This book explores the new applications of established theories or adapts theoretical approaches in order to illuminate behaviour in the field of food. It focuses on social processes at the downstream end of the food chain, processes of distribution and consumption. The book reviews the existing disciplinary approaches to understanding judgements about food taste. It suggests that the quality 'halal' is the result of a social and economic consensus between the different generations and cultures of migrant Muslims as distinct from the non-Muslim majority. Food quality is to be viewed in terms of emergent cognitive paradigms sustained within food product networks that encompass a wide range of social actors with a wide variety of intermediaries, professional and governmental. The creation of the Food Standards Agency (FSA) and the European Food Safety Authority (EFSA) occurred at a juncture when perceptions of policy failure were acknowledged at United Kingdom and European Union governmental levels. The book presents a case study of retailer-led food governance in the UK to examine how different 'quality logics' actually collide in the competitive world of food consumption and production. It argues that concerns around food safety were provoked by the emergence of a new food aesthetic based on 'relationalism' and 'embeddedness'. The book also argues that the study of the arguments and discourses deployed to criticise or otherwise qualify consumption is important to the political morality of consumption.
Tensions around the value generated by the complicated nexus of private, public and industry arrangements of large-scale genomic sequencing initiatives can also be found in the wider political economy of targeted therapies. Personalised cancer drugs promise cures and economic growth. But their expense presents a problem for healthcare providers and patients alike. Recent reports suggest that in one of the largest markets, the USA, spending on cancer drugs in the genomic era has increased dramatically – rising from $26 billion in 2012 to more than $45 billion in 2016, with targeted therapies accounting for 60 per cent of this increase (Bekelman and Joffe 2018). Others report that prices for targeted cancer therapies can be as much as $350,000 per patient per year (Tiriveedhi 2018: 36, quoting Gavan et al. 2018: 1). In insurance-based healthcare systems such as that in the USA, where not everyone is covered for these kinds of treatments, this is plunging families into debt. Authors have written about the ‘financial toxicity’ that accompanies the chemical toxicity of cancer drugs, with the American Centers for Disease Control and Prevention reporting that one in three US citizens experience financial difficulties due to medical care, with the greatest burden falling on cancer patients who face a range of so-called ‘out of pocket expenses’ for cancer; for example, it has been reported that 13 per cent of non-elderly patients spend over 20 per cent of their income on out-of-pocket expenses (Zafar 2015: 370).
For many cancer patients and their families, this is a price worth paying. Targeted drugs are also prized by the genomic vanguard (Hilgartner 2017) that we discussed in the previous chapter, who argue that personalisation will grow the economy and save the health service money as drugs are targeted more effectively. But even in established and well-regarded public healthcare systems such as the NHS, it is difficult to meet these ballooning costs. ‘Buying in’ to this promissory future involves a costly ‘embrace’ of biomedicine. As Good notes,
While the world's dominant economies invest private and public monies in the production of biotechnology and aggressively seek to integrate these advances into clinical practice – thereby reaping financial as well as scientific returns on [often tax-funded] capital investments – all societies are confronted with difficult questions about rationing biomedical interventions assumed central to competent clinical medicine. (2001: 407)
In the UK this is made more complex by different decision-making arrangements across England, Wales and Scotland. NICE, the body responsible for deciding what treatments will be made available to patients in England, operates a Cancer Drugs Fund, a managed access scheme which tries to ensure that patients get early access to promising treatments and to encourage ‘responsible pricing’ by pharmaceutical companies to ensure value for money for the public purse. 1 The Scottish Medicines Consortium advises NHS Scotland on the clinical merits and cost-effectiveness of new medicines. In many ways this arrangement reflects public opinion on the need to try to manage cancer drug costs in the same way as treatments for other conditions. 2 However, bodies making funding decisions are also heavily criticised by cancer patients and their supporters when they are faced with a decision not to fund hoped-for treatments. There are numerous stories in the media of patients and families affected by these kinds of decisions criticising ‘NHS bureaucrats’ and the ‘postcode lottery’. As we write, one such story has hit the headlines. This is the case of an NHS worker with advanced cervical cancer who lives in Wales. She has been denied access to Avastin, a targeted therapy, by the All-Wales Medicines Strategy Group, but if she lived in England she would be able to access the drug via the Cancer Drugs Fund. 3
Aside from these difficulties about the fairness and consistency of decision making across the UK, funding decisions are also beset by a range of problems regarding how to evaluate and establish what counts as an effective treatment. There is no shortage of economic formulae designed to work out what should be funded based on cost and clinical effectiveness. But this is not an area where formulae are enough to satisfy the complex needs of patients, advocates and practitioners. So disputes abound about how to calculate benefit and what kinds of evidence count in this process. Of course, such disagreements are common across decision making around tests and treatments for an array of different diseases, not just cancer. There is also a long history of drugs being expensive and experimental in cancer care. But personalised cancer medicines make this situation even more complicated and difficult for three main reasons. First, the idea of personalisation brings with it a sense of individual patients’ entitlement to new and experimental treatments; not being treated as one of the ‘herd’ but as special and deserving of the opportunity to take the risk. This increases patient pressure on the decision-making body. Second, these therapies are, by their very nature, experimental, and as such there is limited evidence of effectiveness. The impetus to be permissive rather than restrictive is part of a wider experimental ethos perpetuated through major charitable institutions that fund cancer research – institutions that are embedded in the fabrics of our lives via a plethora of fundraising initiatives and charitable giving. This further increases pressure on decision makers. Third, and perhaps most importantly, personalised medicines are most effective for particular subgroups of patients, depending on their genomic profile, and yet evidence of this benefit can be difficult to generate. The way in which the effectiveness of cancer therapies is evaluated tends to rely on a lot of evidence of benefit across larger or mixed groups of patients. Gathering the right kind of evidence to satisfy the requirements of decision-making bodies is difficult because it means having to work out, in advance, what kinds of patients might benefit more than others and to put trials and studies into place to ensure that the drugs can be given consistently and safely, and monitored properly, to amass sufficient evidence. Patient pathways and trial arrangements are complex and cancers can progress quickly, making these kinds of studies difficult to conduct. Cancer is a complex and evolving disease, so the era of personalised medicine is not just about finding a one-off ‘wonder drug’ that makes all the difference. Instead, cancer therapies are offered in combination, and these combinations shift over time as the cancer evolves. This makes the benefits of one particular drug even more difficult to establish, putting researchers and funding decision makers in a kind of Catch-22 situation: evidence of benefit is required but is difficult to establish because treatments are not yet permitted.
