In ‘Medici’ (Doctors), the final episode of Caro Diario, a 1993 Italian semi-autobiographical comedy film, Nanni Moretti, the director and protagonist actor, presents his personal experience of navigating the medical world to find the cause of the persistent itching and insomnia from which he is suddenly suffering. The spectator follows Moretti in his numerous meetings with specialists, each offering a different explanation and cure for his problem, with none of these remedies proving effective. At a certain point, the protagonist, tired of failures, turns to alternative medicine specialists, but even this path proves unable to alleviate his symptoms. After several months of tribulations, a doctor orders a chest X-ray which leads to the diagnosis of Hodgkin lymphoma, successfully treated with chemotherapy. In the film, Moretti does not hide his privileged situation, since many of the specialists he goes to are well known and have been suggested to the protagonist by his network of friends and acquaintances. However, the tendency to consult more specialists is present in Italy in various socio-demographic groups. It is partly favoured by the organisation of the healthcare system, which allows greater mobility to patients, and by the stronger links between the private and public systems (cf. Bardazzi, 2009). Furthermore, the frustration and sense of hopelessness that the film vividly displays are also common experiences for many patients who find themselves navigating healthcare systems, in which complex pathways can become an additional difficulty. How patients can access available specialist care and treatments is directly related to how healthcare systems are organised, and their internal differences are structural elements that influence which treatments patients can access.

Differently from the low-resource national systems of the Global South and the for-profit, insurance-centric US healthcare system – the main focus of existing ethnographic work (e.g. Livingston, 2012; Dao and Mulligan, 2016; Nédélec, 2018) – the three countries here considered have universal, high-quality public services that cover most cancer treatments free of charge. It is true that the definition of a universal healthcare system does not take into account the forms of privatisation and increased cuts to public expenditure which, even in these three countries, coexist together with measures to guarantee that all residents can have access to care. Furthermore, more or less implicit and surreptitious forms of privatisation coexist, with entire medical specialities, such as dentistry and cosmetic surgery, predominantly operating in the private sector, with the public accepting this situation. The social insurance system in France, differently from the single-payer systems of the UK and Italy, pushes more patients to resort to the private sector, particularly for treatments that are not considered life saving, such as breast reconstruction (Greco, 2015). The fact that cosmetic surgery is a branch of medicine predominately operating in the private sector is relevant in the case of breast cancer and can have an important role in orienting some patients toward private facilities to undergo breast reconstruction. In addition, the rapid development of new treatments for metastatic breast cancer introduces the question of how rapidly costly oncological drugs are authorised for use in the public sector, with small but growing numbers of patients who decide to pay significant sums out-of-pocket for treatments still not authorised in the public sector. In the following sections, I will outline the main characteristics of the UK, Italian and French healthcare systems, particularly those related to oncology. National healthcare systems are an important part of the process of organisational assemblages that mediate global biomedicine with local biomedicines (cf. Lock, 2001; Collier and Ong, 2007; Ong, 2016). The concept of ‘organisational assemblage’ indicates both the complex relations between individuals (and their bodies), institutions, procedures and other resources needed to pursue specific aims, and the discourses that constitute the organisation on paper (cf. Deleuze and Guattari 1980; Tlili 2008). In this sense, organisational assemblages describe the respective places and tasks of patients, medical professionals and others, including the places and tasks that often remain only ‘on paper’, without being fully enacted. While an understanding of assemblage can also be applied to emergent and temporary organisations of healthcare, in this book, I limit the concept to relatively established institutions, while highlighting how these act in a variable and relatively fluid way in their day-to-day functioning.

I will also discuss how patients move within these systems and how they try to navigate them. Patients try to circumvent the shortcomings of healthcare systems characterised by a rigid organisation and increasingly limited budgets. In this context, they try to find, rearrange and reassemble resources to maintain control over their situation or to be able to enter into contact with trusted professionals or institutions, while a minority of patients who can afford to do so draw on personal financial resources to compensate for the gaps and rigidities of the system. I use the concept of ‘bricolage-assemblage’ to describe these practices. The general concept of assemblage has been used to analyse how more specialised figures – informal and recognised facilitators of international medical travel – fill the gaps in the organisation or give access to configurations of healthcare otherwise unavailable (Chee et al., 2017). The concept of bricolage, on the other hand, has been used to describe the navigation of the system on the part of patients by combining different resources to deal with the same challenges (Phillimore et al., 2019), while noting how such bricolage might legitimate further rollbacks of public healthcare provision. My use of bricolage-assemblage combines these insights to describe the activities of patients and identifies this kind of assemblage as the other face of the organisational assemblages enacted by healthcare institutions.

