Leah Schwartz ’16
Following the 1948 discovery of streptomycin, the first antibiotic effective against tuberculosis, domiciliary, self-administered tuberculosis treatment came to replace traditional sanatorium-based care. Amidst the global decentralization of care, the medical and public health communities faced two novel realities: the emergence of antibiotic drug resistance and the failure of many patients to fully adhere to their prescribed course of treatment. Initially conceived as independent outcomes, advances in the scientific literature linking patient non-adherence with the emergence of drug resistance resulted in the reconceptualization of drug resistance as both clinically and epidemiologically significant, and the subsequent recognition of directly observed treatment as the standard of care. This article traces the genesis and subsequent coevolution of initially distinct discourses of drug resistance and patient adherence—and, indeed, of the pathogen itself—through the advent of multi-drug resistant tuberculosis in the 1990s. By locating this evolution within twentieth century global tuberculosis policy debates, this paper argues that notions of patient adherence critically informed the nature and quality of tuberculosis treatment in programmatic settings. At the same time, recognition of structural constraints on patients’ ability to comply with treatment was either absent or largely subsumed within these discourses until the late 1990s.
This paper traces the genesis and subsequent coevolution of initially distinct discourses of anti-tuberculosis drug resistance and patient adherence through the advent of multi-drug resistant tuberculosis in the 1990s. By locating this evolution within twentieth century global tuberculosis policy, this paper argues that notions of patient adherence critically informed the nature and quality of tuberculosis treatment in programmatic settings.
Patients Who Are hard to Hold:
Compliance, Resistance, and Tuberculosis treatment, 1990-Present
“If this were a Greek tragedy, there would be no second chance. But decades after researchers developed the drugs necessary to treat tuberculosis, DOTS represents a cost-effective strategy to redress the policy failures of the past. Whether the strategy is widely implemented is a repeat test of global priorities for the politicians. Whether the right antibiotics to treat multidrug-resistant TB can be found is yet another test for scientists” (Zimmermann, 1997).
“The rise of MDR-TB in the global era is a call to return to the basis of our practice as healers: our mission is to treat the sick, not just the sick who can pay. Our mission is to treat TB, regardless of resistance pattern” (P. Farmer et al., 1998).
In April of 1993, the WHO declared tuberculosis a “global emergency,” the reasons cited for the resurgence of tuberculosis included the deterioration of TB control systems, the emergence of drug resistance as a result of “poorly managed and incorrectly conceptualized” programs, the advent of HIV, and general population growth (WHO Tuberculosis Programme, 1994). At the time, directly observed therapy (DOT) was hailed as the most effective means of promoting compliance given that many still believed non-compliance to be a significant driver of drug resistance. Unsurprisingly, then, the tuberculosis community turned to DOT in this moment of crisis. In the WHO Tuberculosis Programme’s “Framework for Effective Tuberculosis Control,” a policy document published in 1994, the authors presented the five-point strategy that would ultimately be termed the ‘DOTS Strategy’ (Directly Observed Therapy, Short Course) the following year. These five elements were: government commitment, passive case detection, standardized short-course chemotherapy with supervised administration, a regular drug supply, and finally, a monitoring system for programme supervision and evaluation (WHO Tuberculosis Programme, 1994). Importantly, DOT was but one component of the DOTS Strategy, and while the tactical naming of the strategy contributed to its widespread uptake, it also created confusion and the false perception that the DOTS Strategy centered on DOT. In this way, DOT served to conflate drug resistance with non-compliance in the public sphere; in reality, erratic pill-taking behavior associated with non-compliance only accounts for primary resistance, while environmental factors, such as crowding and poor ventilation, leads to the transmission of drug-resistant TB, resulting in secondary resistance. Despite the significance of the secondary resistance, the DOTS Strategy, at least initially, focused only on primary resistance.
In less than ten years, the number of countries implementing DOTS programs skyrocketed, from just under 10 in 1990 to 119 in 1998. In fact, the WHO estimated that by the start of 1998, 85 percent of all TB patients were living in countries with DOTS programs. At the same time, however, in 1998, it was estimated that only 21 percent of all smear-positive cases were being reported and managed by DOTS programs (Porter, Lee, & Ogden, 2002). In reflecting upon the limited worldwide expansion of DOTS during the 1990s, WHO TB experts lament that various factors were at play, including “the perceived lack of flexibility and adaptability of the strategy, and the lack of explicit reference to social support to facilitate access and adherence to treatment” (Lienhardt et al., 2012). Compounded by the rising rates of multidrug-resistant tuberculosis (MDR-TB) and the concurrent HIV epidemic, the worsening situation, thus, called for a revision of global TB policy that would overcome, among other things, those challenges that had impeded DOTS implementation, and which necessarily required greater attention to the those living in the world’s poorest countries (Lienhardt et al., 2012).
Many individuals within the TB community recognized, both then and now, that the reconceptualization of MDR-TB as a truly global threat contributed significantly to the political will and allocation of resources that ultimately helped to bring about this change. Indeed, in a landmark editorial published in 1985 titled, “Tailoring a Time-Bomb,” Dr. Michael Iseman, the chief of the National Jewish Hospital’s Mycobacterial Disease Service in Denver, Colorado, the country’s leading MDR-TB referral center, remarked: “selfishly, it is important for the developed nations to realize that they are not invulnerable to this misadventure: drug-resistant tuberculosis is appearing in these countries in increasing numbers both among immigrants from the developing world and—in lesser numbers—from indigenous spread” (Iseman, 1985). While Iseman, himself, characterized this reason as ‘selfish’, as early as 1985, he presciently captured and sought to overcome the relative apathy of the developed world. What’s more, Iseman was not the only voice calling attention to this impending crisis—he was, in fact, echoing those of others; indeed, his editorial was based on the findings of a study conducted in Peru that same year by Dr. Philip Hopewell and colleagues that revealed alarmingly high rates of treatment failure among the study group despite the fact that over 90 percent had been receiving fully supervised therapy. The research team suspected that this outcome was due to widespread cases of drug-resistant TB resulting from years of treatment within a broken National Tuberculosis Program (NTP), concluding that “the blame for the failure seem[ed] to rest with the drugs themselves rather than with their administration” (Hopewell, Sanchez-Hernandez, Baron, & Ganter, 1984).