Behind the headlines about the revolutionary potential of personalised cancer medicines to cure cancer, there are complex and difficult stories of the benefits, and drawbacks, of targeted therapies. These therapies can give patients a few extra precious months or years of life, but is that enough to justify their high cost to the NHS? As Bekelman and Joffe recently discussed in the Journal of the American Medical Association, cancer drugs rarely show substantial improvements in life expectancy. They give the example of neratinib, a drug for patients with early-stage breast cancer, which has been shown to improve ‘invasive disease-free survival’ by 2 per cent. The monthly cost of this drug is $10,500 (Bekelman and Joffe 2018: 2167). For experts and citizens this can be too high a price to pay for marginal gain, but other patients and relatives contest these kinds of calculations, pointing to other evidence they have gathered from their own experiences and those of fellow cancer patients, which shows that they are living longer and better lives because of these kinds of drugs. From the ‘exceptional responders’ we sometimes see in the media, to their own experiences and discussions with patients and practitioners online and in person, cancer patients and their advocates can draw on this more diffuse, informal evidence to build a sense that the bureaucratic calculus of ‘benefit’ is unimaginative, perhaps even callous.
Another important feature of this prevailing sense of ambivalence, disappointment and frustration around the cost and availability of personalised cancer medicines is criticism of the predatory pricing and high profits of pharmaceutical companies. Concerns about the spiralling costs of precision medicine have been expressed in a range of quarters. In the journal Nature Biotechnology, Schellekens et al. criticise what they see as an ‘outmoded’ process of drug regulation, but they also state that ‘the main contributor to soaring costs is innovation in a market that is driven by what is offered, rather than by medical need’ (Schellekens et al. 2017: 507). Cancer charities also become involved in lobbying around pricing strategy. For example, the CRUK website ran a story about pricing, quoting Professor Richard Sullivan, director of the Institute of Cancer Policy at King's College London: ‘Pricing is out of hand … The cost basis of what's happening to medicines is very elastic – the prices just keep going up. It's not about value but what the market can bear.’ 4
Although it is widely acknowledged that the cost to companies of developing targeted therapies is high, concerns have been raised among US practitioners that big pharma is not actually spending as much of its profits on research and development as is sometimes claimed, for example by spending on marketing rather than research. 5 NICE and other government bodies, as well as economists and other academics involved in the review and evaluation of drug pricing, have had to be cautious about how they manage this disgruntlement, given how embedded these companies are in government plans for the life sciences economy as a means of boosting UK wealth. However, resistance to the high costs of precision medicine does emerge in negotiations around drug approvals, as part of a wider set of lobbying around access and pricing by patients and advocates. For example, in the face of considerable pressure from cancer charities and patient advocates, NICE negotiated over a number of years with Roche, the manufacturer of a cancer drug called Kadcyla for advanced breast cancer, before granting approval; this reportedly involved an undisclosed discount from the £90,000 ($115,000) per patient cost. 6
In this chapter we explore what it means to be a cancer patient or advocate caught up in these systems of pricing, evaluation and access. How do patients and their supporters navigate access to targeted drugs that might be inaccessible via the NHS? What kinds of alliances and work does this involve? How does it feel to be told you can only access a treatment on which you have pinned your hopes by paying, or to find that you cannot benefit from this treatment despite having raised significant amounts of money from family and friends to do just that?
Cancer patients, many of whom are younger patients with a late diagnosis, together with their advocates, doctors and campaigners are increasingly seeking access to personalised cancer medicine via a range of routes. As we have already discussed, these include companies’ compassionate use schemes and research trials. But it can also involve self- and crowdfunding, alongside appeals against Clinical Commissioning Group decisions and more public challenges to company pricing structures. These activities have blossomed online in the genomic era, among new and established groups of cancer patients and supporters, some of whom have formed alliances around types or stages of cancers, treatments and/or locale in their efforts to improve access to targeted chemotherapies.
Accessing and advocating for experimental therapies involves new biosocial arrangements. These bring patients and advocates together to campaign collectively and build a shared identity around cancer subtypes where experimental drugs offer hope but are not routinely available as part of NHS care. Survivorship as craft (Frank 2003) involves telling one's story and cultivating communities and responsibilities for fellow survivors. These activities also involve new kinds of expertise in advocacy and fundraising, extending entrepreneurial patienthood into the digital world of crowdfunding and profile raising. Digital media platforms are increasingly important means by which patients are active and engaged in these collective and individual battles (Lupton 2014; see also Vicari and Cappai 2016). These form part of what Zuboff (2019) has called ‘surveillance capitalism’, where profit is derived from tracking, predicting and conditioning user behaviours, often without their knowledge. Cancer patients are actively involved in these platforms as they seek and offer support and advocacy around living with cancer, participating in research and accessing information, tests, treatments and care (Ziebland and Wyke 2012; Ross et al. 2019). Western-centric tropes of survivorship, prioritising enablement, self-responsibility and cheerfulness are common, notably in breast cancer forums (Orgad 2005). As Petersen et al. (2019) argue, there is also growing emphasis in patient campaigning online, where patients work with science and business on profile raising and fundraising. These activities are amplified and monetised by traditional and digital media which ‘align with a consumer-driven model of digital patient activism’ (Petersen et al. 2019: 489). Facebook and other social media platforms such as Instagram are where patients become involved in what Gerlitz and Helmond have called the ‘like economy’, where ‘like buttons enable multiple data flows between various actors, contributing to a simultaneous de- and re-centralisation of the web’ (Gerlitz and Helmond 2013: 1248).
We explore these activities by analysing 15 patients’ social media and press coverage and eight interviews with a range of mainly non-NHS patients and their advocates, including patients seeking or self-funding targeted cancer treatments that have been refused or not provided as part of standard NHS care. The interviews were carried out between September 2018 and March 2019. They included patients and their supporters crowdfunding for these treatments using online platforms, campaigners advocating for access and a small number of patients who had gone public about their experiences of self-funding treatments. We also included patients who have accessed private medicine via their medical insurance schemes, typically provided as part of their employment benefits, some of whom avoid speaking about this in public.