United Kingdom: the NHS and its transformations

The UK's NHS is the prototype of the universal healthcare system outside socialist countries. Created in 1948, it reflected both the extensive welfare policies of the Labour government elected in 1945 and a wider consensus, at the time partly extended to the Conservative Party, on the need to build a welfare state. The role of the consensus means that the NHS-like healthcare systems are often named ‘Beveridge’ systems, crediting the Liberal economist author of the 1942 Beveridge report on the perspectives of a welfare state, rather than Aneurin Bevan, the Labour Minister of Health who supervised the creation of the NHS. The NHS has been characterised since its creation by being free at the point of use, and by state control of both funding and delivery of services (one of the few exceptions being general practice doctors (GPs), who resisted plans to be transformed into state employees – Webster, 2002). This organisation ensured greater equality in access to healthcare when compared to social insurance ‘Bismarck’ systems, but was also open to more stringent rationing. Between 1979 and 2000, the centralised organisation of the NHS facilitated significantly lower funding (Webster, 2002) when compared to many other healthcare systems in Western Europe.

Moreover, unlike other systems (including the Italian one, which, as I discuss below, was explicitly modelled on the UK's NHS), the NHS has always been characterised by the central role of the GPs, who control access to most specialist services through the referral system. Moreover, internal mobility is possible but limited, and, generally, treatment can be accessed only in the services closest to one's residence – an approach that helps to standardise patients’ pathways and limits healthcare expenditures but also reduces patients’ choice. The possibility to move to seek healthcare and to choose a specialist or a facility is not entirely absent; in fact, patients can move in some cases within the areas corresponding to the Clinical Commissioning Groups (CCG). ¹ However, this possibility is generally limited (McPherson and Beresford, 2019), and absent in the case of oncological disease. ²

The NHS has a central role in British society. Stephanie Snow writes that the institution has shaped the ‘experiences of birth, life, health, work, communities, sickness, and death [of people in the UK] since 1948’ and underlines how ‘[t]he core purpose of the NHS is grounded in humanitarianism’ (Snow, 2018: 22). However, numerous analyses have also highlighted the privatisation processes that have transformed and continue to transform this pillar of British society. The Community Care Act of 1990 set off the beginning of the internal market in the NHS. Starting in the 1990s, a new approach focused on managing services in a way closer to a managerial and business model by creating a division between providers of health services and organisations that would purchase these services using an allocated budget, with different structures, such as hospital trusts and GP practices, competing to sell their services (Allsop and May, 1993; Paton, 2022). The split between purchasers and providers ended in 2017 and, starting from 2022, Integrated Care Systems – that is, a partnership system between different organisations of services in a territory (Dunn et al., 2022) – were introduced (Bayliss, 2022). The model has received some criticism; for example, the British Medical Association has expressed concern about the risk of involvement of private providers, as well as reservations about a single standard model of integration. ³ Several commentators share these reservations: Roderick and Pollock, for example, consider this reform a further step towards the ongoing privatisation of the NHS and say that, with the introduction of the Integrated Care System,

The changes that have characterised the NHS since 1990 are only partially noticeable from the patient's perspective, since one of the central aspects of the system – being free at the point of use – is still largely valid, despite an increasing porosity between public and private, and forms of co-payment that exist in both Italy and France are absent in the UK or are used only in a reduced number of situations. However, there are increasing elements of privatisation, particularly in the case of oncology. Several NHS Trusts now receive a significant portion of their funds from activities such as car parking, clinical trials and, in particular, paying patients receiving treatment in the private units of public facilities (Exworthy and Lafond, 2021). A significant proportion of private patients are cancer patients from overseas, with many arriving from the Middle East, but also from China and the rest of Europe (Burki, 2019; Hanefeld et al., 2013).

Furthermore, in 2008, after the publication of reports by the Secretary of State for Health (see Jackson, 2010), access to unfunded cancer treatments was extended to patients who could afford top-up payments (Kerr et al., 2021; Arteaga Pérez, 2022a; and Chapter 3). Among the recommendations of the report was the suggestion to keep ordinary free-at-the-point-of-use healthcare separate from services that involve a payment on the patient's part. Instead of acting as a deterrent, this recommendation has encouraged the creation of wards for private patients in some larger hospitals.

Within the NHS, the internal movements of patients are more limited than in the French and Italian contexts, and often organised in pre-established pathways. GPs have a gatekeeping role, and decide whether a patient needs a specialist referral or further medical tests. While a referral system from GPs is also present in Italy and France, the gatekeeping role in those countries is less stringent, leaving more choices as to where to seek a consultation with a specialist, as well as ways to do so without a referral (cf. Forrest, 2003; Garattini et al., 2023). The unequal distribution of services across the UK, combined with less freedom of movement for patients, has often been referred to as a postcode lottery (Bungay, 2005). It is not always easy to map out the inequalities, since in a given area good provision for some services can coexist with underperforming provision for others. However, the poorest areas often have underperforming services; for example, in the most deprived areas, it can be more difficult to see a GP (Torjesen, 2014). To address the unequal distribution of resources, various solutions have been adopted. In 1999, the central government established an independent public body, the National Institute for Health and Care Excellence (NICE), the objective of which is to provide an assessment of new medical technologies, in particular new drugs (Kelly et al., 2010) and of their cost-effectiveness, centralising across England and Wales the decisions on the availability of specific treatments. NICE is considered a good example of cost reduction based on a rigorous assessment of the benefits of new (and often expensive) treatments (Littlejohns et al., 2019). In some cases, however, its decisions are contested, and there is no shortage of newspaper articles presenting the institutional body as a mechanism that prevents patients from accessing new therapies. The tendency to standardise services across the national territory coexists with forms of devolution of decision-making powers and funds to local authorities, including in the field of health and social care, as in the case of Greater Manchester (the so-called Devo Manc – Coleman et al., 2015), where a significant part of my British fieldwork was conducted. Devolution arrangements might offer greater organisational autonomy to a local area, but they do not necessarily increase the amount of funds allocated to it.