Importantly, a significant step in addressing growing concerns occurred in 1994, when the WHO and IUATLD established the Global Project on Anti-tuberculosis Drug Resistance Surveillance (the Global Project), whose basic objective was to estimate the prevalence of drug resistance, first at the national level and ultimately globally. While the task of obtaining accurate data proved to be quite difficult, leading to problematic interpretations of the results, the Global Project went on to produce a series of alarming reports throughout the decade. Furthermore, the Global Project accompanied the release of each report with a published article in leading medical journals, thus augmenting the readership and, in turn, the impact of the official reports. Particularly convincing evidence that developed countries began to internalize this perceived threat can be found in the language used by international aid organizations and the popular press to describe MDR-TB. Indeed, in 1998, shortly after the release of the first report and publication of an accompanying article in the New England Journal of Medicine, a new term, invoking another widely-feared infectious disease, was given to MDR-TB: “Ebola with wings” (Voelker, 1998). Years later, Don Enarson, a TB Expert from the Union, would explain that “in many ways, multi-drug resistant TB is much more frightening than AIDS since you can protect yourself from AIDS by avoiding unsafe sexual behaviours. But there is virtually nothing you can do to protect yourself from TB, as the primary risk factor for acquiring TB is simply breathing” (Holme, 1997). “Fortunately or unfortunately,” unlike HIV, Jim Kim would later remark, “MDR-TB could be contracted while sitting in the first class cabin of an airline” .
As the research agendas of institutions at all levels increased in focus on anti-tuberculosis drug resistance in the first half of the decade, new information about drug resistance rates and transmission dynamics became ubiquitous. Much like was the case in the 1950s and 1960s, these changes in understanding of the nature, significance, and extent of anti-tuberculosis drug resistance were accompanied by the coevolution of discourses of patient compliance. Indeed, the advent of DOTS-Plus in 1998, insofar as it was informed by Partners In Health’s accompaniment model, marked the beginning of a dramatic departure from global TB control models that had historically ignored the role of patient agency in adherence to treatment and in health outcomes. Ultimately, though, DOTS-Plus, itself, remained limited in the degree to which it accounted for and sought to overcome structural barriers that served to constrain patient agency and adherence to treatment.
In 1987, Drs. Paul Farmer and Jim Kim, along with Ophelia Dahl, Todd McCormack, and Thomas J. White, founded Partners In Health (PIH), a Boston-based non-governmental organization (NGO) committed to delivering healthcare to the destitute sick. At that time, the team had already been working in Haiti’s Central Plateau region for several years, where they had established the Proje Veye Sante, a small community-based operation intended to provide basic healthcare to a surrounding community of landless peasants who had been displaced by the flooding of a hydroelectric dam. Centered in the Clinique Bon Saveur and operated by team of physicians, nurses, and community health workers, Proje Veye Sante sponsored a range of free services, including various clinical services, women’s health initiatives, and vaccination campaigns, among others (Kidder, 2009). Following the death of three HIV-positive patients in 1988, the research team carried out a landmark operational research study on the community-based model that would come to fundamentally inform the organization’s model of care.
The study’s results, published in a 1991 article in Seminars in Respiratory Infections, aptly titled “Tuberculosis, Poverty, and ‘Compliance’: Lessons from Haiti,” which proved that health outcomes were drastically improved by the removal of structural barriers to adherence, led the team to conclude that the concept of compliance itself was “analytically flimsy in countries like Haiti, where the poor are systematically put at risk for TB and then denied adequate care” (Paul Farmer, Robin, Ramilus, & Kim, 1991). Indeed, noting that “The hoary truth that poverty and TB are greater than the sum of their parts is once again supported by data,” the study’s authors argue that
…cultural, political and economic factors, although inevitably important, cannot be of equal significance in all settings. Whereas cultural considerations, such as the nearly universal stigma attached to TB, may very well be of overriding significance in settings in the developed world, we would argue that they are often less so in Haiti, where so many factors (initial exposure to mycobacteria, reactivation of endogenous TB infection, complications, access to therapy, length of convalescence, development of resistance, degree of tissue destruction and, finally, mortality) are determined chiefly by economic constraints (Paul Farmer et al., 1991).
Later, Farmer would summarize the results of the study in a single sentence that has been cited countless times since: “Throughout the world, those least likely to comply are those least able to comply” (Paul Farmer, 1997). In response to the study’s results, the PIH team formulated and formalized their accompaniment model of care, an outgrowth of the Proje Veye Sante. Before further explicating the model, it is important to briefly elucidate the process by which the notion of accompaniment—with its rich history tangled within different languages, disciplines, and geographies—developed, evolved, and, most importantly, became embedded in the programmatic fabric of PIH’s work over time.
In his published works discussing the notion of accompaniment, Farmer most notably cites the work of Father Gustavo Gutiérrez’s, A Theology of Liberation: History, Politics, and Salvation, first published in 1971 (Paul Farmer & Gutiérrez, 2013). Father Gutiérrez’s seminal work reimagined Catholic faith and practice from the perspective of those living in poverty; liberation theology pointed to flawed social and political structures as the cause of persistent poverty and suffering; it sought to enlist its followers in the struggle for social and economic rights; and finally, it called for the creation of a ‘preferential option for the poor’ (Paul Farmer, 2014). When Farmer finally met Gutiérrez in Peru in 1994, his work as a physician anthropologist had already been profoundly informed by insights from liberation theology. One such insight of particular relevance is the notion of accompaniment. In In the Company of the Poor, the outgrowth of a public discussion held between Farmer and Father Gutiérrez at Notre Dame University in 2011, the two men noted that they both subscribe to what they call ‘a theology of accompaniment’:
The practice of accompaniment is highly personal and deeply relational. Accompaniment of the lonely poor involves walking with—not behind or in front—but beside a real person in his or her own particular journey in his or her own particular place and time, at his or her own particular pace. Accompanying others in their struggles for survival does not have a beginning or an end, and there is no outside plan being imposed. It often means being present to terrible suffering, being thrown into chaotic circumstances, encountering unexpected problems and difficult situations with no easy solutions. And yet, accompaniment, the act of ‘walking with another’ is, in the words of Roberto Goizueta, ‘always a fundamentally religious sacramental act’ (Paul Farmer & Gutiérrez, 2013).
Although Farmer insists that PIH is a secular organization, he has always acknowledged, even celebrated, the fact that those who make up the organization draw insights from liberation theology to inform their work In PIH’s work, he explains that “Accompaniment is much more often about sticking with a task until it’s deemed completed by the person or people being accompanied, rather than by the accompagnateur” (Paul Farmer, 2011). In essence, accompaniment is the way in which PIH operationalized the delivery of healthcare as a preferential option for the poor.
