Pharmocracy, bureaucracy, advocacy: Three studies of global health
In 2016, UN member states ratified the Sustainable Development Goals, including a commitment to “End the diseases of HIV, tuberculosis, malaria, and neglected tropical diseases” by 2030 (UN General Assembly 2015). But a recent series of investigative reports has highlighted the many financial, political, and logistical challenges that may make reaching that goal impossible (Garrett 2017, Cohen and Jia 2018). Now three new anthropological studies explore this ground in diverse contexts from India to Lesotho.
Global health, in the eyes of its champions, shifted from an emphasis on bilateral aid by wealthy countries to developing countries towards a more horizontal set of transnational partnerships that address ill-health wherever it occurs, and that recognizes the mobile nature of diseases. Global health also explicitly takes into account the underlying social determinants of health, such as gender inequality, poverty, environmental factors, and other barriers to health services. These transnational partnerships have produced global strategies to progress on infectious diseases, and with them new metrics, such as the Sustainable Development Goals (SDGs). The SDGs aim to channel focus in an increasingly globalized landscape. By piloting interventions in one setting, and accumulating evidence that can be used to inform normative guidelines, global health agencies promote the transfer of proven interventions and approaches among a variety of contexts. Global health finance agencies, such as the Global Fund to Fight AIDS, TB and Malaria, invest in the programs approved as “country-owned” national strategic plans, including the interventions scientifically proven to have impact and recommended by these agencies. Data help to keep all these initiatives on track, which are gathered and reported by countries and analyzed by global experts.
At least, that is how it is all supposed to work. But this is a picture of governance that diplomatically avoids confronting power, the historical legacy of colonialism, and the powerful shaping role played by financial interests, such as large pharmaceutical companies. In recent years, scholars have increasingly looked at global health with a critical eye, interrogating the unequal power relationships that underlie failures and gaps, and drawing on human rights standards to argue for global health approaches that also take into account structural inequalities. Jonathan Mann was one of the first of these advocates: both in his edited volume, Health and Human Rights (1999), and in his work at WHO and UNAIDS, he strongly asserted the interdependence of public health and legal rights. Paul Farmer’s pivotal Pathologies of Power (2005) sets out a stark analysis of how poverty and marginalization produce ill health, asserting that abuses of economic and social rights, such as the right to health, are closely linked to abuses of civil and political rights. A literature has grown up in the ensuing decade and a half, led in part by the work of UN Special Rapporteurs on the Right to Health, that explores the interdependence of politics and health, especially in regards to HIV and human rights (UN Special Rapporteur on the Right to Health 2013; Booth et. al. 2013; Global Commission on HIV and the Law 2012; Jurgens et. al. 2010; Shannon et. al. 2015; Schwartz et. al. 2015).
On a parallel track to this somewhat positivist and legally-driven approach to power and health governance, medical anthropologists have interrogated how the rapid scale-up of HIV programs have distorted politics and health systems. This work builds on a longer tradition in anthropology that explores the politics of aid, especially health aid (Chan 2015, Ferguson 1994, Redfield 2008, Scott 1998, Adams 2016, Easterly 2006, Farmer 2005, Marx et. al. 2012, Rowden 2009). Anthropologists have also highlighted subjectivities produced in global health governance and the construction of value in the context of health and science (Nguyen 2005 and 2010, Redfield 2008). At the same time, some anthropologists have explored how activists have shaped these dynamics and discourses, sometimes drawing on international rights norms (Chan 2015).
The three studies examined in this review take this work a step further. Kausik Sunder Rajan’s Pharmocracy: Value, Politics and Knowledge in Global Biomedicine (2017) and Susan Craddock’s Compound Solutions: Pharmaceutical Alternatives for Global Health (2017) both look critically at the powerful role of the pharmaceutical industry: the former focusing on the harmful impact of the powerful pharmaceutical industry on developing countries, and the latter at a small beacon of hope represented by new partnerships that are effectively challenging prevailing market dynamics that shape treatment access for people with neglected diseases. Nora Kenworthy’s Mistreated: The Political Consequences of the Fight Against AIDS in Lesotho (2017), a rich ethnographic study walking in James Ferguson’s footsteps, looks critically at the misshapen domestic politics produced by global health finance. All three books usefully probe at gaps in the field, thinking critically about the emergence of global actors and markets, how domestic systems of law and governance may be failing to effectively regulate these private interests, and about the impact of activism.