The Italian national healthcare system: a geographically limited universalism?

The Italian healthcare system (Servizio Sanitario Nazionale – SSN) was created in 1978, when Law 833 abolished the mutua model, a Bismarckian system based on compulsory health insurance (Toth, 2016). The 1978 reform established a universal healthcare service based on general guiding principles, including universality (that is to say, the right to assistance for all people and for all forms of illness), comprehensiveness of the services provided (that is, offering all the services necessary for the well-being of the population) and equity (that is, the fact that the costs are distributed among citizens according to their economic circumstances, generally through a system of taxation, and by offering the same health services to everyone – Toth, 2014a).

As several commentators have pointed out, the application of these principles is limited by numerous obstacles (see, e.g., Mapelli, 2012; Toth, 2014b). The co-presence of public and private facilities is one of them. Indeed, since the 1990s, the Italian system has gradually included private structures in the public sector, thanks to the introduction of the accreditamento (accreditation system). The accreditamento is a process that allows any private healthcare institution meeting minimum standards to be included among the healthcare structures to which patients have access free of charge, with these institutions then being refunded by the state. In addition, in the 1990s, the introduction of the exercise of private professions within public structures, the intramoenia, further strengthened the links between private and public systems in Italy. What changes for patients is the quality of services, especially in terms of speed of access to specific examinations, which often involve a long waiting list in the public system. For certain kinds of services, the population can either use public or accredited structures, thus paying only a percentage of the costs, the ‘ticket’, or can decide to go to a private structure and pay in full, and out of their own pocket, without any reimbursement from the state (Mapelli, 2012). However, there is a significant variation in the costs in the private sector between services accessed with the intramoenia modality and those accessed in private facilities. The strong connections between public and private structures mean that a proportion of public healthcare expenditure, around 35% of the total, is used to fund providers outside the SSN, such as private clinics, medical professionals working in the private sector and private laboratories (Toth, 2016). The situation of the SSN has been made more precarious since the 2008 global financial crisis and the government's responses to tackle it. The Italian government made numerous cuts in various sectors of public spending, including the SSN, while also increasing the co-payments of individual patients (de Belvis et al., 2012; Frisina Doetter and Neri, 2018). These measures, coupled with a difficult financial situation for many, have decreased household expenditure on health in Italy (Sarti et al., 2017). Furthermore, starting around the end of the 1990s, a system of tax breaks has made it more convenient for workers and employers to subscribe to voluntary health insurance, with 21% of the population covered by health insurance in 2017, as compared with just the 2% in 1999 (Marenzi et al., 2021). Many commentators have highlighted how the strong integration between public and private healthcare, accentuated in recent years, can endanger the stability of the public healthcare system and risks accelerating even more extensive forms of privatisation (Domenighetti et al., 2010; Maietti et al., 2023). Furthermore, the organisation of the Italian healthcare system influences the behaviour and expectations of the population. The presence of the ‘ticket’ means that many patients do not perceive healthcare services as ‘free at the point of use’, and this makes the use of private services more frequent, not only because they are faster but also because sometimes they have very similar costs to what patients would pay with the ticket (C.R.E.A. Sanità, 2017). In the case of breast cancer, for example, it is not uncommon for Italian women to pay for a mammogram or a consultation with an oncologist (Valent et al., 2020).