At its core, then, PIH’s accompaniment model is the product of a deep and sophisticated understanding of patient agency and includes within it a package of services specifically intended to overcome identifiable barriers to adherence. Indeed, the accompaniment model acts on the basis of what other PIH colleagues called a ‘contextualized theory of non-compliance’—one that considered non-compliance “within the context of programmatic failings, as well as socioeconomic stressors that not only contribute to patient non-adherence but are also the very factors which place these individuals at risk of developing TB (Shin, Furin, & Singler, 2005). Earlier, in a publication adapted from his dissertation research on AIDS in Haiti, Farmer had further defined this process:
Their sickness is the result of structural violence: neither culture nor pure individual will is at fault; rather, historically given (and economically driven) processes and forces conspire to constrain individual agency. Structural violence is visited upon those whose social status denies them access to the fruits of scientific and social progress (Paul Farmer, 1999).
In the specific context of MDR-TB, these ‘fruits’ include “the presence or absence of monotherapy, regular or erratic drug supplies, and better or worse access to adequate care facilities (Paul Farmer, 1997). Here, too, we see links to liberation theology in a fundamental assumption of the accompaniment model. Indeed, Gutiérrez argues, “In the liberation approach, sin is not considered as an individual, private, or merely interior reality…Sin is regarded as a social, historical fact…When is it considered in this way, the collective dimensions of sin are rediscovered”; what Farmer calls ‘structural violence’, Father Gutiérrez calls ‘structural sin’ (Gutiérrez, 1973).
It is in this regard that the distinct notions of patient agency embedded within DOTS and accompaniment can be best understood. While both accompaniment and DOTS account for structural issues impeding adherence to treatment, Porter and Ogden argue that the focus of DOTS remains on the systems through which drugs are delivered and patient compliance is monitored, namely health care infrastructure and supply chains (Porter et al., 2002). This understanding assumes that with consistent drug availability and reliable health care workers, there should be no impediments to patient compliance. By contrast, the accompaniment model recognizes that structural violence intervenes in individual health at a deeper level; that more fundamental forces, including the effects of poverty, political violence, racism, and gender inequalities, serve to constrain individual agency such that barriers to adherence persist even once drugs become available. It logically follows, then, that in addition to providing TB treatment, the accompaniment model provides TB patients with comprehensive care that includes nutritional support, transportation assistance, other medical services, and psychosocial support.
Furthermore, the accompaniment model differs from previous models of TB care in the way it understands the role of the community health worker in supporting patients through treatment. In Haiti, the cornerstone of the model was an extensive network of accompagnateurs (‘one who accompanies’ in Haitian Creole) who were charged with administering DOT and long-term social support to tuberculosis patients. The accompagnateurs served as linkages between the patients, who lived in rural villages throughout the Plateau, and the staff, comprised of physicians and nurses, based out of the clinic in Cange. The fact that the accompaniment model employs the use of DOT warrants further attention, especially in light of later efforts to decouple PIH’s model from that of the WHO. Dr. Carole Mitnick, a TB expert at Harvard Medical School working with PIH at the time, understood the integration of DOT into PIH’s model as
an entry into people’s homes, it was an established way of interacting with people. But it was not an end in and of itself; the observation of treatment was really not [an end in and of itself]. It was just that in Madras and in other places, they had shown that you could do this community-based care, which fit with our model of meeting people where they needed to be reached. And, if you were going to speak a language that program officials would understand, building it around that was strategically sound…We didn’t have this civil liberties issue, I guess, because it wasn’t just about supervising people, it was because it was an entry to do more and to understand what all of their challenges were and to provide access to resources and build relationships. We just thought that was a non-issue. What was an issue was what was being made out of that relationship. That was the foundation for doing a whole bunch of other things that people really needed—where the observation of someone swallowing the pills was really the least of the worries (Dr. Carole Mitnick, 2016).
Mitnick’s reference to the issue of civil liberties is an interesting one, primarily because PIH differed in their view of DOT from other similar NGO organizations with which they typically saw eye-to-eye. In reconciling this conflict, Mitnick explains that in their own view, at least, PIH was not “carrying it out as a DOT, we were carrying it out as a visit to someone’s home every day… It wasn’t to negate the idea of supervision, it was just to integrate the idea of supervision into a much larger package and minimize it within that package” (Dr. Carole Mitnick, 2016). In explaining the transfer of the accompagnateur model to Peru, Jen Furin, who worked with PIH in Peru while still a student at Harvard Medical School during this time, echoes Mitnick’s sentiment that PIH used DOT as a channel through which to provide a more comprehensive package of services. She remembers that the PIH team asked themselves,
what is another model that doesn’t put a huge burden on patients, that is actually beneficial, and that employs local people in a job? And that, I think, is where Paul [Farmer]’s idea of the accompagnateur in Haiti came from and then we adapted that in Peru to say: here it is, this is what compassionate DOT looks like, this is what flexible, patient-centered care looks like, where the values of the sick person are put first and so you make it at a time, at a place that works for them and where engagement is supportive…And that is sort of how I saw that model come through, and I guess that in Peru what DOTS allowed us to do was really to formalize that, so instead of a bunch of nursing students meeting secretly in the attic of SES as a community of activists, all of a sudden it was…here’s a model in community-based DOT (Dr. Jennifer Furin, 2016).
Indeed, Furin clarified that the PIH team understood that patients would benefit from DOT but that it couldn’t be employed in the absence of additional support. In this way, Furin argues, the novelty of PIH’s accompaniment model “wasn’t just this community-based part, it was expanding this whole job of the health workers” (Dr. Jennifer Furin, 2016). In this regard, Jaime Bayona, who headed PIH’s efforts in Peru during the 1990s, added that the promotores in Peru would also identify and address any basic unmet needs, including adequate access to food, electricity, and water (Dr. Jaime Bayona, 2016).