Pharmocracy is the most theoretically ambitious, but the least ethnographically grounded of the three. Sunder Rajan gives us the word “pharmocracy” to describe the merged political and financial dominance of the multinational pharmaceutical industry. His research site is India, but his target is the Euro-American pharmaceutical industry, aka Big Pharma – and perhaps more broadly, globalized capitalism.
His first two chapters focus on painting a compelling picture of the multivalent crises facing the international pharmaceutical industry, patients in developing countries, and the domestic pharmaceutical industry in India. Subsequent chapters examine these issues through four case studies. The first of these cases studies examines the tragic deaths of young girls during an HPV vaccine trial; the second is the denial of a patent for an anticancer drug, Gleevec, to Novartis in 2006; and the third examines Novartis’ philanthropic drug donation program for Gleevec. The author concludes by discussing the history of Cipla, a leading Indian pharmaceutical company once led by Yusuf Hamied, a legendary champion of treatment access in India. Civil society organizations have played an important role in contesting patents claimed by Big Pharma, and in important litigation around the right to health more broadly in India; relationships between civil society and Indian generic firms have been complex, but in some cases have included close alliances.
Of the three books, Sunder Rajan is the only one explicitly engaged with the law. He does not have a section that sets out his methods, but they do not appear to include ethnographic research. Rather, he draws largely on archival research, including analysis of court cases, letters, meeting minutes, and parliamentary reports, as well as extensive quotes from interviews with both Yusuf Hamied and Raghunada Rao, a hematologist involved with the Novartis philanthropy program. The absence of the voices of families or others directly involved in the HPV vaccine trial does leave a gap, and the narrative becomes a largely top-down, expert-driven lens on the case studies presented. While the voices of non-experts would add much, the argument Sunder Rajan presents is a compelling one.
As he persuasively describes it, the pharmaceutical industry’s past profitability was built on “a handful of blockbuster drugs” that made over a billion dollars a year (Sunder Rajan 2017: 39). However, most of the “low-hanging fruit: natural products that could be developed as potential therapeutic molecules” have already been developed, and there are few new blockbuster drugs likely to survive the long and difficult development pipeline (ibid.: 40). Thus, control of intellectual property for those drugs becomes ever more essential to pharmaceutical companies. Many of these drugs now face the “patent cliff” – the expiration of their patents – leading pharmaceutical companies to engage in ever more aggressive moves to maintain control and protect their profit margins. This creates a “monopolistic tendency that is enforced through patent protection” (ibid.: 43). The transnational pharmaceutical industry is instituting “forms of governance across the world that are beneficial to its own interests” (ibid.: 6), including through development of normative guidelines, managing clinical trials, lobbying, litigating, and using all the tools at its disposal to shape intellectual property regimes to uphold corporate interests.
Sunder Rajan’s theoretical approach is grounded in Marx and Gramsci, emphasizing how power is exerted through control over “whose knowledge comes to count as valuable and authoritative, where, and through what kinds of mechanisms” (ibid.: 29). For Big Pharma, the lack of a steady pipeline for drugs creates pressures on profitability. Because only a handful of drugs generate meaningful profit, intellectual property is critical, including the intellectual property acquired through mergers and acquisitions. This in turn requires the industry to pressure Americans to consume more drugs, and on the industry to create and dominate new markets, while reducing the cost of clinical trials by outsourcing them to the developing world: “India has cheap, bioavailable bodies” (ibid.: 64).