These new arrangements transcend categories such as industry-backed ‘patient groups’ and ‘adversarial consumerism’ (Williams et al. 2011) and rework theories of biosociality which foreground active partnerships between rare-disease communities and healthcare providers. Instead, following Frank (2003) we argue that these practices of private patienthood are creating and breaking down solidarities in novel and important ways. We highlight digital platforms as a key aspect of these processes, as the sites through which patients and their advocates join each other alongside charities, pharmaceutical companies, universities and healthcare institutions in constituting these new kinds of patienthood. But rather than being wholly benign, these platforms are part of the process of value creation, and are themselves extracting yet more value from patient behaviour now rendered digital. Crucially, we consider how these processes work via appeals to and accounts of the sorts of futures these patients and supporters craft for themselves and others as part of these new social and economic formations, as they try to live well in prognosis.
Private healthcare as right and wrong: personal futures and the future of the NHS
Private cancer medicine in the UK is a significant business. As pressure on NHS funding increases and the regulatory hurdles outlined above multiply, NHS cancer patients are increasingly faced with restrictions on the kinds of drugs they might seek as part of their care. For many NHS patients, this is not an issue – they accept the treatments on offer or join trials to access more experimental therapies. For a growing group of patients, however, private medicine is their main option.
Going private is not necessarily to the exclusion of NHS care, but often patched together with NHS services, typically when patients are able to access private medicine through a workplace insurance scheme. As this patient advocate for ovarian cancer, Sara, explains, this does not necessarily involve speedier access to tests, results and treatment:
How did you go about getting a genetic test?
So I … think I raised it with my oncologist and … requested that I was referred for it. And he … was keen to make that referral. But I was seeing my oncologist privately … [I] think genetic testing, that was through the NHS … I think there was probably some delay because perhaps … I wasn't having my treatment at the time on the NHS and then there were some complications with them having an old address on file … So it probably took about 12 months … from me initiating the conversation to actually having the test, which was a little bit frustrating. But … I got there in the end and I know there's plenty of people who want genetic testing and struggle … to get it.
On the other hand, private medicine did bring Sara privileged access to certain therapies, such as Avastin, a biological therapy which has shown some success for particular groups of cancer patients such as those with a BRAF mutation:
because I was private, I was, I was having my surgery and my treatment privately, I was automatically eligible for Avastin.
Did you go private because it was covered by your work?
Yeah, it was … I initially went to an out of hours doctor based at a local NHS hospital and I was admitted there and had a lot of my initial tests and diagnosis there. And then my follow-up appointment was with the surgeon of that hospital, and when he said the next step is to have a hysterectomy, he said, ‘I can do it in three weeks on the NHS or I can do it in a week privately.’ And I had the benefit of private cover – so it'd be the same individual doing it, so it wasn't as if I was getting any more – anybody any more skilled or less skilled, but at the time my reaction to it was I just want whatever is in there out of me as soon as, and it felt – because at the time one of the symptoms, I was quite bloated and it seemed to be getting – my stomach seemed to be getting bigger with like fluid, it was almost I just needed whatever it was out.
… But one of the things – so whilst the follow-up treatment I've had privately, one thing that they haven't got is the sort of support services that go around it, so I have been able to access the NHS for a psychologist. I went for reflexology whilst I was having treatment, somebody to talk about benefit, some – my Macmillan nurse was based at the hospital, so I have sort of taken bits from private and public sector, so I've been lucky to do that.
So going back to the question about Avastin, I think because I … had that cover, there wasn't any question about it … I don't know whether I would have been eligible had I been NHS … I don't think it's necessarily routinely available to everybody, there's certain criteria, it might differ depending where geographically you live. So I do feel fortunate that I had the cover and was able to get that without question.
One particular group of patients who are seeking access to drugs not currently available on the NHS are advanced bowel cancer patients who are on their third or fourth line of treatment and would also like to access Avastin. This is not currently funded by the NHS because NICE has not approved access to the treatment due to what is considered insufficient evidence of benefit. But as with the case of the ovarian cancer patient above, some bowel cancer patients have been prescribed the drug privately, pointing to its availability in other countries and a small but growing evidence base that supports its use. These patients have the support of some of the larger charities for this cancer, although there is not a widespread campaign as we saw with other high-profile challenges to NICE decisions about targeted treatments, such as from the breast cancer patient community.
Some patients, such as Lydia, access this drug through private medicine because they have insurance, often as part of their workplace benefits. Lydia, a young woman in her thirties diagnosed with advanced bowel cancer, did not experience many of the difficulties with getting a quick diagnosis and access to expensive treatments that she knows other people in her situation face, despite the relative rarity of her case. Lydia, like Sara, told us she was fortunate to have private healthcare insurance and has had access to the best surgeons, oncologists and treatments. She was able to choose to take Avastin alongside other chemotherapy drugs because the alternative treatment protocol might have harmed her ability to continue with her sporting pursuits. This personalised care was more important to Lydia than the ‘numbers on the page’ about her particular cancer subtype. Lydia found the molecular information difficult to process and told us she avoided trying to find out too much about it as it was overwhelming. She felt very fortunate to be receiving private care, but it also brought a sense of guilt that she had to manage, partly by participating in other research and awareness-raising activities around prevention. Lydia felt that it was wrong that she should be able to benefit from excellent care whereas others could not because some unnamed persons were ‘acting like God’ to restrict treatments for some NHS patients. Her guilt also meant she kept what she felt was her privileged position as a private cancer patient secret and did not disclose this to other patients in her online community.
Other patients with private healthcare insurance switched to and from NHS and private medicine depending on their needs. This movement between public and private provision is a feature of the current system, as there is choice embedded in NHS service delivery alongside rationing. Alongside major private hospitals, some NHS hospitals might run private patient units (PPUs), including for cancer. These PPUs have an ambiguous position in the NHS, offering a quicker scan or a treatment not available on the NHS but also, as Guy has pointed out, sometimes being advertised as offering the opportunity to patients to help the NHS by reducing the strain on the service (Guy 2019). We interviewed another patient, Rachel, who, like Sara, had switched back and forth between NHS care and private care and was now receiving targeted therapies funded by her insurer which would not otherwise be available on the NHS. Rachel's story illustrates the complexity of these transitions and the feelings these evoke, captured in this lengthy extract:
at the time it was … I was a bit like a deer in the headlights, as you can imagine … I didn't know anything about cancer. I mean none of my family had had cancer … I was so completely inexperienced with any of it, but I was doing quite a lot of reading … on my condition and the different treatments available to me, and that's when things started to, for me, become a little bit clear that actually … there might be something better for me out there. But actually, I'm not on it because I'm under the NHS.
… I did actually mention it to doctor but … to be honest with you … she'd pretty much written me off … that's a common factor for a lot of people that find themselves at stage four … with all the NHS pressures, that actually it's ‘well you're terminal anyway … we're doing our best, it is what it is’ … that didn't really sit that well with me, as you can imagine (laughs softly) so, I transferred my care [to another hospital].
But I, again I transferred as an NHS patient … and I sat down with my oncologist on the … first day and said to him, ‘Look, am I, am I actually on the best treatment here, or could I be on something better?’ And he said, ‘No, you're on the best treatment.’ And I said, ‘Well look, I've, I've read about this thing called Avastin, this drug called Avastin. Is it not worth [trying], because of my BRAF mutation?’ … and he said to me, ‘Well, it's very expensive … so don't worry about it too much … it's not really that big a deal.’ And I said to him, ‘Well look, I'm … I'm potentially a private patient, I've just not really looked into that too much. I don't really know much about the … private system, and I've got it through work.’ And he said, ‘Well look, go and speak to – who are you with?’ and I said, [name of insurer] and he said, ‘Well look, speak to them and see, see if you've got, see if you're covered, and if you are, let me know.’ And I did. And they said to me, ‘Yes, yeah, we would, we would absolutely fund Avastin,’ and I was like, ‘Okay, fine.’
Then, I emailed my oncologist to say, ‘They've said they will fund me. I'm fully covered,’ and he … phoned back within, between ten minutes and half an hour, and … the whole conversation completely changed. It was very much, ‘This is incredible. Absolutely, we need to get you on Avastin. Avastin really should be available on the NHS anyway, but it isn't because, … NICE haven't approved it. But it is a standard of care across major, other major countries in the world.’
And I think … that for me, I found quite shocking and … quite unfair really because it's not like, I think it's very separate to people being on clinical trials and new drugs coming along … But a drug that's actually approved across all the other major countries, you know, with the, with the best performing healthcare systems in the world, you know, and it's not approved here. And actually the, the criteria and the justification from NICE I don't think particularly stacks up. Um, and that's, again that's something that, that my oncolog[ist] said to me, he said, you know, ‘The, the problem is that the overall data isn't that great, but actually it's good for specific types of colon cancer. And actually, yours is one of them, so we should put you on that,’ … which was, which was great. … I've been on that ever since.
But I've got lots and lots of friends now who are BRAF mutated and, actually quite scarily, what, what I'm tending to find is that the majority of BRAF patients are, they, they tend to be a lot younger. They tend to be the younger lot and actually these are the ones that can withstand much greater, much stronger treatment and give themselves a much better opportunity and best chance in life to at least have, you know, I don't know, three or four years rather than the one or two that they're being handed.
Um, so the frustration for me is that the, the guideline … haven't been approved in the correct way, I don't think … the whole thing has been looked at in, in the most appropriate way … So I'm, I'm very fortunate, but I've got lots of friends now who are – I've got one chap in particular and he's literally raising money for each session and it's costing him about £1,800 every two weeks. So that's quite frustrating.
Rachel found the guilt and anger at this injustice difficult to manage alone, and this spurred her to write a blog and set up a closed group on Facebook to share her experiences and support other patients to identify the best treatment options depending on their molecular subtype. She spoke about the need for patients to realise that their NHS doctors were operating with ‘one hand tied behind their backs!’ as part of her efforts to encourage patients to be more active and challenging so that they got the best care. This work sat outside of the more positive, moderated zones of the main charity in this area and included discussion about a range of alternative treatments alongside conventional medicine and targeted treatments. Rachel also spoke about her belief in the NHS and her distress that it was not being given sufficient funds to provide these more expensive treatments. Through these accounts Rachel balanced her identity as a private patient against her sense of biosociality with other similar patients as well as her citizenship and support for public services such as the NHS.
Other patients we interviewed were either already self-funding or planning to pay for treatments themselves. The scale of this market is difficult to quantify, but a recent report estimated that ‘the market in self paying patients was heading for “double digit growth” over the next few years and that this was fuelled by longer NHS waiting lists, curbs on access to NHS treatments, and rising private medical insurance premiums’. 7 Some of these patients were able to afford to self-fund without doing things such as remortgaging their homes. One such patient was Phil, another advanced bowel cancer patient, who was self-funding Avastin. Phil was part of an online community of cancer patients and supported the work of one of the main charities for bowel cancer. Like Rachel, he had become something of a public patient through a blog and presence on social media, and his posts included discussion about self-funding the drug which referenced his sense of being fortunate that he was able to find this money. Phil also engaged with more political discussions around NHS resources and funding, including retweeting posts by other advocates about the need to make his treatment more widely available on the NHS. But Phil's decision to self-fund Avastin was careful and contingent, and he was aware of the uncertainties involved:
I suppose it's a difficult one, isn't it? I mean … it's hard to … know. I suppose from my perspective, I kind of thought, look, you know, I'm in a situation where I've got advanced bowel cancer … I can afford to do it, fortunately, so I thought, well, you know, although it's expensive, I'm gonna, you know, give it a whirl. You know, I don't want to … die wondering whether … it would've made a difference or not. And I think one of the problems … with Avastin is it's difficult to measure what the effectiveness of the drug is. … I'm taking it alongside chemotherapy and … if the overall treatment's effective, it's, it's not really possible to … measure whether the effectiveness is through the chemo or through the Avastin … But, you know, I thought … I'm gonna give it a go for this cycle and see where it takes me, really.
This captures the ambivalence and contingency involved in self-funding decisions, showing that this is not necessarily the activity of the overly optimistic or naïve.
Advocacy for access to personalised cancer medicines as part of NHS care takes on different forms and is not solely the preserve of patients. One advocate, Michelle, had a background in public relations and a high profile on social media and had been spurred into action by the death of a parent who had not been able to access targeted therapies as soon as she had hoped, as she explains in the quote below:
it'd taken me a year [to win the appeal], and it was literally a year before I, you know, that I'd found it and then it had taken a year to do it, so she was virtually in a hospice by the time we, we got this damn drug approved.