In 1994, at the request of Father Jack, a priest with whom Farmer had lived during his first years at Harvard Medical School, Jim Kim and Paul Farmer set out for Carabayllo, a shantytown in the Northern Cone of Lima, Peru. Having made important progress in Haiti, the PIH team felt it had the capacity to expand; Kim was eager to take on a project of his own, and the PIH team gave him its full support. While Father Jack had intended for the program to provide the slum’s population with basic PHC services, initial health surveys revealed that there, too, many individuals were suffering from TB. Much like in Haiti, the program in Peru—later established as a formal PIH sister organization, Socios en Salud (SES)—provided both basic healthcare services and offered, through a model similar to the accompagnateur model in Haiti, comprehensive TB care to those suffering from the disease. In many ways, however, the work in Peru was uncharted territory. Firstly, in comparison to the rural, remote communities in which PIH worked in Haiti, the shantytown of Carabayllo was a densely populated slum, making it the perfect context for facilitating rapid transmission of TB. On the other hand, this same factor that contributed directly to the high rate of TB also meant that there was better, albeit limited, infrastructure, which allowed faster implementation and scale-up than the sites in rural Haiti had allowed for. Furthermore, whereas Haiti lacked any sort of formal national health program, Peru had recently been deemed a DOTS success story, its NTP frequently touted by the WHO as one of the most well-established (Smith-Nonini, 2005). Ironically, this second factor would soon come to represent a serious impediment to SES/PIH’s work.
When, just a year after the founding of SES/PIH, Father Jack died from what drug sensitivity testing (DST) would later confirm was MDR-TB, the SES/PIH team found itself not only grieving the loss of their dear colleague, but also daunted by what they believed would come next. Father Jack had never been diagnosed with TB, had never received treatment for TB, and had been symptomatic for a relatively short period of time before his death; as their research would later prove, SES/PIH had correctly assumed that there were other cases in Carabayllo just like Father Jack’s (Kidder, 2009). After building up their promotores network—the Peruvian complement of Haiti’s accompagnateur network—and securing an initial batch of second-line drugs, SES/PIH carried out an intensive treatment program, novel for its delivery of individualized treatment—informed by DST—at the community level, to an initial cohort of 53 patients in July of 1997 In the course of treating patients, SES/PIH conducted rigorous epidemiological research, gathering as much data as possible, knowing that without it, they would not be able to capture the attention of any governing body possessing the power to enact the necessary changes. Within the first year of the program, the collected data, which were published formally for the first time in the New England Journal of Medicine in 2003, demonstrated noteworthy outcomes. Among the 53 patients, only one had abandoned therapy and a study on 3,050 doses of oral and injectable medications had shown that 97 percent could be documented to have been administered properly by the promotores. Perhaps most remarkable was that while initial DST revealed that 55 percent of the collected sputum samples contained strains of MDR-TB, with resistance to an average of five drugs, the patients achieved a smear and culture conversion rate of 100 percent This data was especially important to justify their work in Peru, where second-line drugs were not legally sold and, thus, no treatment for MDR-TB was available. For these same reasons, as well as a presumed desire to uphold the program’s reputation, those heading the Peruvian NTP prevented PIH from treating any patients enrolled in the program, effectively forcing PIH to treat patients in secrecy.
“Interestingly enough,” recalled Furin, “what we realized was that in order to be able treat people on the ground, we had to engage in the global debate. It wasn’t that there was a choice because we were not allowed to be treating these patients in Peru” (Dr. Jennifer Furin, 2016). Leveraging their Harvard affiliation, particularly the support and professional network of Dr. Howard Hiatt, the inaugural chair of Harvard Medical School’s Program in Infectious Disease and Social Change (PIDSC) and former dean of the Harvard School of Public Health, PIH co-sponsored a meeting with a reluctant WHO at the Academy of Arts and Sciences in Cambridge, Massachusetts in April of 1998 (Proceedings of 1998 Meetings and Protocol Recommendations, 1999). Apart from individuals representing the WHO and SES/PIH, the meeting’s participants included leading TB experts and representatives from multilateral aid organizations, the pharmaceutical industry, and private foundations. Appropriately, in opening the second day, Jim Kim referred to the meeting as the “TB All Star Weekend,” noting that “We took on this MDR-TB project because we thought that by proving that one could do community-based treatment of multi-drug resistant TB, that we might have the opportunity to work with a room full of people like you. To actually expand resources to the populations we serve”
In a letter to Hiatt on April 15, 1997, Farmer explained that a recognition of MDR-TB as a ranking problem in TB control should be a pre-existing shared premise of the meeting’s attendees. Instead, the PIH/PIDSC team intended for the meeting to have a “different and much more limited purpose: to elaborate strategies for confronting resistant TB epidemics, and to plan at least one pilot experimental project to treat resistant TB in developing countries” (“Paul Farmer to Howard Hiatt,” 1997). More specifically, they sought more affordable second-line drugs, the capacity to carry out serial DST to detect antibiotic resistance in resource-limited settings, and the mobilization of resources to support pilot community-based programs to investigate the feasibility of individualized and standardized regimens for treating MDR-TB.
Early on, however, the PIH team received criticism from the individuals with whom they consulted regarding the meeting’s content and logistics. In response to an initial proposal letter from Hiatt, Seth Berkley, then Vice President of the Rockefeller Foundation rebuked, “How can they argue that their particular effort to address what is a legitimately terrible health problem should command resources from other worthy competing claims?” (“Seth Berkley to Howard Hiatt,” 1997) Berkley was one among many individuals who believed funding for TB to be a ‘zero sum game’, that treating MDR-TB necessarily diverted funds away from the treatment of drug-susceptible TB. Aware that others would be similarly resistant, Farmer’s subsequent communications were characterized by his intent on making common cause, even if that meant minimizing certain aspects of PIH’s initial agenda. In a letter to Diana Weil, the TB Officer at the Pan-American Health Organization (PAHO), Farmer promised that “at no point during the meeting will [they] suggest that such efforts should supersede the more central task of making first-line drugs reliably available through the DOT-S approach. ‘First things first,” as Arata Kochi had said’” (“Paul Farmer to Diana Weil,” 1998). Similarly, in his first communication with Dr. Arata Kochi, the director of the World Health Organization’s Global Tuberculosis Programme (GTB), Farmer stated that his proposed plan was to “find ways of moving new resources into community-based efforts to treat this disease, with the hope of moving such efforts under the umbrella of effective national program” (“Dr. Paul Farmer to Dr. Arata Kochi,” 1997). At the same time, however, Farmer appealed to Kochi’s interests, acknowledging that these efforts “need[ed] to be community-based and directly observed,” and that “the plan would be entirely in keeping with the goals enumerated by [his] Programme” (“Dr. Paul Farmer to Dr. Arata Kochi,” 1997). More subtly—but arguably more important—the focus on PIH’s novel use of community health workers (CHWs) became subsumed within the broader objectives of the meeting. In various drafts of the meeting’s ‘Expected Meeting Outcomes’ and agenda, an explicit reference to community-based approaches appears either once or not at all; in his comments on an early draft of the ‘Expected Meeting Outcomes’ dated to September 17th, 1997, Kochi stated that they were “too ambitious,” noting that to achieve the more limited set of outcomes he suggests, “of course, we will need to restructure the agenda” (“Dr. Paul Farmer to Dr. Arata Kochi,” 1997).