A salient aspect of Italian society is the divide between the south and the north of the country, with the north historically considered economically advanced and culturally progressive, while the south is considered backward and marked by a more difficult economic situation (Greco, 2019). Moreover, the cuts to services and containment measures mentioned above have complicated the picture because, if the financial condition of the southern regions continues to be difficult (Gabriele, 2015), more recently the economic situation in the north of the country has also declined (SVIMEZ, 2014). The north–south gap characterises many aspects of the Italian economy and society, including healthcare, and while the Italian healthcare system is universal, there are significant differences in the quality of services between the regions. With the constitutional reform of the Titolo Quinto (the section five of the Constitution) of 1999, the competencies of health policies have been attributed to the regions, which have to ensure that regional healthcare meets the minimum levels of quality – Livelli essenziali di assistenza (LEA), which are established by the Ministry of Health and periodically revised. While we have seen that in the UK several NHS Trusts earn large sums from private overseas patients, other types of mobility characterise other healthcare systems, and in Italy we see intra-national mobilities of patients, a kind of mobility that has been less explored in the literature (for some exceptions, see Vindrola-Padros, 2012; Edmiston, 2018; Greco, 2019; 2021; Hunleth and Steinmetz, 2022). In Italy, it is often assumed that healthcare in the southern regions is of lesser quality than that of the northern regions, in terms both of the quality of treatments and of the waiting time to access these services. Levels of patient satisfaction in the north and south reflect these differences (cf. Toth, 2014b). In 2007, 800,000 hospitalisations (including day procedures) took place outside the patients’ region of residence (Pica and Villani, 2010). Of these, one third were people from southern Italy who had travelled to northern Italy for treatment. Journeys from the south to the north are defined as viaggi della speranza – journeys of hope (Viesti, 2001) – and are common experiences for a large part of the population (Greco, 2019). In 2006 Italian citizens were asked to vote in a referendum proposing several changes to the Italian Constitution, allowing, among other things, greater autonomy to the regions in matters of health. This aspect, in particular, was considered problematic, since the opponents of the referendum presented it as a limit to the possibility of residents moving freely within the national territory to receive treatment. The changes were rejected, but the topic periodically resurfaces in the Italian political debate, showing the importance of internal movement for health reasons. In 2020, due to the interregional movements of patients, €3.33 billion passed between regions, with most regions in the north having a positive balance, that is, having treated more out-of-region patients (especially from the south) than the number of local residents who were treated elsewhere (Cartabellotta et al., 2022). However, as we will see later in the chapter, the decision to travel or to remain closer to home to receive treatment can be influenced by a plurality of elements. In Italy, every patient has the right to move to receive treatment in any part of the national territory. Some patients decide to move by paying for private services. Medical referrals for the public sector, such as those made by a family doctor, do not limit the area or region in which patients can request treatment. While doing fieldwork in Italy, I tried to capture this complex healthcare landscape. I conducted fieldwork in Apulia and Emilia-Romagna. Apulia is a southern region with a healthcare system considered less well performing, while Emilia-Romagna, located in the centre-north of the country, is one of the destinations of the ‘journeys of hope’ carried out by several of my southern-resident interviewees. The experiences of the disease of the women encountered during my fieldwork and inserted into the institutional landscape that I have described here are part of my analysis.

In Italy, cancer is recognised as a major health problem, with the population in some areas considered more at risk (Greco, 2016a). In January 2023, the Italian government allocated €50 million for a five-year cancer plan from 2023 to 2027, with part of the investment aiming to reduce the health inequalities present in the country. General hospitals are the main providers of oncological treatments; however, cancer treatments are also provided in some IRCCSs – Istituti di ricovero e cura a carattere scientifico (Institutes of hospitalisation and care of a scientific nature). IRCCSs are institutions distributed throughout the national territory in which clinical activities are coupled with research. These institutions can have different specialisations, with some specifically focused on the research and treatment of cancer. The IRCSS Istituto Nazionale Tumori (National Tumours Institute) of Milan and the European Institute of Oncology, created in 1994 by the oncologist Umberto Veronesi and also located in Milan, have significant roles in oncology.

In analysing the experiences of the women whom I encountered in Italy, it is essential to consider two elements: on the one hand, the material difference in health resources available across Italy, and on the other hand, how this difference intersects with broader social inequalities, particularly between the north and the south of the country, and with how the population understands such inequalities, as I discuss later in this chapter.

The French system: between universalism and liberalism

The classifications of the French health system in comparative studies of healthcare systems diverge. Böhm et al. (2013) consider France as an example of a statist social health insurance system, taking into account the organisation of the French healthcare system where two levels of financial support coexist. The first is national medical insurance (Sécurité sociale), which covers a significant portion of health expenditures. However, the percentage funded varies according to the type of service, and a relevant portion remains to be paid by the patients. The second level of coverage is provided by les mutuelles, that is, insurance companies, often linked to employment, that cover part or the entirety of the remaining costs and sometimes also cover healthcare services not included in the national medical insurance (cf. Jusot, 2014). Other authors (cf. Hecketsweiler et al., 2001) consider that the French system is situated between a system based on social insurance, whose ideal type is the German model, and a universal system, the ideal type of which is the UK. Steffen (2010) defines the French system as a liberal universal system because it is, indeed, characterised by an important role of private non-profit organisations, as in Germany, but the co-presence of a system of reimbursement and the strong development of complementary insurance makes the French system different from universal systems (such as the Italian system, as we have seen above). In France, the ‘mutual benefit societies, which dominate the market for complementary health insurance, are a gray area between the public and private sectors’ (Steffen, 2010: 361). Medical professionals working in what is known as ‘sector II’ play an important role. In the 1980s, a reform of the convention between the doctors and the healthcare system was the basis for the creation of a dual sector:

Physicians choosing to be part of this group could, and still can today, freely increase their fees, with social security refunding the patients only up to the sum set by public authorities.

As we will see later in this chapter, the patients I met moved through the system using different strategies and combining in different ways the options available. The majority of them had treatment in public hospitals and facilities. A very limited number of patients choose to receive their treatments in the private sector paying out of their own pocket, although the total or a portion of those fees could be covered by a private health insurance, if the patient had one. Different French health insurances (mutuelles) can cover different types of health expenses and, as the type of the insurance is often linked to the patient's place of work, this stratifies further the capacity to pay. Several patients who decided to undergo a breast reconstruction did so in a private facility, as the waiting lists for this kind of operation are usually quite long and the availability of some specific techniques might be patchy (see Chapter 4). Some patients were covered by a good health insurance, but others were not, and in order to fund their breast reconstruction they had to for it themselves; some asked for a loan to do so.