… however, she took it, and … she lived, you know, and for her it was like, a victory anyway, it did extend her life, it did help her quality of life, but of course it was too late for her. So, it was important then to keep going. So I did about seventy Exceptional Case appeals; within the first six months after mum's death, and overturned all of those, so there was a whole raft of cases, and that was all over the country, from Wales and England, and Scotland.
Michelle's story is interesting because it speaks further to the creation of a new kind of expertise emerging in this area – expertise in challenging NHS funding decision making and advocating for targeted therapies for patients on a case-by-case basis. Michelle takes on cases and supports patients to challenge refusals of drugs by local Clinical Commissioning Groups within the NHS, operating in the absence of definitive approvals by NICE for a growing list of experimental treatments, as well as challenging the ‘postcode lottery’ between the different regions of the UK. She describes her work thus:
by the time they get to me, nobody's listening to them … every avenue is shut to them. Nobody gives them an answer, and I think the most important thing that I do with patients, I've actually just got an email this morning about a patient saying, ‘if you hadn't have empowered me, I'd have never have questioned’ … the first thing I do with a patient is, number one, I listen, I just let them tell their story without interrupting; and say everything that they feel they never get the chance to say.
And then, I say, ‘right let's unpick it, and let's take control of it and let's see how we can help’, and I think, many, many of them, I would say are in crisis by the time they get to me … they're exhausted, they're devastated, they're weak, they're frightened, and [this] has brought about another part of what I want changing – advocacy within the NHS – as soon as they speak to me, I would say nearly a hundred per cent say, that's the best time … I've felt in the whole journey because it's for me, I focus on letting them feel a bit more in control and understanding the process, and understanding how it works; and the change that gives to a patient and their families is, is really quite miraculous. And to me, it is so easy, I can spend fifteen minutes with a patient and completely change their mind-set and their journey, and I'm appalled that that isn't available to them in the NHS.
Michelle was a self-styled ‘warrior’ for her patients, who told us how she struck fear into NHS managers and bureaucrats as she campaigned to get patients the treatments they needed. As part of this she sought to tell patients’ stories and to celebrate their achievements and characteristics, rendering them popular as a means of garnering support for her efforts to get them what they need. Michelle posted links to blogs, posts and crowdfunding appeals by ‘her patients’ online and sought gifts from donors to surprise them on special occasions, such as tickets to the theatre. She was funded by private donations and did not want to be too critical about the pharmaceutical companies or the NHS as a public institution. Michelle also expressed reservations about how quickly some patients sought crowdfunding, preferring to try to challenge the NHS first to secure treatment. In so doing she operated among the clash of evidence, expertise and values of public and private care, forging what she framed as a new expertise that was required to navigate their growing complexity in the genomic era.
The private patient and advocacy stories we have explored here are, of course, just a small fraction of the kinds of experiences patients faced with difficult decisions around targeted treatments they had to navigate in the course of their cancer. We have shown how being a private patient is not about being filled with hope or optimism, but is marked by ambivalence, including feelings of guilt and obligations to other patients that must be managed, sometimes in public and sometimes very much in private. We have also shown how these dynamics open up new kinds of biosocial collectives around subtypes and drugs sought, and roles for patients and their supporters as advocates and other kinds of experts in personalised cancer medicine. Yet we also have to appreciate that these kinds of activities are being enacted by, and reinforcing the cultural capital of, a relatively exclusive kind of patient and advocate – often younger professionals who are articulate and tech-savvy, able to use social media to good effect to explore their experiences and connect with others. These already privileged patients and advocates are operating at the intersections of private medicine and social media, which further ‘buttresses their sense of personal action, freedom and responsibility’ (Van Dijck and Poell 2013: 10) as they access these treatments for themselves and others in an effort to extend their and others’ futures. At the same time, they enact critical interventions in public space, challenging what they frame as the failures and inequities of the NHS. But this is not presented as an attack on the foundations of a public service. Instead, critique is offered in the spirit of improving the NHS, as private and public forms of medicine are inevitably entangled therein.
Crowdfunding: crafting futures in the digital economy
These entanglements of private and public care and privileged kinds of identities are particularly apparent in the arena of crowdfunding for cancer treatments. A British Medical Journal study reports that there has been a significant increase in online crowdfunding for alternative treatments on platforms such as GoFundMe and Just Giving, suggesting that, since 2012, £8 million has been raised, mostly for treatments in clinics abroad. 8 Other patients are fundraising for experimental treatments not available on the NHS, including targeted therapies. A recent BBC report found that £20 million was raised on crowdfunding sites between February 2018 and 2019 for cancer treatments not available on the NHS. 9 Clinics providing these treatments abroad also combine alternative and experimental treatments, and there is confusion about what kinds of treatments are showing positive effects in media reporting on so-called ‘miracle cures’. For example, a recent Daily Mirror article 10 on a ‘terminally ill mum’ who had received successful ‘alternative care’ at a clinic in Mexico was publicly criticised by an oncologist for not making it clear that Alectinib, a targeted treatment for a subtype of lung cancer (ALK positive), was probably responsible for this woman's good outcome, rather than alternative therapies such as the coffee enemas featured in the article. 11 The press has a central role in creating a profile for fundraisers as well as criticising the dangers of ‘quackery’ in this arena. As the BMJ notes, ‘Newspaper and TV reports on people with cancer drive donors to the crowdfunding sites, sometimes attracting the attention of celebrities, who boost funds. They also encourage others to seek the same treatment.’ 12
In this section, we will look more closely at the activities and experiences of cancer patients fundraising online for targeted therapies to explore what new kinds of cancer identities, work and public–private arrangements are developing as these sites proliferate. To understand how financial and cultural value is created by these practices we will draw on scholarship about digital capitalism which seeks to trace how value is accrued and by whom. This means we need to examine not just the efforts of fundraisers but of the platforms that host their activities, and the ways in which these are shared across other social media platforms and mainstream media through processes of cross-syndication which entwine social and mass media logics (Van Dijck and Poell 2013). We will also consider how fundraising becomes successful and what kinds of qualities and attributes fundraisers need to cultivate in order to be effectual. As Steinberg (2015) has argued, ‘survivorship’ has replaced ‘victimhood’ as a key subjectivity of ‘good’ cancer patienthood, and social media invites audiences to form judgements about the qualities and worth of the cancer patients seeking their help. Exploring how some fundraisers work to become popular to generate funds, we consider an array of other kinds of activities beyond raising money, such as being profiled in local media, blogging, undertaking charitable work and producing different cultural outputs such as books and art. We consider how fundraisers turn themselves into brands and establish popularity through the use of metrics that are key to the functioning of the social media platforms. Being a worthy investment is key to success with fundraising, but how does this happen, and how does it feel to those involved in doing this kind of work?