Others have written about the way in which the 1998 meeting, formally titled, “Community-Based Approaches to the Treatment and Control of Multidrug-Resistant Tuberculosis,” proved to be an important historical moment for PIH and for garnering worldwide attention to MDR-TB, more broadly (Kidder, 2009). It is worth noting, however, that PIH was not the first organization to implement community-based TB programs; indeed, several other groups were carrying out similar work in Cambodia and Bangladesh prior to, or at the same time as, PIH (“Cambodian Health Committee Activities Report,” 1997; Islam, May, Ahmed, Cash, & Ahmed, 2011). And yet, for the present discussion, this particular meeting served a most basic, albeit critical, function in providing, for the first time, a context in which the international TB community could negotiate and reconcile the dogma of DOTS with new, alternative models of TB treatment and control.
At the meeting’s start, Farmer framed the objectives of the meeting with the following questions:
The questions to be raised in the room will, we hope, include the following ones. Where is DOTS alone insufficient; that is, where might DOTS-Plus, as Dr. Kochi has just invented another brand name, where will that be most helpful? How might we best approach the control of MDRTB in settings in which there is on-going transmission and significant mortality? What is the impact in settings in which there are already substantial rates of MDRTB? The so-called hot zones signaled by the WHO, if the empiric regimens based on INH and Rif? What is the impact of DOTS on MDRTB? And, conversely, the impact of MDRTB on DOTS? Then, finally, how do community-based approaches to MDRTB differ from hospital-based approaches? How effective are they? And, how replicable?
Perhaps it was similarly because of the WHO’s risk-averse nature that the meeting’s focus on the community-based approaches was relatively limited, as evidenced by its place in a long line of additional research agendas. Furthermore, despite Farmer’s extensive published writings on the subject of patient compliance, the topic was barely mentioned by name by the meeting’s participants, with PIH opting to instead present its community-based approach—the phrase used to refer to PIH’s accompaniment model during the meeting—as a pragmatic solution with the capacity to address a set of concrete challenges in the treatment of MDR-TB. Because the meeting did not allow for the explicit negotiation of conflicting ideologies about patient agency and compliance, the resulting model, DOTS-Plus, appeared similar to PIH’s accompaniment model primarily in its technical, rather than its ideological, approach.
For the purposes of the meeting, Farmer presented PIH’s community-based MDR-TB treatment model as one that was “linguistically and situationally appropriate,” and which “relies on directly observed therapy by community health workers, rather than by health professionals, physicians and nurses. Provides in-home therapy, rather than clinic or hospital-based treatment… because in these settings is not possible to prevent nosocomial transmission” Bayona’s second message—that community based approaches could prevent nosocomial transmission—was particularly strategic in that it drew attention to the unique capacity of such an approach to protect not only patients, but also health care workers, who were at a higher risk of infection while treating patients in poorly-ventilated, traditional clinic settings.
Importantly, neither Farmer nor Bayona make explicit to the additional supportive role of the CHWs. Later, in what was perhaps the only comment implying this role, Bayona added that in Peru, the team “noted that community based responses to emergency infection threat seem[ed] to have effects well beyond the patient’s transmission events averted. The training of people involved in this support has clearly had a beneficial effect on many aspects of life in Carabayllo”
In the published account of the meeting, which was edited by members of PIH and subsequently included in a WHO official publication detailing several DOTS-Plus meetings, the authors note that the April Meeting yielded, among others, the following relevant resolutions:
Effective control of ongoing MDRTB outbreaks requires new strategies. Since DOTS-based programs remain the key desideratum for global TB control, new and enhanced programs might well be termed “DOTS-Plus.” The features of such a program are:
- Would be best initiated in settings where DOTS has been adopted;
- Must bring substantial new resources to TB control; and,
- Should incorporate community-based approaches for three reasons: to decrease nosocomial transmission, reduce treatment costs, and enhance the local community capacity.
A DOTS-Plus program based on individualized treatment of MDR-TB is a complex process. It will require:
- Linkage with a country’s NTP;
- Specialized clinical expertise;
- A surveillance component;
- High-quality laboratory support;
- An uninterrupted supply of all second- and third-line drugs; and
- Adequate personal/resources to deliver care in home or other institutions/facilities (Proceedings of 1998 Meetings and Protocol Recommendations, 1999).
Despite the relatively limited attention paid to the community-based model during the meeting, official communications reporting on the meeting outcomes nonetheless included it as a critical part of the proposed DOTS-Plus program. In a version of the meeting summary submitted for publication to the British Medical Journal, the authors noted, in reference to the implementation of DOTS-Plus, that those in attendance “resolved that efforts to replicate the successful community-based program in Peru would be one prudent way to begin” (Harvard Program in Infectious Disease and Social Change, 1998). Finally, in the executive summary of the meeting, published by the WHO, the authors reported that at the meeting’s end, “Kochi agreed that community-based disease control might also serve to strengthen the capacity of vulnerable communities to initiate projects ranging from family planning to micro-enterprise efforts” (Harvard Program in Infectious Disease and Social Change, 1998). At the meetings close, those in attendance agreed to establish a WHO Task Force on MD-RTB charged with setting guidelines for the DOTS-Plus pilot programs. As a compromise, these pilot programs would investigate the feasibility of both individualized treatment and of a new, standardized re-treatment regimen, with both second- and third-line drugs (Proceedings of 1998 Meetings and Protocol Recommendations, 1999)
Insofar as it recharged and reoriented leaders within the global TB community toward addressing the MDR-TB crisis, the meeting was a resounding success. In a joint press release disseminated by the PIDSC, titled, “Sea Change in Global Tuberculosis Control,” the authors end with a quote from Kochi: “We have to think about MDRTB in a new way. In the past, we have seen it as a virtual death sentence for the people in developing countries, but now we can give people the hope of a cure” (Harvard Program in Infectious Disease and Social Change, 1998). For Farmer and his colleagues, Kochi’s words did, indeed, symbolize a ‘sea change’ in the WHO’s approach to global tuberculosis control. In correspondences with Farmer following the meeting, one attendee surmised that the meeting would become known as “THE Weekend Meeting” (“E-mail from Charles Nolan to Partners, Subject: THE Weekend Meeting,” 1998). Another called it an “event meeting,” adding that “it was a rare, beautiful, and fulfilling weekend” (“Jules Kramer to Howard Hiatt,” 1998).
