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Prejudicial Distribution of the HPV Vaccine

[1] Release of Human Papillomavirus (HPV) vaccine on the market sparked controversy: Teen girls, sex, politics, religion, and cancer intersected in the push to inject the vaccine into arms. The focus of this paper is the mythology of the vaccine, and the means in which various standpoints have created a discourse about HPV vaccine. I draw my findings from a qualitative discourse analysis of the public discussion and debate about the vaccine, including such literature as biomedical journal articles, newspaper articles and opinion pieces, blogs, internet sites devoted to the HPV or other vaccines (both pro and anti), and pharmaceutical company literature, to explore manipulation in the discursive practices of collective representation.

[2] I do not intend to argue against HPV vaccine as a protection against cervical or other cancers. Certainly the vaccine is to be credited for saving women’s lives, particularly in areas where access to preventive health care is low. Rather, this work explores the collective representations surrounding the vaccine. At issue is a medical intervention, yet this intervention is laden with social meanings.

[3] The HPV vaccine is the only vaccine to be targeted toward women. This targeting has resulted in a language of manipulation and, in the case of school-based mandates, outright coercion. The discourse is filled with a variety of threats to further the aim of powerful social groups, including those interested in vaccinating women, such as pharmaceutical companies, physicians, and public health, and those in protest of the vaccine, such as some fundamentalist religious groups and vaccine safety organizations.

Human Papillomavirus and Vaccine

[4] In the United States, genital HPV is the most common sexually transmitted disease (Gerberding 2004). Genital HPV infection is transmitted through skin-to-skin contact and cannot be completely prevented via condom use. While more than 100 types of HPV have been identified, only about forty strains of HPV affect the genital areas. Two of these strains, HPV types 16 and 18, are credited with causing most (but not all) cervical cancer. Currently, two FDA approved vaccines provide protection against these types – Gardasil and Cervarix. Gardasil also provides protection against types 6 and 11, which are associated with genital warts. Both vaccines protect against 70 percent of the HPV strains that can cause cervical cancer, and Gardisil protects against 90 percent of those strains which cause genital warts (Schwartz 2010).

[5] It is important to note that most HPV infections will clear on their own without causing pathology. Additionally, with regular pelvic exams, cancers of the cervix can be readily identified and treated.

[6] Both vaccines are licensed for females aged 9 to 26. Gardasil has also recently been licensed for males of the same ages; however, the vaccine is not on the CDC recommended vaccine schedule for males, only for females (CDC 2010a). The Advisory Committee on Immunization Practices (ACIP), the group which sets CDC recommendations, did not support recommendation of HPV vaccine for males, stating that it would not be cost-effective to do so (CDC 2010b). ACIP’s decision has important implications. First, physicians consult vaccine recommendations in decision-making for vaccinating patients and are unlikely to deviate from the recommended schedule. Second, vaccines which are not on the recommended list may not be covered by health insurance. Thus the cost of vaccinating males increases; a disincentive for many males to choose vaccination. At present, the HPV vaccine is the first and only vaccine to be recommended for only one sex.

[7] Public health practitioners argue that for a vaccine to be effective it is necessary to establish “herd immunity” to a communicable disease. Optimally, between 90% to 95% of the population should be immune from a disease to keep it from spreading person to person through the population (Krantz, Sachs, and Nilstun 2004). The vaccination of one sex locates responsibility for disease control on the individual rather than on than the collective protection of herd immunity. While men can be a reservoir for the virus, the burden of prevention and control of genital HPV is placed on women.

Theoretical Orientation

[8] As noted in previous work on infectious disease narratives (Abeysinghe and White 2010), the representations of illness consist of surface-level inquiry into the issue itself as well as subjective meanings actors hold surrounding the issue. When exploring HPV vaccine narratives we find underlying currents of social conceptions of cancer, control of adolescent sexuality, and religious overtones.

[9] In her seminal work, Illness as Metaphor, Susan Sontag (1977) explored the social meanings attached to illness, specifically tuberculosis and cancer. There is a strong history of bias and fear about cancer, as witnessed in the long-time reluctance for people to speak the word cancer aloud. Rather, it was referred to as the “C-word” or “the big C,” as if enunciation would imbue it with power to infect the speaker. As if it was magic. While as a society we have gone far to demystify cancer, there is still a fear of “catching” it as we discover cancers caused by infectious agents. Thus, the fear of infection is coupled with the fear of cancer.