Crowdfunding sites are by now a familiar feature of life online. Many of us will have donated to fundraising efforts by family and friends, and perhaps we have also donated to strangers when their stories touch us. Seeking donations for cancer therapies online is typically driven by a sense of necessity as someone's cancer progresses and options for treatment narrow. Fundraising sites are often run by family or friends rather than the patient directly, but patients nevertheless play an important role as the ‘face’ of the campaign, and this includes providing often quite intimate details about their hopes and aspirations, as well as their experiences of treatment, in a series of updates and links to blogs, Facebook pages and other social media posts. Analysing a set of 15 fundraising campaigns for personalised cancer medicine identified via online searches of the main crowdfunding platforms, we can identify a particular set of discourses or tropes about the worthiness of the cancer patient seeking treatment which point to their admirable qualities, caring responsibilities and track record/commitment to ‘giving back’ to the community through fundraising and campaigning for charities and worthy causes. As Stage (2017) has shown, being positive, aspirational, determined, grateful, funny, entertaining and caring are important in cancer blogging. Positivity is also important to successful fundraising, but so too is being a good parent or partner and a skilled worker or artisan. Gratitude to all of the donors, large and small, whether through direct donations or through organising discos, cake stalls or sponsored walks, is also vital.
One crowdfunder, Claire, whose posts we followed until her death from secondary breast cancer, skilfully combined these various discourses across her fundraising, blog and Facebook pages. Claire's initial fundraising effort raised £15k over 17 months for targeted treatments not available on the NHS, and she moved to a different platform shortly before her death because the first platform had been taken over by another site and no longer supported PayPal payments for personal fundraising. Claire noted that at this point she had not had to use the money for the drugs, but that there was still a need to raise further money because treatments might be available soon and they are very expensive. Claire's fundraising site was mainly shared through her Facebook page, various campaigns she supported, and press coverage that she attracted. The Facebook page includes posts that celebrated the numbers of likes and shares her page achieved and asked people to donate on key occasions such as ‘Giving Tuesday’. The page includes links to her blog, which tells Claire's story of living with secondary breast cancer over a number of years, and is heavily focused on her desire to give her teenage child a normal life and her sense of guilt that this will not be possible. There are a lot of images on the blog of Claire and her child smiling together in their home, on holiday and at various events, which are reshared on the fundraising site and Facebook. Claire tells the story of having to give up a professional job to become a full-time cancer patient, recounting the ups and downs of treatments and results, describing her hopes and gratitude, disappointments and frustrations. Her story includes details of her campaigning work with a breast cancer charity and campaign group for access to targeted treatments, with numerous links to press articles, profiles and TV news features. Although she provides some information about the specific molecular profile of her cancer and the kinds of drugs she needs, her profile pitches cancer as a disease that affects everyone. She shares humorous details of living with cancer every day and stresses the importance of taking pleasure in the little things, like getting a new haircut. Combining these different registers and sharing content across these different digital platforms allowed Claire to build up a profile as a worthy investment herself, in part by creating a space where criticism of the need to do this work is articulated. Through these accounts Claire constructed her online identity as both ordinary and exceptional. She is at once thrust into the world of cancer care and politics, but she is also just like you and me, wanting to do the best for our families. The final post about Claire's death, by her family, pays tribute to her campaigning work.
For other crowdfunders, being an advanced cancer patient seeking targeted treatments not available on the NHS has opened up new vistas of cultural work as author, poet or artist. Tom was a successful artist prior to his diagnosis with advanced cancer, but his efforts to access targeted treatment on the NHS were unsuccessful, so his partner turned to crowdfunding. The fundraising campaign has been very successful, trending on the crowdfunding platform at one point, and raising over £200k in less than 30 months. The site and related posts and pages by Tom, as well as media coverage of his plight, are replete with emotions of gratitude, anger and hope. But they all start from the position that Tom is a loving husband and father and a successful and much-loved public figure with considerable cultural capital who has entered into an intense period of creativity as he faces up to his illness. In one broadsheet newspaper article about Tom, his story is recounted as one of success, followed by pain and despair and then a new life of art and privately funded treatments supported by online fundraising. Tom's reluctance to seek funding this way, and his anger at underfunding of the NHS, pepper the accounts of his situation, as do his struggles to produce art, remain positive and inspire others. Art, politics and science feature in his personal story and engagement with public issues. The fundraising page is somewhat off-centre from these activities, not always mentioned or linked to, but nevertheless crucial to the way in which Tom is managing his condition. The site itself is managed by his partner, and this involves updates which include an emotionally charged video where his partner speaks about her family's hope for the treatment, as well as her exhaustion and gratitude. It includes poignant stories about people who are themselves facing difficult situations or do not have a great deal of money, such as a child who had lost a parent to cancer, who have donated to Tom's treatment. In the midst of these emotive stories we find links to bank account information, but there are few details about what the money buys in the way of treatment; rather there is a sense that options are being held open should Tom choose to pursue alternative therapies or other treatments using the funds raised.
We also identified more overt appeals for funds by other public patients such as Gillian, who has advanced ovarian cancer. It is interesting to note, however, that this fundraising effort was not as successful as that of other crowdfunders in our study. Gillian raised just short of £25k in 14 months. Although this was not for a particular targeted treatment, it was organised around the prospect of needing such treatment in the future and, as with other fundraisers, it included the possibility of funds being used for alternative as well as targeted therapies. We were fortunate to be able to interview Gillian before her health deteriorated and as her fundraising initiative was launched. Many of the themes in her voluminous social media posts and media coverage are present in her interview. Like all of the crowdfunders we have followed, Gillian is a young woman who was diagnosed after a diagnostic odyssey of missed symptoms and near death, in her case with late-stage cancer of the ovaries. Gillian's story is of a life that has fundamentally changed following her diagnosis, not just because of the extensive surgery and treatment regimes she has had to undertake, but because she has made being a cancer patient a full-time job. She has become an author and her books have achieved modest success in what is a busy market of cancer biographies and self-help books. Prior to setting up her crowdfunding page, Gillian was already deriving financial value from her cancer patienthood via her books and work as an alternative therapist and teacher.