At the same time, however, there remained a divide between PIH and the WHO. This was evident at the close of the meeting, when Dr. Sergio Spinaci, who served as the coordinator of the WHO’s Communicable Diseases Programme at the time, invited Sir John Crofton to chair the Task Force. In a letter to Farmer dated to April 10th, 1998, Crofton expressed that he was “embarrassed” that Spinaci had invited him without first discussing it with Farmer, adding that, “When it was announced publicly everybody felt they had to be polite and accept it but I would be entirely happy if you thought it useful to replace me Obviously, I could do no more than get things started as it is unlikely that I would head the Task Force for a number years in view of my age” Even if one concludes that Spinaci’s decision amounted to nothing more than politics, it would soon become clear that the April Meeting—indeed, the advent of DOTS-Plus, itself—only marked the beginning, rather than the end, of the integration of PIH’s models and ideologies with those of the WHO.
In fact, as evidenced in publications individually authored by the WHO and PIH shortly following the meeting, the two organizations continued to understand the role of DOT within these two models in distinct ways. According to the WHO, DOTS-Plus represented a pragmatic solution to administer treatment for MDR-TB in resource-limited settings, with an emphasis on its technical aspects, including second-line drug procurement and the capacity to carry out serial DST. Importantly, the WHO initially envisioned the role of DOT in the treatment of MDR-TB to be critically important because of the need to reduce the chances of amplification of resistance to second-line drugs (Raviglione, 2000). In this way, then, perhaps DOTS-Plus placed a greater emphasis on DOT than did DOTS because whereas in DOTS, the emergence of resistance to first-line drugs would be addressed with the administration of second-line drugs, in DOTS-Plus, if resistance to second-lines drugs emerged, all available drugs would have already been exhausted. By contrast, PIH emphasized that DOT was particularly important in treating MDR-TB because it allowed for the prompt identification and management of potentially severe side effects that resulted from treatment with second-line drugs. In a book chapter titled, “Making DOTS-Plus Work,” the authors further emphasized that in addition to supervision and management of adverse effects, the role of the promotores—which they interestingly refer to as “DOTS-Plus outreach workers”—also included “communication with other health providers, and provision of social and emotional support (Paul Farmer et al., 2000). In accounting for the absence of explicit discussion about the role of DOT and CHWs at the April meeting, Furin explained that the PIH team “felt like we couldn’t fight that battle, we were fighting so hard to be allowed to treat MDR-TB, and everyone and their mother was saying that if you treat MDR you’re going to unleash all these pan-resistant strains on the world—and so you have to make sure you’re going to use DOT. And, so we couldn’t even fight that battle; I mean if we did, we would have lost” (Dr. Jennifer Furin, 2016).
Still, the question of the identity of DOTS-Plus remains: was it “a humanitarian gesture, clinical medicine, or a control strategy?” (Arnadottir, 2009). The answer to this question rests, in part, in where we choose to locate DOTS-Plus in the histories of DOTS and PIH’s accompaniment model. At the April meeting, Dr. Philip Hopewell called attention to what he saw as a sort of “interpersonal schizophrenia,” namely the need to reconcile population-based TB control with the needs of the individual TB patient. He bemoaned the fact that as a physician working in resource-limited settings, he understood that it was “almost impossible—morally, ethically—to turn your back on the patient who has drug-resistant disease, yet that’s what the pure programmatic approach often expects the physician to do in the context of the developing country and national tuberculosis control programs” .
Thus, DOTS-Plus was clinical medicine: it called for the use of serial DST to enable clinicians to design individualized treatment regimens and utilized CHWs to administer treatment and manage clinical symptoms. To the extent that ‘treatment was prevention’, DOTS-Plus was also a control strategy; SES/PIH’s work in Peru proved that CHWs could, among other things, ensure that patients adhered to treatment, thus minimizing resistance and contributing to an overall decrease in the burden of MDR-TB. And, finally, in demonstrating, through their work in Haiti and Peru, that their model was feasible and replicable in resource-limited settings, DOTS-Plus constituted more than a humanitarian gesture insofar as it meant that the world’s poorest MDR-TB patients could receive treatment for MDR-TB. In some ways, however, the incredible success of PIH’s community-based approach was also its fatal flaw. Discourses of patient agency and structural violence, of accompaniment and accompagnateurs, never found their way into the April meeting. No room for such language or ideology had been historically carved out, and so the members of PIH, understandably anxious to capture the attention of the global TB community, also left it out. As a result of this back-grounding of what PIH had insisted lay at the crux of their model’s success, PIH effectively presented the global TB community with a proven, albeit expensive, model with seemingly few strings attached for treating MDR-TB in many of the ‘hot zones’ that had been identified through the Global Project’s surveillance efforts. As such, PIH’s accompaniment model was reduced to its capacity to provide effective treatment, and so DOTS-Plus constituted the superimposing of technical aspects taken from the PIH model atop a well-established, previously uncontested control strategy. In this way, the advent of DOTS-Plus obviated the need to reconsider all those things about DOTS that contributed to its poor outcomes, including the extent to which it accounted for constraints on individual agency.
To be certain, according to Mitnick, “DOTS-Plus was never inconsistent with PIH values or a stretch of PIH principles. I think we saw the value in continuing to use a name that had been very, very heavily marketed for more than five years at that point, and that we actually believed had some really good attributes” (Dr. Carole Mitnick, 2016). At the same time, however, she remarked that “what was problematic was the dumbing down of any treatment of a complex disease existing in a biosocial environment that was completely ignored by that strategy” (Dr. Carole Mitnick, 2016). Furin similarly noted that one of the issues with the implementation of DOTS-Plus was the conventional wisdom that health workers in developing countries were incapable of complexity; insofar as representatives from the WHO subscribed to this narrative, they feared supporting a model that would have to be specifically adapted to each context in which it was implemented (Dr. Jennifer Furin, 2016). Both Mitnick and Furin’s accounts further support the conclusion that the revised model was, in many ways, the summing, as opposed to the integration, of the two models from which it arose. At its most fundamental level, PIH’s accompaniment model viewed human health as inextricably linked from the very biosocial environment that Mitnick claims DOTS-Plus ignored; indeed, the model’s mechanistic rationale was based on the recognition that only by accounting for this biosocial environment—where it is understood that the contours and causes of illness are shaped by the nature of structural forces and the extent to which they constrain individual agency—is it possible to administer care capable of ensuring a patient’s total health. In the end, DOTS-Plus unquestionably made important strides toward securing treatment for the poorest of MDR-TB patients and broadening the scope of typical discourse to accommodate new discussion about the expanded role of CHWs and later, of the social determinants of health. However, it would still take time after the advent of DOTS-Plus for WHO policies to alter their notions of agency in a substantive way. To be sure, DOTS-Plus marked the beginning of this process, but ultimately, it represented only that.
