2004:91). Gardasil marketing endorsed such i nterrelated consumerism and citizenship, and the CCG purposefully built on these. As bearers of the disease, many members of the CCG articulated their shared identities through their medical experiences. The opportunities for "biological citizenship" (Rose and Novas 2002) and "contemporary practices of identity" (Novas and Rose 2000) were expressed in the CCG members' demand for accountability from medical experts at CCG annual conferences, challenging "professional expertise" through "their very distinct e xperience based knowledge" (Lehoux and Blume 2000: 1088; see also Callon et al 2009 ; Epstein 1995 ). T his expression of embodied expertise resists others' claims of authority as alienating and abstract (Kavanagh and Broom 1998; Reventlow et al. 2006 ). At t he same time, in CCG members' appropriation of the rhetoric of Merck's advertising campaign, we can see how information dissemination replace s action for which some of the breast cancer movement has fought, namely agitation for broader political changes in gynecological care and/or cancer research. Indeed, although Gardasil's clinical benefit is the reduction of morbidities and decreased risk for CC, research on U.S. CC deaths also suggests that women who die due to CC are women who lack access to care and are disproportionately non white (Singh 2012). Gardasil's promise and CCG's embrace of it thus fail to address one of the core reasons for continued CC deaths: lack of access to care and larger social inequalities. Instead the CCG advocated an apolitical stance of self awareness that, I argue, cannot be parsed from consumer identity. Indeed on the release of Gardasil, CCG focused its mi ssion on supporting the vaccine. In December 2007, a major women's fashion magazine included a two page spread paid for by CCG, reiterating health consumer empowerment language and Merck's assertion that vaccination w as the responsible choice: "Learn the T ruth about HPV" and "Educate Yourself" (implied: because no one else will). Self actualization was encouraged, from acquiring knowledge ("Learn the truth") to "Help protect yourself," as though not choosing the vaccine were an abandonment of self care. I t echoed language I heard elsewhere : in the L.A. County's quarterly immunization coalition meetings' promotion of overall vaccination practices ; in CDC immunization materials and its annual immunization conference ; and among physicians I interviewed who prom ote d the HPV vaccine as an uncomplicated choice. Now the right choice was clearly to vaccinate, while the irrational one was to leave one's cervical health to (unvaccinated) chance. CCG's magazine advertisement was interrupted in the middle by Merck's own Gardasil advertisement an ad inside an ad Although CCG's public service advertisement emphasized knowledge, education, and truth, the Merck insert muddled the distinction between the corporation and the advocacy organization. The branded promotion undermined the non profit organization's intended benefice nt tone. On the first page of CCG's page under CCG's "Learn the truth," the advertisement was "Brought to you by the [CCG] and Merck & Co., Inc." Accepting money from Merck, as Gary had admitted, was a compromise needed to accomplish their advocacy work.
12 CCG did not seek to endorse the particular vaccine, as a commercial object, but they did want to promote an HPV vaccine for women, as a medical intervention. Due to the absence in the U.S. market of the GlaxoSmithKline HPV vaccine, Cervarix, which would no t receive FDA approval until late 2009, those who promoted an HPV vaccine were tacitly, if not explicitly, endorsing one pharmaceutical company and one vaccine. In this instance, the branded nature of the medical intervention shaped how individuals might u nderstand the vaccine preventive. As active health consumers, CCG members did not define themselves as spokespeople; they offered intimate testimonials, thus producing a consumer as advocate persona that is increasingly common in non health settings In t he process of consumer endorsements and advocacy trumpeting the vaccine, Gardasil's availability shifted the framing of gynecological interventions, as though one were not still at risk for CC after the vaccine ( which is the case). "A woman who does not ha ve her three shot prevention vaccine and her regular Pap test screen and HPV test when recommended, significantly increases her chances of developing cervical cancer" (CCG website). Thus, the conflation of not vaccinating with an increased risk for CC posi tions women as consumers who ought to choose to participate in a clear consumptive practice. Without intending to, the CCG admonitions reframe d possible stigma, failure to vaccinate makes one culpable for one's cancer (risk). By refusing a political form o f activism, the CCG accepted and co created a prescribed form of engagement, one manufactured by a company with its own profit objective. Discussion and Conclusion This article contributes to the literature on health advocacy movements by examining how patient advocacy may transform patients into cons umers. Merck's marketing of Gardasil offers insight into the creation of this patient consumer advocate identity. Although the data do not draw on direct research with the pharmaceutical industry, I have focus ed on public representations of HPV/CC by Merck and the effects on its target audience : women and girls. Merck's own media reveal a deliberate decision to frame Gardasil's value by dodging its more controversial benefits. Although the breast cancer a dvocacy movement developed out of diverse forms of activism ( King 2006 ; Klawiter 1999, 2002, 2004), both by agitation for more research and better access to treatment, as well as by beribboned commodified forms of advocacy, the CCG staked its role and advo cacy community on the campaign of a publicized and marketed medical intervention. This article suggests that it was the Merck led campaign that helped CCG coalesce its own position and gather momentum for its longstanding cause rather than politicized dema nds for treatment and more research that can be seen in the earlier days of breast cancer advocacies. Merck had more to gain from the collaboration than CCG or its members. As with the pink branded breast cancer awareness, the apolitical patient advocate c onsumer identity serves larger corporate interests and raises questions about the benefits to the patient community themselves. A recent visit to CCG 's site (March 2012) announced that it had been incorporated into a larger coalition of sexual health group s. The power of consumer identity tied to patient advocacy of course outlives the examples discussed here. T he 2011 FDA decision to revoke the manufacturer Genentech's right to market Avastin for metastatic breast cancer because it was neither safe nor effective elicited an outpouring of objections from women for whom the drug worked. In spite of population data that suggested the risks of Avastin outweighed the benefits, women stepped forward offer ing their
13 bodies as proof positive that they were alive because of their access to the drug (Pollack 2011) As with CCG's Gardasil advocacy, breast cancer survivors claimed intimate expertise to support their pleas to the FDA. Genentech's rallying of women as testament to Avastin's effectiveness is yet another example of the confounding of citizenship, advocacy, and consumer behaviors that is increasingly difficult to disentangle. Cancer drugs, in particular, have received more lenient approval in the last ten years or so, as advocacy organizations have increas ingly pressured the FDA to allow for experimental treatments (Harris 2009). As pharmaceutical companies have been restricted from targeting physicians to generate sales, the turn toward the patient as advocate and consumer has generated new forms of patien t activism, which I have argued is the apolitical activism of awareness. Gardasil and Avastin provide examples of patients, women specifically, as powerful marketing mechanisms at a pharmaceutical company's disposal. Gardasil was not the first nor will it be the last, but it exemplifies one manufacturer's cultivation of a visible and active patient population that willingly endorsed a corporately defined medical intervention. Notes Acknowledgment s This research was funded by the National Science Foundation a nd the Wenner Grenn Foundation. The author appreciates the insights and contributions of the anonymous reviewers as well as Hadley Leach, Avi Brisman, and Lauren Heidbrink. 1. All names are pseudonyms. 2. As distinct from the very visible and political HIV/AIDS activism of the 1980s, when patients agitated for recognition and improved treatment options. 3. Some scholars dispute the role o f the P ap smear in reducing cervical cancer deaths (L wy 2007; Teixiera and L wy 2011). 4. One counter ex ample is Jade Goody, a U K reality TV star, who was publicly diagnosed and subsequently died of cervical cancer. Public representation of cervical cancer death has no parallel in the United States. 5. Concurrent with reframing of the public imagination of breast cancer was the discovery of HIV/AIDS and a growing movement throughout the 1980s of AIDS activists ( Epstein 1995). The gay rights' movement around HIV/AIDS has significantly affected health advocacy movements, but I will not explore it in this arti cle 6. AstraZeneca is the manufacturer of the commonly used breast cancer drug T amoxifen. 7. The 2012 advertisements for vaccinating boys and girls simply state Both," or "One Less," with the o" incorporating a symbol for both male and female, the cross pointing down (female) and the arrow angling out to the right (male). The presumed universality of the vaccine has not elicited comparable debates or objections as the initial availability (for girls' vaccination) did, but there has been no accompanying p olicy push for male vaccination. 8. In one email exchange between a Merck communications' employee and Gary, Merck offered as a spokesperson a woman whose daughter had died of cervical cancer at a young age.
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