Sunder Rajan finds that the economy of clinical trials “creates new forms of labor, especially the labor of experimental subjectivity” (ibid.: 73). Health itself “maps onto the various labor economies” and becomes “the locus of value generation” (ibid.: 73). His review of the HPV trial finds numerous ethical issues but no accountability (ibid.: 133). In Novartis’ suit against India’s use of TRIPS flexibilities, the Supreme Court upheld the denial of a patent in 2013. His depiction of Cipla as an advocate for nationalist industries and universal treatment access is poignant and sympathetic, but dated, as it refers more to the institution under Yusuf Hamied, who retired in 2001 (ibid: 231).
One of the most striking findings, for me, centered on the investment by pharmaceutical companies in patient advocacy groups to promote new medicines. As Sunder Rajan describes, this funding was coupled with data collection about patients by Novartis, which he argues “can itself be considered a form of clinical experimentation” (ibid.: 223).
Sunder Rajan sees Big Pharma as undermining legal regimes by bending them to its collective will in ways that ensure continuing domination and control. He relies heavily on Gramsci to paint this picture, which in the end shows pharmaceutical companies as functioning nearly as rogue states. However, while there is no denying the power wielded by the institutions he describes, their influence does not quite rise to the level of Gramsci’s hegemony, given the active resistance to, marches against, and litigation of pharmaceutical companies by Indian civil society organizations such as the Lawyer’s Collective, as well as the Asian Pacific Network of People Living with HIV (APN+), Médécins Sans Frontières, and others.
Likewise, Craddock’s research for Compound Solutions: Pharmaceutical Alternatives for Global Health shows us another alternative that aims to shift the market-driven dynamics Sunder Rajan depicts. Her focus is not on legal regulation, but rather on emergent forms of new advocacy. Craddock’s research included fieldwork in two product development partnerships (PDPs) that aim to develop new drugs for tuberculosis: the Global Alliance for TB Drug Development (TB Alliance), and Aeras, a nonprofit that develops new vaccines. Craddock draws on six years of ethnography, including eighty or more interviews with a variety of actors, to explore how these and similar agencies aim to create new incentives and structures to change pharmaceutical production: PDPs are “forcing a shift in the ontological mooring of today’s market-driven neoliberal pharmaceutical industry” (Craddock 2017: 5) by promoting a more humanitarian model of pharmaceutical production.
Such a model is urgently needed in tuberculosis, a disease of poverty that is one of the leading killers in low and lower-middle-income countries, but one that is still treated using old tools. The concentration of TB among the poor, and the many competing diseases facing developing countries, means the market does not offer enough of a profit to entice Big Pharma to invest in developing new medicines and tools that could save more lives. Research is underfunded, and even where new possibilities exist, they “languish in the pipeline” due to lack of funding to develop them (ibid.: 14).
In response to this gap, and the growing mobilization of NGOs and governments to press for more attention to this neglected disease, Aeras and the TB Alliance have developed approaches to working with institutions and agencies, developing clinical trial sites, negotiating with pharmaceutical companies and governments, finding solutions to bottlenecks, and advocating for faster progress. Craddock’s concise study begins with an overview to the complex landscape of agencies and partnerships, and explores how PDPs work collaboratively to promote innovation and how they navigate the complex ethics of clinical trials in developing countries. She concludes with some provocative questions about whether the success of PDPs might have broader implications for pharmaceutical production in the current context of global inequality.
Craddock’s picture is, thankfully, a modest point of light. She shares Sunder Rajan’s critical view of the expanding patent regime as inhibiting new research and protecting profits, and she especially highlights how problematic the cost of treatment has become for persons affected by neglected diseases in the context of growing global income inequality (ibid.: 17). However, Craddock’s focus is on a neglected and marginalized area of advocacy that has recently been re-energized by new global advocacy, and her book reflects that emergent movement. She is especially interested in how this newer advocacy is producing innovative initiatives that work in the liminal space between the for-profit and not-for-profit/academic sectors, and how they navigate between these sectors to unblock the bottlenecks to progress development of new treatments.