Amidst the rise of PIH to the global TB stage, the team’s work in Haiti continued along. Following a dramatic increase in AIDS-related deaths, PIH launched the HIV Equity Initiative in 1998 and began offering highly active antiretroviral therapy (HAART) to their sickest patients (Behforouz, Farmer, & Mukherjee, 2004, p. S430). The project similarly harnessed the power of the existing, robust network of accompagnateurs to deliver effective, long-term care to individuals suffering from AIDS. As part of their treatment, patients underwent social assessments to identify potential barriers to adherence and received visits from a social worker to assess their financial situation and the extent of their social support networks. The result of these assessments, as well as input from the accompagnateurs, subsequently informed the development of a tailored treatment plan for each patient (Behforouz et al., 2004).
At the same time, Heidi Behforouz, another clinician connected to PIH, launched the PACT Project (Prevention and Access to Care and Treatment), an initiative that incorporated the use of community health workers to work with Boston’s most vulnerable HIV/AIDS patients. While the programs differed in several ways, perhaps the most relevant is that PACT differed from the HIV Equity Initiative in that it “recognized that adherence is not a fixed variable” (Dr. Jennifer Furin, 2016). To that end, PACT employed the use of DOT as the most intensive type of adherence support only to patients who required such support for medical or psychosocial reasons (Dr. Heidi Behforouz, 2016). In those cases, patients were assigned both a DOT specialist and a health promoter who, together, carried out the type of work that an accompagnateur in Haiti would. Behforouz remarked that in PACT, the health promoters’ provision of social support and attention to patients’ housing needs and food insecurity issues was the ‘plus’ in PACT’s DOTS-Plus work (Dr. Heidi Behforouz, 2016). She noted that there was “a lot of ‘plus’ in the DOT work,” however, as the DOT workers were often the only human contact many of their marginalized patients experienced in the course of their day. In this way, Behforouz emphasized that “every experience is its own experience, you have to contextualize what the ‘plus’ is and not take for granted that it means the same thing everywhere” (Dr. Heidi Behforouz, 2016).
In a seminal article published in Clinical Infectious Diseases titled, “From Directly Observed Therapy to Accompagnateurs: Enhancing AIDS Treatment Outcomes in Haiti and in Boston,” Heidi Behforouz et al. reflected upon critical ways in which the HIV Equity Initiative and PACT, represented a symbolic and practical departure from standard DOT-related treatment. While admitting that they “lack[ed] a vocabulary to describe what accompagnateurs did in making home visits to their neighbors,” the authors argued that their integrated programs for AIDS prevention and care sought “to move beyond DOT to the notion of accompaniment” (Behforouz et al., 2004). The authors continued:
The clinical and public health literature has little to say regarding the social processes involved in “accompanying” patients with chronic, treatable diseases. During the program review, we learned that accompagnateurs were sharing food with their patient-neighbors, babysitting, and running errands. Some of the accompagnateurs were themselves receiving antiretrovirals from their own accompagnateurs. Something far more complex and beneficial than DOT—a “virtuous social cycle”—occurs when neighbors are enlisted in the struggle against tuberculosis and HIV infection (Behforouz et al., 2004).
Even as the authors admitted to possessing only a high-level understanding of the ‘virtual social process’ set in motion by accompaniment, they sought to present this fact not as a flaw, but rather as an impetus for further investigation into this area of inquiry. Presumably, this new, more confident organizational disposition arose as a result of the legitimacy extended to their model of TB care by the global TB community at the April meeting. In first proving that they could transfer the accompaniment model across geographies, they then tackled the challenge of demonstrating the model’s utility across disease categories. Furthermore, their work allowed them to draw broader conclusions, too, namely that “providing comprehensive care not only supports HIV treatment and prevention efforts but also serves to strengthen public health infrastructures and reinforce other fundamental health care goals” (Behforouz et al., 2004). Evidently, the successful application of the accompaniment model to the treatment of AIDS marked an important shift in PIH’s self-perception; with more successful program outcomes in their portfolio, PIH began marketing its accompaniment model by name and began chasing after more politically contentious institutional objectives.
At the same time, however, the organization remained committed to the ideals espoused in their accompaniment model. On September 17th, 1998, after attending a meeting at the White House with First Lady, Hillary Clinton, Farmer wrote the following in a letter to George Soros and Aryeh Neier, the President of Soros’ Open Society Institute:
It’s clear that we’ve become, in a relatively short period of time, important players in the international TB scene. Although the goal of becoming players is not in and of itself a worthy one, I think we can ennoble such an aspiration merely by remaining true to our central goal of serving the poor. In other words, I trust us to be conscientious and principled participants in this struggle. Given a preferential option for the poor, the responsibilities incumbent upon us after such a meeting are to keep trying to change policies that ensure no treatment for those dying of a treatable disease (In this same letter, Farmer “confess[ed] that it was a bit of a rush to hear Hillary Clinton use the term ‘DOTS-Plus,’ which was more or less coined at the April meeting.” “Dr. Paul Farmer to Aryeh Neier and George Soros,” 1998).
In the wake of PIH’s newfound celebrity, the organization’s accompaniment model, in some ways, came to represent much more than a broader and more sophisticated understanding of a patient’s agency and the forces which served to constrain the patient’s ability to adhere to treatment; it came to symbolize a stated commitment to the pursuit of global health equity and social justice. Above all else, this underscores the central role that notions of patient adherence played in informing—indeed, in transforming—broader discourses surrounding tuberculosis treatment and drug resistance.