[10] Disease historically has been viewed through the lens of moral contagion and character flaws. “In the nineteenth century,” Sontag writes, “the notion that the disease fits the patient’s character, as the punishment fits the sinner, was replaced by the notion that it expresses character” (1977, 43). This notion has been slow to fade from collective consciousness. Particularly poignant among breast cancer patients is the notion that having cancer is a test of one’s character (Ehrenreich 2010; Sulik 2010). How one reacts to the diagnosis, how one copes with the illness, has become a politicized journey. Ehrenreich writes: “In the most extreme characterization, breast cancer is not a problem at all, not even an annoyance – it is a ‘gift,’ deserving of the most heartfelt gratitude” (2010, 32). This gift is the opportunity for a woman to discover ‘what’s really important’ in her life, thereby correcting any character flaws.

[11] Historically, cancer itself was gendered, an anomaly viewed as occurring almost exclusively in women (Comeau 2007). While occasionally diagnosed in male bodies, women were perceived as more susceptible to cancer. Nineteenth century physicians set their gaze on female bodies, specifically on breast and reproductive cancers. Comeau writes:

When the discovery of cell theory began to challenge the view that cancer was fundamentally a woman’s disease, instead of re-considering the reliance on a gendered framework, British surgeons re-incorporated predominant gendered ideologies in a new form where conceptualizations of cancerous disease mirrored the primacy of reproduction evident in prevailing nineteenth century definitions of femininity. In this way, the action and behavior of cancer itself came to be seen through a lens of reproduction that mimicked and recapitulated predominant cultural ideologies of gender (2007, 176).

This connection – this gendering of cancer – has not easily faded and is an undercurrent in HPV vaccine discourse. Additionally, Sontag notes that “cancer is considered to be de-sexualizing” (1977, 13). Loss of sexuality, of sexual drive, permeate the mythology of cancer, and cancer has often been portrayed as a disease of withheld passions. Thus, HPV vaccine may serve to protect femininity.

[12] Durkheim ([1912] 1995) noted that societies create collective representations of social constructions. These agreed upon meanings emerge through discourse – conversations, text, images, and so forth. Yet, Foucault pointed out that creation of collective representation is not a neutral act ([1971] 1972). The manner in which information is framed benefits differing factions of society. Words chosen construct and control collective representations. Language classifies and regulates bodies themselves (Foucault [1961] 1965). Deconstruction of discourse reveals underlying power relations, for the words used mold collective representations – the questions lie in who holds the power to make their words dominate the discourse and who benefits from the resulting representation.

[13] In the analysis of discursive practice one finds two general types of messaging, manipulative and persuasive. Van Dijk (2006) defines manipulative discourse as that in which the point of the message is to force people to do that which is in the best interest of the manipulator, which may not be in the best interest of the people. Herein we find a system of domination and control. In particular, van Dijk writes that manipulation may involve:

  1. Incomplete or lack of relevant knowledge – so that no counter-arguments can be formulated against false, incomplete or biased assertions.
  2. Fundamental norms, values and ideologies that cannot be denied or ignored.
  3. Strong emotions, trauma, etc., that make people vulnerable.
  4. Social positions, professions, status, etc. that induce people into tending to accept the discourses, arguments, etc. of elite persons, groups or organizations (2006,  375).

[14] In contrast, legitimate persuasion recognizes and allows for choice among the listeners. This entails ensuring that the listener is fully informed of the various aspects of the message and is not coerced in any way to choose a particular action. The boundary between the two, van Dijk notes, may be loose: what constitutes manipulation for one person may be persuasion for another. As I will discuss below, HPV vaccine discourse contains high levels of manipulative tactics.

[15] There are many voices in the HPV vaccination discourse searching for dominance. Both the government and pharmaceutical companies are interested in wide-spread vaccination, whether for the goal of disease control or profit margins. Religious groups and social conservatives hone their gaze on the sexuality of teen girls. Anti-vaccination groups denounce the vaccine, often citing safety concerns. Below I discuss these strands. First, I explore the gendering of the vaccine, followed by the framing of vaccine in prevention messages. After that I discuss religious commentaries on the vaccine and discuss the notion of personal responsibility in HPV prevention. I examine the issue of government mandates for the vaccine. Finally, I discuss the role of manipulation in HPV vaccine discourse.

Constructing an HPV vaccine representation

[16] Release of the HPV vaccine for girls gendered the vaccine, despite the fact that both sexes could benefit from protections afforded by the inoculation. Other vaccines exist which are not gender-specific, yet may provide greater benefit to one sex over the other. Mumps, for example, can potentially lead to sterility in males but not in females. Rubella is most dangerous to pregnant women. When a woman is infected during the first trimester of pregnancy, rubella can cause miscarriage or premature birth. Rubella may also lead to a devastating condition known as congenital rubella syndrome (CRS) in infants. CRS infants are often born blind and/or deaf, with cognitive impairment, and suffer from a range of other anomalies, including heart, liver, and spleen defects. Yet neither of these vaccines are targeted solely to women; rather both are on the CDC recommended vaccine schedule for both boys and girls.