Gillian has created a complex web of outputs and activities designed to inspire other patients, often based around memes or quotes that she thinks are particularly positive and upbeat. In her interview she told us about one of these:
I saw a quote the other day which I really liked and it was ‘did you have a bad day or a bad ten minutes you milked all day?’ and I think that's so true, people focus on the negatives all of the time and people are martyrs … a lot of people say to me ‘oh you must be so down all the time, you must cry a lot?’ and I'm like ‘why must I?’, it's just about enjoying life.
This theme of resilience is further underscored by Gillian's use of language from youth culture, when she refers to her supporters and followers as ‘bitches’ or ‘motherfucking warriors’ and tags her posts with hashtags such as ‘StillHereBitches’. At the same time, Gillian told us she ‘hates it’ when people say they have ‘lost the fight with cancer’: ‘I absolutely loathe any battle survivor victim fight terminology’, because cancer is not the enemy but ‘part of me’. This captures the cacophony of competing emotions and aspirations that feature in this public version of cancer patienthood, reflecting the contradictory position that patients find themselves in, where they aspire to high-quality targeted treatment personalised to them but fear that it will not work in the end. One way of managing this for Gillian is to appeal to the ubiquity of cancer: ‘we are all terminal; our life is precious’.
Gillian's investment in complementary therapy, as a recipient and practitioner, is also mixed with her investment in high-tech therapies including targeted treatments. The personalisation she advocates and seeks is hybrid and fluid and her engagement with scientific expertise is as partial as it is complex. Gillian refers to targeted therapies as ‘Western medicine’ in her blog where she also writes about her experiences of being on drug trials alongside her alternative treatments and therapies such as crystal healing. Elsewhere the targeted therapy is positioned as a ‘maintenance drug’ which is a small part of her ‘holistic treatment regime’ or her ‘daily protocol for life’ (which she notes is detailed in her book).
Unlike some of the other crowdfunders we have followed, Gillian frequently refers to her fundraising, and her posts link to her fundraising page across her social media outputs. Her discussion of fundraising includes the typical mix of gratitude and reciprocity we have discussed above, but Gillian goes into more detail about how she has been spending the money raised as part of her efforts to provide fellow patients with a protocol for how to manage their cancer day by day. We learn from these posts that Gillian started off raising money for Avastin, but elsewhere she posts that she is not privately funding Avastin any longer, and has used money for, among other things, a shaman. Her story has moved on to a focus on using complementary therapies to extend her life so that she is well enough to access an immunotherapy trial, the next hope for miracle treatments in the world of personalised medicine.
Throughout these various accounts we can see the importance of being a worthy investment to successful fundraising for targeted therapies not otherwise available on the NHS, including the demonstration of expertise, being hardworking and aspirational, special, but ordinary, like you and me, and a good parent, partner and socially useful citizen. Being funny and likeable, interesting or provocative and thereby articulating the cancer patient's personality as a strong ‘brand’ is also important to success. Accounts are inconsistent and at times contradictory, articulating a fluid and complex set of affective repertoires of gratitude, regret, anger and hope expressed through sometimes quite intimate and emotive stories and images. These accounts are part of the ‘like economy’ (Gerlitz and Helmond 2013) that extends Facebook's network of counters, buttons and clicks across social media platforms which facilitate further donations and reach. Fundraisers use and build from their existing online and offline networks in cancer communities, alternative medicine, the arts and the media to further raise their profile and donations. Within this we see molecular profiles and therapies sit alongside alternative knowledge and therapies as people craft possible futures for themselves and their relatives.
When we turn to consider how this money is spent, we can see it supports private medicine providers and pharmaceutical companies who produce the targeted therapies, but it also supports alternative practitioners and therapies in some cases. What is less apparent is that these activities create profit for the social media platforms via fees, advertising and surplus value generated by the sale of user data (Zuboff 2019). But for fundraisers, producing these carefully curated stories of investable identities and managing how this value is derived and perceived by donors is not always easy or straightforward.
One of the crowdfunders we interviewed was particularly candid about her experiences and worries around these activities. Stacey discovered she had advanced breast cancer while she was pregnant, and, following the birth of her child, went on to receive surgery and chemotherapy. She was told at this point about drugs that might be good for targeting her kind of cancer in a further round of treatment by her oncologist, but she was also warned that these drugs were not funded in her part of the country. The oncologist suggested that she might want to consider fundraising. Although grateful to the clinician for the early warning, this caused worry and upset for Stacey, who was initially ambivalent about fundraising. Her family decided to fundraise on her behalf despite her reservations. Stacey told us how her family was already fundraising to support her, so increasing the scale of fundraising to cover drugs was the next step. Over the course of 30 months nearly £200k was raised by her fundraising campaign.
Stacey spoke about her enormous gratitude and the sense of being loved and cared for that came with this experience. But she also expressed ambivalence about their activities, which centred around worries about the burden of being a good recipient of support. Stacey found that as a result of the decision to fundraise on this scale, she had to research different crowdfunding sites and how to open a bank account for these types of funds. Stacey also found the work of managing all of the donations quite intense:
It just went crazy and that is basically because, well, the fact my story was quite emotive and [where I live] there is still a very strong sense of community. Everybody knows everybody, and so immediately that I put it out there, it just … spread and everybody got involved … complete strangers were messaging me saying ‘I'm gonna do this for your fund’ … Snowdon, marathons … all sorts of crazy things.
The fundraising page and associated Facebook pages are filled with stories of the ups and downs of Stacey's diagnosis and treatment and her family life, alongside pictures, posts and gratitude for these various fundraising events. But Stacey told us she also found this ‘overwhelming, in a bad way’:
There were maybe like three or four different events happening every weekend … and lots of people understood that I couldn't make it to all of them but some people felt I should be there. And it was really hard to say no to people who were raising money for me. It hit a point when I thought I cannot do this.