If we look more closely at the cancer services available in France, an important distinction exists between the Centres de lutte contre le cancer (CLCC – Centres for the fight against cancer) and the Centres Hospitaliers Universitaires (CHU – University Hospital Centres). The former are organised around so-called ‘transversal’ oncology, the latter around ‘organ oncology’. In the CLCCs, the disease approach is transversal and transdisciplinary; linked to the idea of cancer as a condition that ‘transcends the organ’ (Tursz, 2004: 30), this vision extends to taking into account the global well-being of the patient, including post-disease follow-up, psychological well-being and palliative care. A form of holistic support is also offered in university hospitals. The CLCCs had a central role in the management of cancer until the 1960s. Then, between the 1970s and 1980s, the CHUs took on major importance. From the 1990s, thanks to several factors, including the development of research and the partnership with the League against Cancer, the CLCCs regained a predominant role in the treatment of cancer (Castel and Friedberg, 2010; Sifer-Rivière, 2012). The interviews which I conducted in France showed that the first medical professional whom women contact when they find a suspicious lump, or seek information about breast screening, is often the GP or the gynaecologist. If further tests are needed, these types of doctors can refer patients to a specialised centre, and this might be a CLCC or a CHU. The patients whom I met in France were treated in both types of facilities, and their opinion of the quality of care received did not seem to be related to the nature of the facility (CLCC or CHU) but, rather, to the approach of the medical staff.

In the different institutions, patients can have a first contact either with a surgeon or with an oncologist. In the French part of my research, I focused on the Île-de-France region, where almost all of the patients interviewed lived. Île-de-France is one of the wealthiest areas in France, and the population can generally have access to high-quality establishments and services. However, in France, like in the UK and Italy, geographical disparities in healthcare provision exist, and they seem to develop along the centre–periphery axis.

Authorisations and cost of oncological drugs

The panorama of oncological therapies since the 1980s has seen the inclusion of numerous new treatments (see Chapter 3 for more details), and a considerable part of them are intended for the treatment of breast cancer. One of the salient features of the new drugs is their high cost. Historically, the UK has been among the countries where pharmaceutical companies had relative freedom in establishing the price of new drugs, while in France and Italy the prices have been negotiated. In the UK, the Pharmaceutical Price Regulation Scheme defines the limits to the price of drugs in relation to capital investment; the NICE evaluation then decides whether the price/effects relation justifies the coverage of the cost of the new drug. The result is a higher incidence, when compared to France and Italy, of non-coverage of new drugs (see Jommi, 2015). To limit the negative impact that this situation can have on cancer patients, in 2010, the UK government introduced additional funds dedicated to the purchase of oncological drugs, the Cancer Drugs Fund (CDF), which is managed on a local level. In 2014 the nature of the CDF was modified, the use of these funds was aligned with the NICE guidelines and the role of the fund is now mainly to offer access to treatments for which the NICE assessment has given uncertain results. According to some commentators, although the CDF has been the result of strong public and political pressure to align the UK with other countries of the Global North in terms of access to treatments, the results it has produced in terms of improved survival are minimal because ‘[t]he majority of CDF-approved indications have been based on studies that reported minimal to no benefit in survival’ (Aggarwal et al., 2017: 1746). Another essential element that characterises the UK is that from 2020 onwards the country is no longer a member of the EU. One consequence of Brexit is that the British regulatory agency, the Medicines and Healthcare products Regulatory Agency (MHRA), is no longer under the remit of the European Medicines Agency (EMA). In 2022, the MHRA approved eleven cancer drugs, a number very close to the twelve approved by EMA and US Food and Drug Administration in the same period, so the approach to new drugs in the UK seems to be still aligned with that of other countries. However, it is difficult to predict how this new situation will affect future decisions regarding the approval of new drugs in the UK (Lancet Oncology, 2023).

In France and Italy, new drug prices are negotiated with the regulatory institutions and the drugs are classified according to their innovativeness (the improved results in trials when compared to the drugs currently used). However, in France, innovativeness is established separately from the negotiation itself and influences both the market price (in a logic of higher return on invested capital for highly innovative drugs) and the part of the cost not covered by health insurance. The French system is generally considered generous and has rarely attracted public criticism as NICE has (Drummond et al., 2014); however, the constant increase in the prices of oncological drugs is considered a problem for the stability of the reimbursement system (Guillot, 2017). Despite different evaluation mechanisms between the UK and France, there are indications that a more stringent evaluation of the benefits of new drugs is also beginning in France (Drummond et al., 2014). In Italy, the assessment of innovativeness and the negotiation are conducted by the same authority (Agenzia Italiana del Farmaco/Italian Medicines Agency), which has more discretion in negotiating the final price. For Italy, the cost of cancer drugs also represents a significant and growing part of the overall medical expenditure. It has been suggested that more stringent criteria should be introduced to define what drugs represent a relevant therapeutic innovation so as to reduce the financial pressure on governments, especially in countries like Italy, that in the last years have tried to reduce their expenditures (Andria et al., 2013). Several medical professionals whom I met during the fieldwork also questioned the long-term financial sustainability of targeted therapies.

Among the proposed solutions is the use of biosimilar medicines, biological drugs similar to an original one, the patent of which has expired. Biosimilars are not a perfect replica of the original treatment, but they generally offer the same results with reduced costs. Since 2004 the EMA has had a regulatory framework for biosimilars, and European countries have approved the highest number of biosimilar drugs in the world (Patel et al., 2018). However, this seems to be a solution that can only partially contain the problem of the increasing cost of anti-cancer therapies. Biosimilars are based on much larger molecules than traditional generics, and efforts to reduce the costs are hindered by the complexity of the approval process and the original developers’ claims to ownership of development data even after the patent on the drug has expired (Greene and Riggs, 2015; Greene, 2018). Moreover, one of the main problems, as we will see later, is the incremental nature of the benefits brought by the new drugs (Bouvenot, 2018). The presence of new and increasingly expensive drugs impacts on not only public finances but also the everyday management of disease by medical professionals, and patient experiences. As we will see in Chapter 3, this situation has a significant impact, especially in the case of breast cancer, for which numerous treatments are available.

Assemblages of treatments and navigating healthcare systems

The organisation of the different healthcare systems presented in the preceding sections allows us to understand better the similarities and differences between the three countries. One of the ways in which different forms of healthcare organisations can shape patients’ experiences is by defining how the patients move from one treatment to the next and whether and how they move between facilities and specialists. ⁵ These experiences can be understood through two different approaches, although with significant overlaps between them.

The first approach is to consider the practices of navigation of the healthcare system: what the patients need to do to access the different diagnostic and treatment services. Navigation can be extremely difficult in low-resource contexts (e.g., Molina and Palazuelos, 2014) or for categories excluded from healthcare, such as the uninsured or under-insured in healthcare contexts without universal coverage (e.g., Getrich et al., 2018) or categories of migrants without the right to healthcare (e.g., Larchanché, 2012). Navigating healthcare systems can also be difficult for groups subject to frequent discrimination, such as trans people (Edmiston, 2018). However, even when healthcare resources are available, and patients have a right to access them and are not discriminated against, navigating healthcare systems involves significant work that can influence the illness experience. Working on rural Missouri, Hunleth and Steinmetz (2022) have argued that such experiences should be understood as social navigation (Vigh, 2009), i.e. as the encounter between a dynamic social context of healthcare provision and conditionality of access, and patients with their own fluctuating resources.

The second approach includes considering the type of mobility: patients have to physically move to reach the place in which they receive diagnosis and treatment, and often the different steps can be in different locations. International movements for health reasons have attracted the most attention, and medical travels or medical migrations have been explored in a large number of works (e.g., Kangas, 2002; Whittaker et al., 2010; Roberts and Scheper-Hughes, 2011). Several analyses of the phenomenon (Sobo, 2009; Whittaker et al., 2010; Roberts and Scheper-Hughes, 2011) have explored the social inequalities and individual experiences of suffering characterising medical travel and have produced a nuanced picture of the phenomenon that contradicts the idea that people moving abroad for health reasons are only medical tourists looking for places where they can undergo elective and cosmetic procedures, paying lower prices than they would do in their country of origin (Sobo et al., 2011). However, mid-range intra-national mobilities, between regions or cities but still within national borders, also involve significant work (e.g. Vindrola-Padros and Brage, 2016; Greco, 2019), and even short-range micro-mobilities (Vindrola-Padros and Johnson, 2017), for example within the same urban area, add to the effort of navigating healthcare and dealing with an illness. Further, while healthcare is mostly organised through patients’ mobility, the mobility of medical professionals can also be important (cf. Dalstrom, 2013), as I discuss in this section, particularly in the UK. As I have discussed elsewhere (Greco, 2019; 2021), the reasons for the mobilities of patients, and the aims they pursue while navigating healthcare systems, can be understood in terms of logics. Following Mol's (2008) distinction between a logic of choice and a logic of care on the part of medical professionals, in my analysis logics can be understood as categories of aims that patients try to pursue within their therapeutic trajectories. Such logics and aims can also be understood as different approaches which patients can follow to take care of their health, for example seeking professionals and institutions they consider more capable and trustworthy (logic of cure), with whom they can have a better relationship (logic of care), or pursuing the treatment they consider most appropriate to them (logic of choice).

Organisational elements within specific healthcare systems can define the breadth of both mobility and navigation. The movement of patients across the territory is generally discouraged in the UK, which limits the choices available to patients. In the French or Italian context, patients are freer to move between provinces/departments or regions, and this extends the combinations of services and specialists that patients can use. The standardisation of patients’ pathways attempts to reduce the navigation work of patients, but such standardisation is usually more straightforward in contexts in which patients’ choice is limited through the referral system (and, in any case, some degree of navigation on the patient's part is always necessary). Further, the presence of a relevant private healthcare sector (as in Italy and France), along with the public healthcare system and the possibility of accessing experimental treatments, can complicate the navigation (Besle and Sarradon-Eck, 2022).

In my fieldwork, intra-national mobility, particularly in the Italian context, has emerged as an important component of patients’ illness experiences. As mentioned, patients in the UK have limited choice as to which public healthcare institutions they can be treated in. For some patients, the simple access to cancer screening may be limited by the GP acting as gatekeeper (Greco, 2020a). While these decisions are certainly motivated by the desire to preserve the sustainability of the medical system, they can be stressful for patients. In France, there is a wider choice, but, as my interviewees were living in the capital Île-de-France region, they had little interest in being treated in a different region, and their movements were intraregional, often between private and public facilities.

As discussed above, in Italy, territorial inequalities are one of the main factors structuring patient mobility (Greco, 2016a; 2019). Differently from other contexts in which cancer treatments are available, but concentrated in specific regions (e.g. Vindrola-Padros and Brage, 2016), in Italy the standard range of treatments for breast cancer is available across the national territory. Despite this, several interviewees moved to another city or region, especially for their tumourectomy or mastectomy, rather than undergo the operation at the closest hospital offering cancer treatments. It is important to underline that internal mobility to obtain health services is a phenomenon affecting not only the southern regions but also the northern regions. What changes is the type of mobility: in the regions of the north, movements are mainly between neighbouring regions.

The most common logic behind such mobility was a logic of cure: patients were looking for institutions and medical professionals that inspired more confidence, attempting to improve the outcome of their treatments (Greco, 2019; 2021). I have already discussed how the geographic and symbolic inequalities linked to the southern question are a major structuring dimension of the Italian healthcare system and how they fuel health-related mobility within the country, particularly from the south to the north. The interviewees whom I met in Italy gave different meanings to their mobilities. I met patients both in the north (Emilia-Romagna) and in the south (Apulia) who had had part of their treatments in a different city or region. However, for the interviewees in the south, moving for treatments was considered ‘normal’ and part of consolidated practices, while it was more unusual for the interviewees in the north. One of the consequences was that the same distance in kilometres (for example, from one province to another) was described as ‘having moved’ by interviewees in the north, and as having been treated locally by those in the south, for whom only ‘going north’ was considered proper mobility. Further, the interviewees in the south who stayed close to home to be treated often discussed the advantages and the capacities of the local doctors, as they felt they had to justify their choice (Greco, 2019). The case of south–north mobility in Italy shows how internal inequalities in healthcare – even when they do not impact on the availability of specific treatments – or ‘postcode lotteries’ can significantly shape illness experience, especially when intersecting with wider social inequalities and territorial stigma. Along with the logic of cure, however, my interviewees in Italy, and more so in France, presented a second logic: to find not only a capable doctor but also one they could talk with and who could give them attention and respect – a logic of care (Greco, 2021). ⁶ In the case of French interviewees, the micro-mobility between different institutions, including both public and private ones, was also driven by the logic of choice (Greco, 2021), in particular, to access specific reconstruction techniques.

In the UK, while the referral system limited patients’ mobility, there was still something similar to a managed mobility, both of patients and of medical professionals. The organisation of cancer treatments was more often decentralised: while diagnosis, surgery and radiotherapy were concentrated in a smaller number of hospitals, chemotherapy teams were posted from specialised institutions to a number of hospitals that otherwise did not have an oncology department. In that way, patients could limit their micro-mobility, undergoing closer to home a part of the patient pathway that entails several appointments. As Sandra, ⁷ a British nurse, explained during the interview:

For patients, navigating the healthcare system was linked to micro-mobility and, in some cases, to mid-range mobilities, but it did not stop there. Having collected interviews relative to different contexts, and in a number of cases with experience going back several years, I encountered instances in which making the link between the different steps in the diagnosis and treatment was entirely left to the patient. Claudia, an Italian patient diagnosed with breast cancer at a very young age, told me that after the diagnosis, the only indication she had received was to contact the oncology department, and she recalled that the lack of a clear pathway had increased the anxiety related to the diagnosis:

As emerges from this excerpt, Claudia built a personalised and interregional treatment pathway based on the advice she received from medical professionals and friends. As mentioned, patients in Italy have a greater freedom to move, as compared to the UK; however, the downside is that the responsibility for organising this personalised pathway falls on the patients and their families, or, as in the case of Claudia, their friends. The opposite of such an approach are structured patient pathways, which standardise the steps to take, depending on the patient's profile, as well as the location in which each diagnostic, treatment and follow-up should occur. Internal movements are increasingly codified in standardised pathways, especially in the UK; however, more complex situations, such as those of patients with metastatic breast cancer, are more difficult to fit into a standardised pathway. Viney and colleagues (2022) have shown how, from the point of view of breast cancer services, the segmentation of treatments, innovations in treatments (and the delay in incorporating them fully into protocols and pathways) and lack of capacity in specific services mean that medical professionals need to tinker actively so that patients can complete their pathways. Literature focusing on other types of cancer (e.g., Llewellyn et al., 2018, on brain cancer) has further shown how the patient pathways are often approximations that do not capture the complex trajectories that patients actually follow.