Conclusion: Beyond DOTS, There is Salvation
On June 4-5, 2001, the WHO convened an international meeting on Adherence to Long-term Therapies. In the published report that emerged from the meeting two years later, the authors presented a sophisticated, nuanced understanding of adherence to treatment in which patient-related factors comprised just one of five total dimensions of adherence, the others being condition-related factors, health system/HCT- factors, social/economic factors, and therapy-related factors (Sabaté & World Health Organization, 2003). Importantly, the guide adopted a systems-approach to the study of adherence; toward that end, the authors wrote,
Many of the world’s poor, despite regional differences in geography, culture and commerce, experience the same discouraging cycle: being healthy requires money for food, sanitation and medical care, but to earn money, one must be healthy. The lack of adequate care for chronic conditions forces poor families to face a particularly heavy burden of caring for their loved ones that undermines the development of their most basic roles…Competing needs in populations suffering from chronic poverty undermine efforts to address the needs of patients requiring long-term care, including the problem of adherence to medications and therapies (Sabaté & World Health Organization, 2003).
Furthermore, the guide explained that “DOT has always meant much more than ‘supervised swallowing.’ Different projects in countries with a high prevalence of TB have shown that removing the socioeconomic barriers to DOT faced by patients increases adherence and cure rates (38,39)” (Sabaté & World Health Organization, 2001). Here, the authors subtly allude to the fact that for PIH, DOT always represented much more: a quick glance at the relevant chapter’s bibliography reveals that reference ‘38’ is a citation for Farmer et al.’s 1991 article, “Tuberculosis, Poverty, and ‘Compliance’ (Paul Farmer et al., 1991). Indeed, the results of the study reported in the article served as the basis for Partners In Health’s accompagnateur model. And, although this thesis has argued that DOT did not, in fact, always mean much more than ‘supervised swallowing’ in most other programs and policies, by the time this document was published in 2003, in many cases, it did. In fact, in 2002, the WHO published a Guide for Tuberculosis Treatment Supporters, a simple manual intended for use by lay people supervising the treatment of a tuberculosis patient. Addressing the reader, the authors explained that the “TB Treatment Supporter’s main role is to make sure that the patient takes the drugs regularly, on schedule, for the full duration of treatment. You will also need to listen and encourage the patient as part of this support” (Munz & Bergström, 2002). Nevertheless, more than a decade later, Ernesto Jaramillo, who worked with PIH in the early 2000s and who co-authored the section on tuberculosis in Adherence to Long-Term Therapies, lamented that “Thousands of people, including some people in the WHO, are still in the trenches of the dogmatic approach of the mid-90s in which a rigid and mechanic DOT was dogma, when in fact, for the past decade, the WHO has distanced itself from the fixation that beyond DOT there is no salvation” (Dr. Ernesto Jaramillo, 2016).
In 2005, the WHO established the first-ever Commission on the Social Determinants of Health (CSDH), whose purpose was to leverage an understanding of the social determinants of health in order to affect change in the service of advancing global health equity. According to Jaramillo, this Commission’s establishment led to major changes in approaches to TB from the 1990s, namely “the acknowledgement that social support was as important as the drugs” (Dr. Ernesto Jaramillo, 2016). More specifically related to the WHO’s work on TB, Jaramillo explained that the Commission’s work “contributed to creating an atmosphere and environment in which there is nobody in the department who dares to question the relevance of social support and social determinants” (Dr. Ernesto Jaramillo, 2016).
Since the advent of DOTS-Plus, two new strategies for global TB control have been implemented, namely the Stop TB Strategy (2006-2015) and, more recently, the End TB Strategy (2016-2035). With the development of each strategy, the architects implemented an increasingly more sophisticated approach to patient support that is “context-specific and “patient sensitive” (Maher & Raviglione, 2009). With regard to patient adherence, the Stop TB Strategy’s recommended measures to promote adherence included, among other things, “placing the patient at the centre of TB control activities” and “addressing factors that may make patients interrupt or stop treatment by identifying potential problems in advance” (Maher & Raviglione, 2009). Finally, the strategy’s architects noted that “there is now increasing recognition of the role in promoting adherence of a treatment partner or supporter who is acceptable to the patient and is trained and supervised by health services, and of the patient and peer support groups” (Maher & Raviglione, 2009). Toward this end, in 2008, the WHO formally recommended that community-based care should be incorporated into NTPs to promote patient adherence. The authors elaborated that “Even when DOT is not provided by a former patient but by a local community member, it is a powerful act of solidarity” (Jaramillo, 2008). Readers may detect a symbolic reference to PIH’s notion of ‘pragmatic solidarity’; in fact, many members of PIH served on the Guidelines Reference Group.
Over the course of the history of patient compliance, there have emerged two broad approaches to addressing noncompliance. One distinct approach has been to seek changes in patient behavior or other externalities surrounding TB treatment. As recognition of these externalities has grown, so too has this approach evolved: rather than strictly seeking to alter patient behavior, interventions have sought to mitigate or, at the very least account for, those forces that serve to constrain patients’ ability to comply with treatment. Much of the changes to TB policy in the new millennium reflect this evolution.
At the same time, a second approach has sought to alter the very nature of the drug regimen. Indeed, this is demonstrated in the increasingly shorter duration of treatment and frequency of administration that has accompanied revisions of TB treatment standards. What began as strictly daily administration of monotherapy has evolved into intermittent short-course chemotherapy. While this approach to overcoming non-compliance has contributed to critical advances in the treatment of tuberculosis, it alone cannot ‘design away’ the influence of patient compliance on treatment for tuberculosis. Nonetheless, this approach has comprised much of the research on adherence to tuberculosis treatment in the absence of new drugs (Gupta et al., 2015).
After more than forty years, two novel drugs, Bedaquiline and Delamanid, have been introduced for the treatment of MDR-TB within the last five years. At the time of writing, they remain approved only for ‘compassionate use’ among patients who have stopped responding to all first- and second-line drugs. Already, growing anxieties about the inevitable emergence of resistance to these drugs have begun to enter into the global conversation.
Recent history has demonstrated that as discourses of patient compliance and drug resistance have evolved, so too has the pathogen. Presumably, this will continue to be the case whether or not new drugs for the treatment of tuberculosis are discovered. As such, it will remain critical in the coming years for those involved in making policies and treating patients to continue to place patients at the very center of their work.
Arnadottir, T. (2009). Tuberculosis and Public Health-Policy and Principles in Tuberculosis control.
Behforouz, H. L., Farmer, P. E., & Mukherjee, J. S. (2004). From Directly Observed Therapy to Accompagnateurs: Enhancing AIDS Treatment Outcomes in Haiti and in Boston. Clinical Infectious Diseases, 38(Supplement 5), S429–S436. https://doi.org/10.1086/421408
“Cambodian Health Committee Activities Report,” 1997. Box 6. Partners in Health Records, HMS c299. Harvard Medical Library, Francis A. