Responsibilization and Sexual Stigma Under Austerity: Surveying Public Support for Government-Funded PrEP in England

Public opinion on social programs is not only integral to the success of the policies behind them, but also shapes citizens’ perceptions of government responsiveness and accountability; public opinion is thereby fundamental for the legitimacy of the welfare state itself (Bendz, 2017; Burstein, 1998; He, 2018; Judge & Solomon, 1993; Soss, 1999). But the actual impact of public opinion on policymaking is unclear. Some estimate that it affects policy three quarters of the time it is measured, with substantial effect at least a third of the time (Burstein, 2003). The impact of public opinion on policy can be contingent on various factors: public awareness; the clarity and size of attitude shifts; issue salience and newness; and the policy process as mediated by the institutional structure of government (Burstein, 1998, 2003; Jacobs & Shapiro, 1994; Page & Shapiro, 1983; Raven, Achterberg, Van der Veen, & Yerkes, 2010). To complicate matters further, policymakers do not always have a good understanding of public opinion. As such, its indirect effects—how policymakers anticipate public opinion—are especially strong and factor most into how policy is crafted (Page & Shapiro, 1983; Whiteley, 1981).

On health policy, governments can be especially sensitive to public opinion (Jacobs, 1992; Jacobs & Shapiro, 1994; Judge & Hampson, 1980). When issues are particularly controversial within the general public, crisis-era policies have been retained to avoid public backlash even when shown to be scientifically outdated. For instance, decades after high-profile HIV-contaminated blood donation scandals, sexually active MSM (men who have sex with men) still face bans on donating blood despite the emergence of advanced blood screening technology (Galarneau, 2010). Where healthcare is publicly funded, like in Britain, the views of the public are even more important to consider (Judge & Solomon, 1993). Active public consultation-seeking by the NHS and the popularity of the institution has meant that public opinion about healthcare is an increasingly integral, potent force in policy debates and policymaking (Harrison & Mort, 1998; Jacobs, 1992; Judge & Solomon, 1993; Whiteley, 1981).

On policies related to sexual health, public opinion becomes focused less on institutions and more on individuals. With increased emphasis on preventative health education, the locus of responsibility for sexual health is placed heavily on the individual, a shift corresponding to the rise of preventative medicine more broadly (Pill & Stott, 1982) and in the context of the shrinking welfare state in particular. For diseases like HIV especially, individuals are believed to be responsible for protecting themselves from contracting it (Adam, 2005, 2016), and those with HIV expected to manage it individually (Race, 2001). Such attitudes of responsibilization are especially prominent where sexuality is seen in normative terms and in relation to behaviors perceived to be morally unacceptable (Calabrese et al., 2016; Michael et al., 1998). As with MSM “blood bans,” strong moralizing on issues of sexual behavior is common in public health policymaking (Michael et al., 1998) and can impede the development of more effective sexual health policies. Concerns that medical advances can enable sexual promiscuity parallel similar concerns raised over HAART (highly active anti-retroviral therapy) in the mid-1990s for HIV/AIDS (Race, 2015) and oral contraceptive in the 1960s (Auerbach & Hoppe, 2015).

Responsibilization attitudes, frequently informed by homophobia and tropes of hypersexualization, are particularly prominent when sexual minorities are seen as engaging in “risky” practices. Following HIV/AIDS outbreaks globally, for instance, HIV-positive gay men were seen as being “at fault” for contracting the virus through “hedonistic” sexual behavior (Sabatier, 1988; Shilts, 1987). Cognizant of such attitudes in the United States, Senate policymakers during the epidemic omitted any mention of homosexuality in AIDS-related social benefits policies—allowing the policies to pass without public outcry, and providing political face for senators in support of such policies (Schroedel & Jordan, 1998).