Stacey found the work of doing updates and thanking donors, as well as attending events and researching the best means of fundraising, exhausting alongside managing her illness and taking care of her young family. She also had to field inquiries from other cancer patients about how to be successful at fundraising. She spoke about how, in the midst of this ‘fundraising whirlwind’, she began to feel guilty that the money had not yet been spent on the drugs she was fundraising for (one of the drugs had subsequently become available on the NHS and she was not yet in need of the other drug). Stacey began to ‘gently encourage people to donate elsewhere’. She also became concerned about what would happen to the money should she die – if it would result in tax on her estate. She spoke to the bank about whether or not it might be considered to be her savings and should be disclosed to the state, and renamed the account.
But the most striking part of Stacey's story is her worry that she would be judged by her donors if they became suspicious that she was not using the money as intended. She told us about a controversy in her online community related to one relatively wealthy family who had crowdfunded for a cancer patient who had subsequently died, and there were concerns that the money had been spent on nice holidays and material possessions. This caused Stacey to worry about how she would be judged when her family bought a new car, and meant the family chose not to spend their other savings on a motor home in case it caused scandal. Stacey commented:
With these crowdfunding sites … it's just a very grey area. I mean, is it your money? I'm not classing it as my money, but it is really … I could spend it on anything I want to. It wouldn't be morally right, but I don't think it would be illegal … but other people might not think like that … So, I do think that crowdfunding is … open … to abuse from people who might not have the same kind of … moral standard … say you're raising it for treatment and you're now dead. Can [the fundraising platform] say ‘Well, we're not using it for that now, so you can't use it for something else?’ It's something that does definitely worry me because I don't want to put my family in that position where they're faced with any kind of criticism or open to any kind of questioning from anyone else.
This story reveals some of the hidden labour of crowdfunding for targeted treatments, including the emotional labour of managing obligations to friends, family and donors in what is a moral as well as a financial economy. Behind the carefully curated stories of positivity and hope as a solution to the despair and pain that comes as cancer progresses, there is anxiety and concern that also has to be managed as part of being a cancer patient and making private troubles public in order to extend their future. Entering a ‘grey area’ between charity and the market, patients are raising money for future and current treatments (and sometimes other things) and contributing to the profits of digital platforms. There is ambiguity, too, around how funds are spent, including by relatives once the patient has died. Some sites remain open after death and donations can still be made in some cases. Sometimes the family does not inform donors how money raised for treatments that were not accessed was spent. As with private patients whose treatments are covered by insurance or who are in a position to self-fund using savings, crowdfunders such as Stacey can also feel guilty about patients with less support. As Stacey comments,
I'm fortunate enough to be in a position where I am able to write up my story in an articulate and … logical manner. I knew what I needed to say and how to say it … I don't mean in a manipulative way, but I tried to be clear and open … so that people know what I'm fundraising for and why I'm doing it … not everyone is in a position to be able to do that … to express what they need and why … I think that's really sad because again we're discriminating against people who need the help as much as anyone else … So we are coming back to poor people being worse off which is depressing really because it's all becoming like a two-tier system … it should be healthcare for all. That's the premise of the NHS and it's dividing people again.
We came across examples of these less successful fundraising campaigns in our study, such as a page set up on behalf of a mother with brain cancer, seeking funds to cover four cycles of targeted therapy, which had raised £20 of a target of just under £7k. There are no updates on the site and we could not find any media coverage or Facebook sites about this patient.
Stacey, like other crowdfunders in our study such as Claire, managed this sense of frustration and guilt about relative privilege by supporting campaigns directed at increasing access to targeted drugs which are focused on challenging the pricing policies of pharmaceutical companies rather than the NHS: ‘It's not the fault of the NHS that they can't afford these drugs. They are being manipulated by drug companies.’
Some patients faced with a cancer diagnosis are turning to private healthcare, advocacy and fundraising initiatives online in order to access targeted therapies. This creates new biosocialities in and through the digital economy. Younger patients with later stage diagnosis of particular cancers who might share a particular mutation come together to seek access to particular drugs to extend their futures by a matter of years, sharing experiences and advocating for improved care and access to therapies. As part of this, they share experiences of private and NHS care, sometimes revealing and at other times masking their status as a private patient, and in so doing manage a complex set of feelings of privilege and guilt. For some patients and their supporters (for example, relatives of deceased patients who might become advocates on their behalf) this involves the cultivation of new expertise, particularly in advocacy and negotiating NHS bureaucracy, and/or encouraging patients to be active as their own advocates and self-carers. Experimental treatments and molecular profiling in the UK are part of these stories, but so too are alternative therapies and clinics or trials abroad. The NHS is lauded and criticised (alongside pharmaceutical companies). These collectives and new kinds of experts are not ‘astroturfed’ patient-groups (Largent et al. 2018), nor are they in the mould of traditional consumer-advocacy groups, but they operate at the intersections of public and private spheres and healthcare sectors.
Crowdfunding affords a particular kind of digital identity for cancer patients, marked by positivity, hope and intimacy around some of the details of their medical treatments and family lives. Successful fundraising involves cross-syndication, as fundraising efforts and stories need to be shared and liked on other platforms to intensify support. News media coverage in local papers and regional TV are also important in this kind of profile raising. Fundraising depends on capitalising on and extending patients’ existing cultural capital to project an investable identity in the so-called ‘like economy’ of digital media. The production of these identities, compulsory expressions of gratitude, and management of the funds raised nevertheless requires considerable hidden emotional and administrative labour that can add to the burden on patients managing treatments and family life. This work produces donations but it also produces profit for the digital platforms that host these efforts, although this remains unacknowledged for the most part. Crowdfunding seems to be a popular option for patients who are already familiar with and engaged with cancer culture online, even before treatments are actually needed. Even after their death, crowdfunding patients remain as ‘data phantoms’ (Ebeling 2016) on some sites and pages, as exemplars for other patients who will inevitably follow in their footsteps. Through these practices we can see that cancer patients and their advocates are turning to the market for targeted therapies via the digital platforms of surveillance capitalism (Zuboff 2019) to craft a future for themselves in the face of a bleak prognosis and narrowing options on the NHS. An array of Facebook sites and groups, blogs, crowdfunding and other social media platforms support these future-crafting activities. An ‘elective affinity’ is thus forming between surveillance capitalism and expensive personalised cancer medicines in the molecular age.