I met some interviewees for whom the diagnosis of metastasis, among other more important issues, also meant changing medical professionals and losing the established points of reference. Camilla, a British patient in her early forties who had received a diagnosis of metastatic breast cancer several years after her diagnosis of early-stage breast cancer, said that for the metastatic disease she was treated not in the breast care unit but in general oncology, and that the change was very difficult for her:

Camilla's experience shows the limits of a healthcare pathway that can work if there is a clear sequence of treatments for a patient to follow, as in the case of early-stage breast cancer. But the path for patients with metastatic breast cancer is more complex and less straightforward, and patients can feel isolated as less support is available for them.

The search for innovative treatments, whether through clinical trials or through ordinary use of newly introduced (and not always fully approved for public coverage) drugs, required the patients, as well as their treating doctors, to combine different options. ⁸ In France and Italy, the possibility of changing medical professionals or institutions, discussed above, also brought complex bricolage-assemblages beyond the standardised pathway. Finally, the elective component of breast cancer treatments, breast reconstruction, brought a significant complexity to the navigation of the healthcare system. Among the interviewees whom I met and who underwent reconstruction, especially in France, several navigated complex choices between different available reconstructive techniques. In many cases, this also involved a search, often prolonged, of institutions that offered the specific technique and surgeons who were both able and willing to use that specific technique for their case (Greco, 2020b). In some cases, the navigation and the negotiation did not apply only to the elective reconstruction, as I also met patients who struggled to obtain a diagnosis, especially when they suspected a relapse or a metastatic development (Greco, 2020a).

The aspects discussed here show some of the different assemblages linked to breast cancer. While the standardisation of treatments connects the patients’ bodies with specific organisational schemas, gaps and rigidity in the actual implementation of the pathway (organisational assemblages) and patients’ own initiatives to pursue a desired outcome produce further bricolage-assemblages. In these cases, patients assemble their treatment trajectory, either to fill in blind points in a pathway or to seek specific results. In both cases, patients further need to mobilise different forms of capital – cultural capital to decipher information; social capital that can help reach specific medical professionals and/or help from one's personal network; economic capital to access techniques that come with an individual cost, as well as to manage costs associated with micro-mobilities.

Conclusion

Marchesi (1999), in his analysis of Caro Diario, underlines how, in Medici, the detailed narration of the facts does not show the ‘achievement of an order’ and, the critic continues, the chapter ‘remains a path between discrete events, between data of a reality that seems to escape any definition’ (Marchesi, 1999: 79). The choice not to transform the story into a ‘progressive account’ illustrates the disorientation with which patients often move within the medical system. In this chapter, I have shown how disorientation is an element that characterises the experience of many patients, not only in Italy but also in France and the UK. Creating standardised healthcare pathways is only a partial response to this disorientation; a fundamental element influencing how patients navigate the medical system is the resources available to patients (as we will see also in Chapter 3). In the US, where health insurances dominate the for-profit healthcare system, a ‘low health-insurance literacy’, that is, a limited knowledge of how to navigate the insurance system, can negatively impact on health outcomes (see Williams et al., 2020). In the countries I have studied, private insurances are significantly less present or play a less important role. However, while the British, Italian and French healthcare systems are still universal, this chapter has discussed the presence of different forms of privatisation in these three countries. In Italy, there is a strong integration between private and public services. In France, the presence of medical insurances can push some breast cancer patients towards the private sector, in particular for breast reconstruction. The NHS is also gradually creating separate routes for patients willing to pay (see also Chapter 3).

Moreover, universal systems are not necessarily easy to navigate, and the availability of financial resources and the opportunity to learn about the functioning of the healthcare system were also crucial for the women I interviewed. In this case, the resources that patients employ are varied. In Italy, they moved along a north–south axis of the country, trying to circumvent the actual or perceived disparities between the south and north. However, many women also moved between regions to consult different doctors and try to put together therapeutic pathways that met their needs. French patients also moved between different institutions, often combining public and private provision. British patients also implemented, as far as possible, forms of mobility and re-assemblage of care through bricolage. Healthcare systems, already the product of global and local organisational assemblages of biomedical knowledge (Collier and Ong 2007; Ong 2016), require a different kind of assemblage on the part of patients to navigate and access the different treatments available. These bricolage-assemblages of knowledge and information, and rearrangements of the available care, serve mainly to overcome the limitations of systems increasingly subject to cuts.

In 2020, following the acute phase of the COVID-19 pandemic, healthcare systems experienced great strain. Patients who started their cancer treatments with months of delay or had difficulties contacting overworked professionals and congested facilities have attracted public attention. The problems that exploded forcefully during the pandemic were not new. They had already emerged in the stories of the patients whom I met in the decade covered in my research projects. It is difficult to say how these problems will be addressed, whether European universal healthcare systems will see an increase in resources to maintain their universal approach, or if policy decisions will accelerate the already existing forms of privatisation, thus aligning European universal healthcare systems with the US model, as Roderick and Pollock (2022) suggest. What seems clear is that learning how these systems work is pivotal for patients in Europe as well. This is an often invisible work that adds to the heavy burden of dealing with cancer, negatively affecting the lives of patients. As I will discuss in the next chapter, public discourses are an essential factor in shaping the landscape of breast cancer. I will show, in particular, how patients respond collectively and individually to the organisation of treatments and the cultural discourses about breast cancer.