In contexts like Britain, populist political discourses of “fairness” and “deservedness” (e.g., “the deserving poor”) underlying austerity measures have also influenced public opinion. In particular, they heighten notions of “unacceptable” risk, self-indulgence (see Wilson, 2007), and therefore responsibilization on the part of marginalized groups (Cain, 2016; Hoggett et al., 2013; Roy & Buchanan, 2016). Under such conditions, we would expect perceptions of risky sexual behavior—and by association, sexual identities—to matter a great deal in public opinion of sexual health policy. On the issue of HIV, these discourses dictate that the cost of prevention should be the individual’s responsibility, and not the taxpayers’: if one cannot afford PrEP, cheaper preventative measures like condoms should be used (or one should simply abstain from sex altogether).

Unlike many high-income countries (and even some low- and middle-income countries), pre-exposure prophylaxis (PrEP) is not available to the general public across all devolved regions in Britain. Despite a nationwide study of 544 high-risk gay men that demonstrated the drug’s high clinical effectiveness at preventing HIV (McCormack et al., 2015)—and the conclusion of researchers that full availability of the drug could save billions of pounds from the lifetime treatment costs for new HIV-infected individuals (Cambiano et al., 2018)—in June 2016, NHSE decided against providing PrEP, claiming in part that it did not have the legal power to commission the drug as a prevention strategy. The National AIDS Trust challenged the NHSE’s decision, winning its case in the High Court in August 2016 and subsequently in the Court of Appeal in November 2016 (following the NHSE’s appeal of the initial High Court decision). However, unlike their counterparts in Wales and Scotland and despite the ruling, NHSE has yet to make the drug freely available across England.

Policy decisions like this do not occur in a vacuum and must be examined within the current political and economic context. Although Britons continue to strongly revere the NHS, arguments over its funding, privatization, treatment rationing, and doctor salaries, have become increasingly divisive (Campbell, 2012). Debates during the EU referendum demonstrate how public reverence for the NHS as a British institution has taken on a protectionist quality (Gayle, 2017; Moore & Ramsay, 2017); promises to redirect to the NHS £350 million bound for the EU per week were central to the Leave campaign’s victory in the June 2016 vote (Simpkin & Mossialos, 2017).¹ While the government aims to engage in rational, cost-effective policymaking, it is also clearly sensitive to public opinion (Soroka & Lim, 2003).

Given the media response after the High Court overruled the NHSE in August 2016, concerns of a public backlash seemed warranted: the front page of The Daily Mail (Britain’s most read newsbrand) derided the court for funding a “lifestyle drug” and “promiscuity pill,” while a national television news program led its coverage with a story on “Free £20M drugs for gays who won’t use condoms” (Duffy, 2016). The media narrative suggested that tax contributions used to cover the costs of PrEP are tantamount to paying for gay men to have unprotected sex—essentially, taxpayer-funding of “irresponsible” lifestyles (Cairns, 2016). The decision was framed in zero-sum terms: giving PrEP to gay men, who are presumably less deserving because they are victims of their own “lifestyle” choices, takes away needed drugs from those who are not: The Daily Mail exclaimed “NHS told to give out £5,000-a-year lifestyle drug to prevent HIV—as vital cataract survey is rationed” and suggested that children with cystic fibrosis would go without treatment (Ridley, 2016). A study of media coverage in the six most widely read newsbrands (both online and print) from March to December 2016 found that 79% of PrEP-related articles were published by conservative leaning brands (Daily Mail, Times, Telegraph, Sun), whereas liberal leaning Guardian and Mirror published just 13% and 8%, respectively. Thematic analyses of the coverage found differences that corresponded with political leanings, as well: stories on PrEP in conservative newsbrands were more likely to mention “sexual decision making” and the financial implications for other patient groups than those in liberal outlets (Procter, 2017).

In its own response to the ruling, NHSE suggested that some treatment rationing would have to occur to accommodate the demands of providing PrEP widely (Duffy, 2016).

This media narrative in England reflects a broader trend of PrEP users stigmatized as irresponsible “Truvada whores” (a reference to the brand name of the drugs used for PrEP) (Auerbach & Hoppe, 2015; Duran, 2012; Race, 2015). Even some within gay and HIV communities suggest PrEP is an overly expensive excuse for continuing to engage in “irresponsible” risky sexual behavior (e.g., Duran, 2012; Weinmeyer, 2014). On the provider side, a survey of healthcare practitioners in the US and Canada further found that while support for providing PrEP is generally high, there are still mixed feelings about the drug, with some expressing “moral issues” with it and others suggesting medicine in general should not be used to artificially reverse “bad” behaviors (Karris et al., 2014).

Little is known about how general publics in England (or anywhere in the world) perceive PrEP and if they support the public provision of it. Extant literature primarily focuses on efficacy and adherence of the drug (Baeten et al., 2012; Grant et al., 2010). Insofar as studies examine attitudes toward PrEP, most have focused on perceptions among providers and beneficiaries (e.g., Grov & Kumar, 2018; Rocha et al., 2014; Young, Li, & McDaid, 2013; Wheelock et al., 2012). Only one study to date has examined general perceptions: a survey experiment of 154 respondents in the US found that anti-Black and anti-gay attitudes decreased support for the provision of PrEP (Calabrese et al., 2016).

In this paper, the NHSE decision on PrEP functions as a most likely case (Gerring, 2007); the political, economic, and media conditions surrounding the decision were such that public opinion on government provision of the drug would be most likely sensitive to responsibilization narratives and sexual stigma. Given low general public knowledge about PrEP, we also expect that the public would most likely turn to the media for cues about opinion formation, thereby increasing their exposure to predominately negative media narratives (McCombs, 2002).

The study was designed to examine how public support for government-provisioned PrEP might differ across various specific target populations. We are interested firstly in how changing the target population affects general support for government provision of PrEP. Indeed, public support for policies might depend on whether target groups are viewed more positively or negatively in general (Schneider & Ingram, 1993); when the policies are seen as targeting a particularly narrow and relatively unpopular subsection of the population they enjoy less public support (Skocpol, 1991; Whiteley, 1981). During the AIDS epidemic, for example, concern from policymakers and the general public grew when HIV was seen as a virus that could attack “innocent victims,” such as young hemophiliacs, rather than socially transgressive, “hedonistic” gay men (Shilts, 1987, p. 225). Similarly, building upon research in the US (Calabrese et al., 2016), we expect support for funding the drug for other “outgroups” (including immigrants) will be lower than for the general population and those whose stigmatized behavior is not noted (such as pregnant women). As such, we pose our first research question: How does framing the use and testing of a drug around specific populations affect general support for that drug? (RQ1).

As evident in related cases of sexual moralizing in public opinion and policymaking, support for government funding of PrEP may further vary depending on the degree to which those seen as primary beneficiaries of the drug are negatively perceived on the basis of presumed sexual behavior—and thus, responsibilized (Herek, 2004; Lingiardi, Baiocco, & Nardelli, 2012; Pistella, Tanzilli, Loverno, Lingiardi, & Baiocco, 2018). Here, we are concerned with sexual stigma, which we define as negative attitudes toward any non-heteronormative behavior, identity, or community—that is, those which do not subscribe to the heteronormative ideal of heterosexual monogamous coupledom. We are interested not only in beneficiary identity but also, and especially, how sexual behaviors being made salient—and the degree to which they are stigmatized, particularly when associated with certain group identities—affects public support of PrEP. In the context of PrEP, the public, media, and NHSE have generally characterized gay men and MSM who do not consistently use condoms as “high risk”—and that those who admit engaging in such behavior and express interest in PrEP are somehow more irresponsible (see Race, 2015).

There is reason to assume, too, that most gay men are seen as the “over-sexed other” even without specific evidence about individual behavior (Wilson, 2007), and that those using this drug will be automatically viewed as hypersexualized irrespective of their actual behavior (Calabrese et al., 2014; Race, Lea, Murphy, & Pienaar, 2016). This suggests a pair of separate hypotheses. First, we hypothesize that general support for the provision of PrEP will decrease when perceived beneficiaries are gay (H1)—this is an implied stigma, separate from that of their actual behavior. Second, the greater PrEP users are seen as “irresponsible” and engaging in “high-risk” behavior, the less likely respondents are to support funding (H2). This should be true of anyone engaging in risky behaviors, regardless of their sexual orientation.