Craddock paints a hopeful picture of TB Alliance and Aeras as innovative nonprofit partnerships that create horizontal alliances between university researchers, donors, biotech firms, pharmaceutical companies, and global health agencies to foster the development of new vaccines and drugs for tuberculosis. Because the cost of developing new drugs is so high, developing them and bringing them to the low-income people who are most vulnerable creates multiple layers of challenges – incentives and bureaucracies must be broken down by the persuasions of these two agencies. TB Alliance and Aeras use a variety of strategies to cajole, encourage, and pressure companies to do this work, and to keep the drugs affordable and accessible. Craddock calls this new domain “humanitarian pharmaceutical production.”
Her core argument is that these organizations are not only innovating drugs, but also expanding and altering “the social, political, logistical and scientific fields pharmaceutical developers typically occupy” (ibid.: 5). She wonders whether this could help to reconfigure incentives and structures in mainstream pharmaceutical production. While PDPs were not created to change capitalism, she acknowledges, “they are doing so in their own right by redirecting logics of production through the altered stakes and apparatuses of humanitarian conduct” (ibid.: 30). One suspects that Sunder Rajan, looking at the profit motives driving Big Pharma’s Machiavellian machinations in India, might be less hopeful. That Sunder Rajan’s picture is so bleak while Craddock is more fundamentally hopeful may in part owe to the parts of the industry each is looking at: Sunder Rajan is describing the domination and control of an industry over its big-ticket items, while Craddock is examining new mechanisms at work in areas where profits are likely to be low, but social capital accruing to companies could be great. It may be possible to alter the market for a disease where there is little profit motive, but changing the dynamics of larger markets poses a bigger set of challenges.
In contrast to the first two books, Kenworthy’s Mistreated is a more classic ethnography, which takes a ground-up perspective to the postmodern problem of how global aid distorts domestic politics and institutions. James Ferguson’s The Anti-Politics Machine: “Development”, Depoliticization and Bureaucratic Power in Lesotho (1994) was written about the same country, and shares many of the same preoccupations with development and local politics. Kenworthy’s study draws on ethnographic fieldwork in Lesotho over 2006-2014 in two sites: a peri-urban community clinic, and an urban garment factory manufacturing clothes for Product (RED), whose sales benefit the Global Fund to Fight AIDS, Tuberculosis and Malaria.
While her research is deeply grounded in the realities of the community and factory, like Sunder Rajan, Kenworthy also seeks to make arguments about global health more broadly. In particular, she is interested in how HIV financing and pressures to “scale up” the HIV response have created a “politics of recipiency” that distort and undermine domestic democratic governance, without fundamentally reaching many communities affected by HIV. This dynamic, she argues, makes governments more attentive to the needs and demands of international organizations than to those of their own citizens.
Kenworthy’s study begins with an examination of Lesotho’s national politics, arguing that “the vast expansion of programs, organizations and resources for addressing HIV has become a predominant feature in the social landscape of Lesotho, altering institutions, political functioning, and relations between citizens and the state” (Kenworthy 2017: 62). Her second chapter looks at how public HIV campaigns have focused on individual responsibility for preventing transmission, while these initiatives neglect structural inequality that “often bred such vulnerability” (ibid.: 73). The third chapter examines the essential front-line work done by community-based organizations in the HIV response, but also how little funding reaches these groups, while their marginalization from large-scale HIV responses is reinforced; this is a message that it is reinforced in the fourth chapter, where Kenworthy shows a breakdown in the social contract, replaced by citizen reliance on and engagement with temporary, transient NGO projects. A bleak fifth chapter starkly shows the multiple unintended, and harmful, consequences of the “social responsibility” program at the Product (Red) factory. Kenworthy powerfully uses her fieldwork to demonstrate the corrosive effects of big aid on a small country.
While Sunder Rajan and Craddock were concerned with the pharmaceutical industry, Kenworthy is more interested in the programs that procure their products, and particularly how the discourses and machinery of development aid has undermined national legal systems and community power. In the past two decades, institutions like the Global Fund and bilateral aid programs such as the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) have promoted rapid increases in investment in national HIV programs, especially in countries with very high HIV prevalence in Sub-Saharan Africa. This has created a “vast expansion of resources, programs and policies to address HIV/AIDS globally” (ibid.: 2).