[17] In initial trials the HPV vaccine was tested in young women with less consideration for safety and efficacy in men. When eventually licensed for young men the vaccine was expressly excluded from the CDC recommended vaccine schedule for them. Marketing, whether from a public health or sales standpoint, situated the vaccine as a protector of the cervix, that is, protector of women’s bodies from invasion of cancerous tumors. The focus on women for vaccination could be viewed as a paternalistic protection of their femininity. HPV vaccination protects heterosexual and homosexual women, and may provide some protection for heterosexual males via an immune partner, but excludes protection for men who have sex with men. Women’s health is thus privileged over men’s. On the other hand it is women alone who must be protected via injection/penetration of the body with the inoculation’s needle. Women’s bodies are acted upon by the forces of medical social control, required to bear the physical cost of the injection and any side-effects that might follow. Women alone bear both the burden of disease control and the social construction of contagion. In gendering HPV it is women’s bodies that are portrayed as infectious, as (potentially) diseased.

[18] Returning to Sontag’s argument that collectively society tends to frame disease as an expression of character, one wonders if, having effectively been gendered, HPV infection (and by extension, cervical cancer) could thus be viewed as an expression of a woman’s character. Is it a flaw of hers – an inability to control her lust perhaps – that led to her infection? Likewise, vaccination circumvents the need for a woman to control her passions, a notion that draws the wrath of conservative camps. Conservative commentators quickly cited the concern that HPV vaccine might implicitly condone adolescent sex (Chicago Tribune 2005; Stein 2005).

[19] As noted by Mara (2010), the rhetoric of HPV vaccine became intimately intertwined with the phrase “sexually transmitted disease.” The emphasis is thus drawn to the sexual route of transmission, despite the fact that human papillomaviruses may be spread by routes other than sexual intercourse. This tension, between infectious disease and sexual activity, begs the moral question, if the girl is a “good girl” – a moral imperative — why would she need this vaccine? The “good girl” should not by definition be harboring an infectious agent. It is her character which is at issue. If the “good girl” nonetheless contracts HPV/cervical cancer it is then her fault. She could have protected herself against the infection by abstaining or through vaccination (never mind that the efficacy for the HPV vaccine is not 100%). Is the problem then the virus, or is the problem a girl who could not be controlled? (Mara 2010).

[20] Corporate sales materials, on the other hand, explicitly avoid the sex/STD/HPV connection and reframe the issue in terms of cancer prevention. The health message is directed at parents, urging them is to ensure vaccination of their daughters and avoid the scourge of cancer. Research backs up this approach. One study on the framing of HPV messaging found that women were more likely to seek HPV vaccination when information on sexual transmissibility was not included in information about the vaccine. The authors suggest inclusion of STD information heightens social stigma of STDs (Leader et al. 2009). Another study found fears that should women seek an STD vaccine, people might assume they are promiscuous (Friedman and Shepeared 2007). The authors write that many women feel vaccination against a sexually transmitted disease is unnecessary.

[21] Both vaccine manufacturers and governmental agencies refer to the HPV vaccine as a “cervical cancer vaccine” (Schwartz 2010). Rather than advertise an STD vaccine, the central marketing tactic for HPV vaccine is cancer prevention – specifically cervical cancer, obviously specific to women. The fact that the vaccine could protect males against penile and anal cancers is not explicitly advertised. Television ads for Gardasil show strong young women jumping rope, singing, “I want to be one less.” One less what, exactly? One less cancer victim? Or one less victim of her own sexual impulses? Similar ads with young men singing about the desire to avoid penile or anal cancer are missing. And neither women nor men sing about the desire to avoid genital warts.

[22] HPV vaccine advertising co-opts feminist rhetoric about “choice” to twist blame/responsibility for cancer on women. Cancer is situated in a historical and social context (Thorne and Murray 2000). The social construction of cancer is fraught with fear and blame.  Popular representations of cancer are often misleading and overblown, and feed fears about the disease (Burke et al. 2001). The diagnosis of cancer is often perceived as a death sentence (Al-Gamal and Long 2010).

[23] This fear doubles for mothers, who are at an imperative to protect not only their own cervix but also the cervixes of their daughters. Merck has capitalized on the mother-daughter relationship with specific mother-targeted Gardasil advertising. Their “Tell Someone” campaign encourages mothers to “help [their daughters] avoid cervical cancer in the future.” One HPV vaccine brochure from this campaign has a picture of a cell phone with “1 Message” written on the screen. Above, the text reads: “Mom, you’d want to know who she’s talking to all day… wouldn’t you want information that could help her avoid cervical cancer in the future?” Another brochure features a tube of hot pink lipstick: “You’d tell her she has lipstick on her teeth,” written in bold, “So why wouldn’t you tell her about a virus that can cause cancer?” Another pictures the remnants of a meal: “You’d tell her those jeans are too tight. So why wouldn’t you tell her cervical cancer is caused by certain types of a common virus, HPV?” Cell phones, lipstick, and tight jeans are presented as common signs mothers and daughters can identify, and HPV is linked with them – an attempt to construct conversation about HPV as normalized in the mother daughter relationship as well. Cell phone, lipstick, and tight jeans are all presented as female gendered concerns, concerns which must be regulated by adult women. Adult women, it also would seem, are responsible for regulating the health of girls’ cervixes. In case mothers did not get the message the brochure continues with a draw on fear of cancer: “As a mom, there’s nothing more important to you than your daughter’s health and wellbeing. And it’s not easy to think of her having cervical cancer.”

[24] By identifying causal factors (whether real or not), a woman can distance herself from the fear of cancer. “I won’t get cancer,” she thinks, “because I protected myself, I was vaccinated.” Anagnostopoulos and Spanea found healthy women to be more apt to cite environmental factors as causal for breast cancer, as opposed to developing the disease by chance (2004). It is not a leap in logic to carry that argument further: “She got cancer because she did not protect herself. She must have done something wrong to be exposed, therefore she is at fault.”  A value judgment is crafted against the cervical cancer patient, and the patient becomes an “other.” One study of parents of adolescent girls found that most parents (96%) rated the severity of cervical cancer high, indicating significant fear of the disease itself (Reiter et al. 2009). Parents in this study reported a lower likelihood that their vaccinated daughter would develop the disease, however. Thus the fear of cancer was quelled by the parents’ action: having their daughters vaccinated and thus protecting their daughters’ cervixes.

[25] Ultimately, women are personally responsible for HPV. This focus on personal responsibility in cancer prevention may unintentionally result in an increased stigma for cervical cancer patients. Studies of lung cancer demonstrate that as most lung cancer is preventable (i.e. by not smoking) lung cancer patients receive less social support than other cancer patients (Raleigh 2010). Lung cancer patients also state that they believe they receive a lower standard of care due to the stigma of smoking, whether smoking was the primary cause of their lung cancer or not. Not all cervical cancer is vaccine preventable. One wonders if cervical cancer patients will experience stigma nonetheless, if women will be blamed for “catching” cancer.

Oppositional Discourse

[26] Not all HPV vaccine discourse encourages the vaccine; indeed some religious fundamentalists and vaccine safety organizations decry HPV vaccination.

[27] As noted above, the historical collective representation of illness has been that illness is a punishment for some wrong doing or character flaw. Cancer (illness) was viewed as a punishment from God for sins (sex). This representation, while shifted somewhat with discoveries of disease epidemiology and pathology, has not quickly faded from collective consciousness and is a claim staking point of some religious conservatives. Google the words “STD as a punishment from God” and more than 246,000 results will be returned. As one blogger put it, “A healthy husband and wife can live together all their lives, enjoying sex with each other for many decades, and not get a venereal disease. This is because Venereal [sic] diseases are rife among many immoral people, a kind of natural curse.”

[28] One study found that religiosity significantly impacted parents’ intention to vaccinate their daughters against HPV (Barnack et al. 2010). Religiosity – defined as frequency of attendance of religious services – was negatively correlated with intent to vaccinate against HPV, a finding which suggests that religious beliefs influence vaccination decision-making.

[29] Another group opposed to HPV vaccine is the vaccine safety movement. Not long after the licensing of the vaccine, Texas Governor Rick Perry signed an executive order mandating the vaccine for girls’ school attendance for all 11- and 12-year olds entering the sixth grade (Perry 2007). This was the first state attempt to mandate the vaccine. Perry’s action by-passed the Texas legislature and the usual debating process (Blumenthal 2007). He was accused of being influenced in this decision by his financial ties to Merck – Gardisil’s parent company – as Merck contributed to Perry’s 2006 campaign for governor (Burnt Orange Report 2007).

[30] Historically, school-related vaccine mandates have been used to boost vaccine uptake in the population. There is no (or should be no) risk of person-to-person spread of genital HPV within a school setting. Mandates are a public health mechanism to employ large-scale disease protection. However, this sort of disease control is only effective when herd immunity – immunity throughout the population – is achieved. With the limited target group for HPV vaccination (young women), herd immunity will not be reached.

[31] Throughout the US today parents are required to provide proof of vaccination against a number of communicable diseases in order for their children to attend school. In addition, some states have vaccination requirements for daycare attendance and college admission (Salmon et al. 2005). All 50 states currently allow for medical exemptions from childhood immunizations (for children in which vaccination is medically contraindicated), and all but Mississippi and West Virginia allow for religious exemptions. In recent years there has been a push from vaccine objector groups to widen the criteria for exemptions to include philosophical objections. Philosophical exemptions allow for parents to exempt their children from compulsory immunization requirements based on any secular conviction against the practice (Salmon et al. 2005). Legislation allowing such exemptions was first introduced in several states in 1999. At the time of the writing of this paper twenty states allow for philosophical exemptions: Arkansas, Arizona, California, Colorado, Idaho, Louisiana, Maine, Michigan, Minnesota, New Mexico, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, Texas, Utah, Vermont, Washington, and Wisconsin.

[32] Activities of today’s vaccine objector movement seem to be having an impact. In recent years the rates of parents claiming non-medical vaccination exemptions for their children has increased (Salmon et al. 2005). Allowing for philosophical exemptions increased the total percentage of exempt children in Colorado from 1.25% in 1987 to 2.05% in 1998 (Feiken et al. 2000). Some research has demonstrated that as many as 25% of parents question the benefits of immunizing their children (Gellin et al. 2000; Offit et al. 2002). A study conducted by the American Academy of Pediatrics (2001) found that 70% of pediatricians have had parents refuse an immunization for their child(ren) and that 4% of pediatricians have refused an immunization for their own child(ren).

[33] Texas Governor Perry’s actions would have made the HPV vaccine the only vaccine to be mandated for only one sex, legally coercing girls to take the vaccine. It raised the furor of antivaccination groups. The National Vaccine Information Center, a key organization against vaccine mandates in the US, cited concerns over vaccine safety, following historical vaccination protest. One press release states: “Gardasil’s safety appears to have been studied in fewer than 2000 girls aged 9 to 15 years and it is unclear how long they were followed up. VAERS [the Vaccine Adverse Events Reporting System] is now receiving reports of loss of consciousness, seizures, arthritis, and other neurological problems in young girls who have received the shot” (NVIC 2007). Vaccine safety websites draw on parental emotion with stories of children injured by vaccines, the implication being that parents who choose to vaccinate are at fault should their children be injured.

Manipulation

[34] Women are pulled in two directions, with pressure from some groups to seek vaccination and pressure from other groups to forgo the shot.  As noted by Han et al. (2009), this diversity of health messages may lead to a sense of ambiguity in the public realm. Each faction pushes its own agenda – whether the goal of preventing cervical cancer or of controlling the sexuality of young women.

[35] In analysis of HPV vaccine discourse, I find van Dijk’s thesis on manipulation (2006) a valuable tool. Throughout HPV vaccine discourse are threads of manipulation. Pharmaceutical companies are vested in widespread vaccination as it equates to sales. Indeed, the cost of the vaccine is high and government mandates ensure sales, as do governmental programs such as Vaccines for Children. HPV information is distorted and biased of depending on the standpoint of the author. Key points are missing, making it difficult to argue the public is fully informed. Most HPV infection clears without developing illness, and early treatment of illness is often successful, yet the discourse is filled with threats of cancer, consciously drawing on fears of cancer to incite women to take up the vaccine. The route of transmission is veiled to remove stigma/moral condemnation of sexual behavior. The role of men is negated in transmission. Discussion of anal and penile cancers are notably absent, as are discussions about genital warts. This hyper-focus excludes many variables. From the camp of those opposed to the vaccine, citations of vaccine risk and threats of spiritual condemnation dominate.

[36] On the surface at issue is a vaccine, a medical intervention. As I have demonstrated HPV vaccine has its own narrative, a mythology that draws on norms and values about sex, about government control, and about profit. The threads of discourse pull on strong emotions – fears of cancer, control of female sexual behavior, the need to protect children from harm. The voices that permeate are those of heavily-funded marketing campaigns, physicians in their white coats, ministers in their pulpits, and the government. Government control attempts to move beyond manipulation to coercion – forcing girls to be vaccinated or forgo school attendance. Likewise, religious control invokes the power of God – for believers, the ultimate authority.

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