Moreover, we are interested not just in public support of the NHS funding PrEP in general, but also in how support may differ for various specific potential beneficiaries of the drug (RQ2)—that is, are respondents more or less willing to support funding PrEP for different types of people? This should also be affected by the experimental conditions: the most obvious outcome being that people should support the drug funded for the populations for which they think it has been tested—that is, for the populations to which they are exposed in their experimental condition (H3). For instance, people who are exposed to a condition highlighting testing of the drug among pregnant women might show more support for funding the drug for pregnant women.

This paper draws upon an original survey of 738 respondents in England conducted in September 2016, which represents the largest survey ever conducted on general public attitudes about PrEP in the country. Participants were recruited through Prolific, a service that matches researchers with people willing to do small tasks online (like taking surveys) for small amounts of money. The panel was limited to participants who were over the age of 18, had at least a 90% approval rating, and at least 500 jobs completed on the platform. Such requirements are recommended as best practice when dealing with online samples like those of Prolific or Mechanical Turk (Peer, Vosgerau, & Acquisti, 2014).

The survey was designed to answer the research questions outlined above, with a focus on the survey experiment element described below. Participants gave informed consent, and were then asked questions about PrEP (awareness of the drug, NHS funding for different populations), diseases other than HIV (Human Papilloma Virus and type 2 diabetes), opinions on political issues (LGBT issues, taxes, Brexit), and demographics.

Within this, we imbedded a survey experiment, similar to those previously used to explore attitudes on PrEP by other scholars in the US (Calabrese et al., 2016) and by our comparative research public opinion transgender policies in the UK and US (Bode & Hildebrandt, 2018). The only difference for each condition was what group PrEP was described as targeting in a clinical trial. Specifically, participants were told, “PrEP is a drug used to protect against exposure to the HIV virus. In a recent study of approximately 500 [GROUP INSERTED HERE], this drug was shown to be almost entirely effective at preventing HIV infection when used as directed. Based on this, would you approve or disapprove of the NHS covering the costs of PrEP?” The groups shown were “people” (control), “gay men,” “gay men who have frequent sex with multiple partners,” “high risk gay men,” “people who have frequent sex with multiple partners,” “pregnant women,” and “non-UK born people.”

We measure biases toward perceived beneficiary groups in two ways. First, as described above, respondents were randomly assigned to one of seven treatment groups: people [most general, with no other descriptor] (N = 115), gay men (N = 123), people who have frequent sex with multiple partners (N = 105), gay men who have frequent sex with multiple partners (N = 90), high-risk gay men (N = 94), non-UK born people (N = 99), and pregnant women (N = 101). Based upon the expectation that there would be moralizing around sex and therefore degrees of negative bias depending on the sexual behavior—and depending on whether the sexual behavior is associated with gay men versus other groups—groups mentioning different sexual behaviors were included. Different language was used to describe gay men, and their sexual activity, because of an expectation that this information could decrease support for expenditures to benefit them. Similarly, due to an expected anti-immigrant bias, we included a treatment group of non-UK born people. On the other hand, we included pregnant women to test if they, and their unborn children receive more public support for PrEP provision. PrEP support is measured on a scale of 1 (strongly disapprove) to 5 (strongly approve), with a mean of 3.86 (standard deviation = 1.04).

The second measure of beneficiary bias comes later in the survey, where we present all respondents with a similar list of potential beneficiary groups and ask them to rate approval of NHS funding for each group on a 5-point Likert scale. Because we were not looking for changes in framing or language, we include a slightly different list of beneficiaries of three types: first, we include groups identified by health authorities as most at risk for contracting HIV: gay men, drug users, and sex workers (CDC, 2017; NHS, 2017); second, we include groups which might experience positive bias (sympathy) based on the expectation that they might be identified by the public as “innocent” populations: pregnant women and adolescents (Rochkind, DuPont, & Ott, 2009; EKOS, 2012; Shilts, 1987); finally, we include an outgroup specific to the British research context: non-UK born people. Support for funding varies by target population (see Table 2), with a mean of 3.71 (standard deviation = 0.95) on a scale of 1 to 5.