While these programs — and the UN agencies they partner with — are promoting their success in millions of “lives saved,” Kenworthy views them from the perspective of the forgotten parts of the country: the “social landscapes of labors unrecognized, needs unmet, and promises unfulfilled” (ibid.: 3). As a result of global HIV investment in Lesotho, citizens went from “barely surviving…to surviving barely, equipped with the pharmaceuticals necessary to treat the disease, but having little else with which they might carve out a living and a life” (ibid.: 3). In this way, Kenworthy argues, HIV financing has been siloed from broader economic development and political reform that would address underlying social inequalities that drive ill health in Lesotho.
In 1994, Ferguson saw a richly ironic picture in which international development aid in Lesotho created an “anti-politics machine, depoliticizing everything it touches, everywhere whisking political realities out of sight, all the while performing, almost unnoticed, its own pre-eminently political operation of expanding bureaucratic state power” (Ferguson, 1994: xv). Kenworthy does not see much progress in the intervening two decades. Kenworthy argues that through the logic of scale-up, global HIV financing is similarly supporting corrupt governments, existing inequalities, and dominant power structures. The rush to global scale-up distorted national institutions and policies in order to rewrite the social contract, and not always for the better: “they changed the kinds of responsibilities that constituted citizenship” (ibid.: 19), widening Lesotho’s “democratic deficits.” Instead of increasing government accountability, these projects accustom local citizens to “temporary engagements, unexpected disappearances, [and] a paucity of information about projects operating in their midst;” people who might otherwise mobilize to get living wages are taught to subsist on per diems and free lunches (ibid.: 55).
In part, Kenworthy blames the biomedical competence discourses of HIV, which emphasize a neoliberal model of individual responsibility for “choices” that result in HIV transmission, instead of addressing the wider inequalities that fuel transmission to people living in rural and urban poverty. These strategies of “empowerment” shift individuals into roles as implementers of programs, rather than as engaged citizens who could shape policies and take political power. In essence, she sees these campaigns focusing on very narrowly construed and sterilized forms of empowerment: “Empowerment here and elsewhere created expectations that individuals could somehow control their vulnerabilities, while the initiatives did little to address the structural conditions and broader social injustices that often bred such vulnerability” (ibid.: 73)
Kenworthy is similarly troubled that little of the funding from foreign health aid reaches the community-based organizations to which local people living with HIV turn for support. Global health institutions use these organizations as “poorly paid service providers” to implement projects over which communities have no say (ibid.: 103). Overall, local citizens’ engagement with these programs only reinforces their marginalization, their distrust in one another, and in national health institutions (ibid.: 125).
In the final chapter, and perhaps most damningly of all, Kenworthy turns her attention to a factory producing goods for Product (RED); the initiative was a much-publicized site to demonstrate corporate social responsibility for HIV. Unfortunately, she finds that the same factory neglected other health and safety needs of workers, and rejected their demands for adequate pay, leaving female factory workers few options except transactional sex. She describes cars lining up outside the factory gates: “Knowing many women can no longer afford transport, men offer rides in exchange for sex” (ibid.: 174). In other words, the factory that was intended to be a model of HIV prevention and fundraising for the HIV response has become instead what epidemiologists call a “hot spot” of HIV transmission. Kenworthy’s target is not the Global Fund per se, but on a broader regime of neoliberal values that undermine and devalue domestic democracy.
All three volumes use their research to draw larger conclusions about the financing and management of global health, looking at how, within a global health regulatory landscape increasingly dominated and shaped by finance, the existing national regimes of governance fail to manage powerful players. The three books could not be more different from one another, but in their own way, each of these works makes genuinely valuable contributions to the field of anthropology and global health governance.
Sunder Rajan’s book is a compelling picture of the complex and sophisticated ways pharmaceutical companies have learned to manipulate each level of national systems of regulation in order to advance their financial interests. In his analysis of court cases, he shows how effectively pharmaceutical companies have worked to establish legal norms and normative guidelines that shape health systems and priorities for procurement; they are effectively managing global health, in certain instances, to ensure a continued market for their goods. In the process, he explores the different types of value produced along the way. In some places, his engagement with theory can sometimes float away from rigorous pursuit of an argument into more ethereal musings. That said, the vision he leaves us with of pharmaceutical companies rigging every piece of the system – guidelines, health insurance, law, philanthropy, even down to the activism – to ensure continued profits, rings true to me and to treatment access activists with whom I shared the book. This is a text that will surely be often referenced in any discussion of access to medicines in years to come.
Craddock convincingly shows how the PDPs she studies have shifted the field of pharmaceutical production, and argues that they constitute a form disruptive innovation in development aid. By modeling other approaches to research and development, they are pressing companies to
play by bottom-line rules of affordability and access, even though this is not always enforceable; they turn infectious disease research into market opportunities through emerging economy partnerships and creative financing mechanisms; and they are demonstrating even to pharmaceutical industry executives that scientific innovations are more likely to emerge from PDP models of open knowledge exchange, scientific creativity, and cross-institutional and cross-disciplinary collaboration. (2017: 132)
While the abbreviations from the TB world may sometimes make the argument challenging for non-initiates to follow, Craddock’s writing is wonderfully free of jargon and pretension. She has a clear case to make and rich data to make it with — and she lays that argument out in a logical style. Her study is on an area that is little-known, but significantly new, which in some ways makes her work the most ground-breaking of the three.
That said, Kenworthy’s book is the one I personally found myself underlining whole paragraphs of and referring to repeatedly in discussions with colleagues, activists, and policymakers working in global health. I passed it along to the Global Fund’s Fund Portfolio Manager for Lesotho, who read it in one sitting. Mistreated is a must-read for anyone working in HIV finance. This ethnographically rich contribution perfectly illuminates how major influxes of capital can distort local politics, and how donor initiatives — with the best intentions — may do lasting harm in the attempt to do good.
I did sometimes wonder how well Kenworthy’s argument about the distorting effect of global scale-up in a small economy like Lesotho’s stands up in larger countries, for instance, in neighboring South Africa, which is responsible for much of the world’s HIV burden. I was not sure how well we could understand Lesotho economics and politics without some account of the relationship between that country and neighboring larger ones, given steady flows of migrant labor and other transnational dependencies. However, these doubts never lasted for long; the unfortunate reality is that “politics of recipiency” is a term that deserves to have a much wider life and usage in global health.
To various degrees Sunder Rajan and Craddock see activists that challenge prevailing market values and demand accountability for human rights standards; Kenworthy is less sanguine. Kenworthy and Sunder Rajan are describing the destructive and disruptive impact of systems that are benevolent in rhetoric; Craddock is the only one of the three to see a resistant approach, albeit one that advocates in board rooms, not in the courts or on the streets. In contrast to Jennifer Chan (2015), who depicts transnational activism as reshaping those politics, Kenworthy sees local activists as profoundly disconnected from real power. The Global Fund’s Board includes a strong delegation of people living with HIV, including activists from Sub-Saharan Africa, so it’s not an institution entirely divorced from the experiences of communities living with HIV. This role is not addressed in Kenworthy’s work, so perhaps Lesotho activists don’t get to exercise much of that influence.
The close ties between governments and donors, and related financial pressures on the global HIV and TB response, are now reaching a fever pitch in the Sustainable Development Goals era. How much power can activists and lawyers exert to reign in and influence how funds are spent and medicines are accessed in the coming years? The answers may have a lot to do with how close the world gets, or fails to get, to the “end” of HIV, TB. and malaria by 2030.
Sara L.M. Davis, Independent scholar
Reviewed in this Essay:
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Kenworthy, Nora. Mistreated: The Political Consequences of the Fight Against AIDS in Lesotho. Nashville, TN: Vanderbilt University Press, 2017.
Sunder Rajan, Kaushik. Pharmocracy: Value, Politics, and Knowledge in Global Biomedicine. Durham, NC: Duke University Press, 2017.
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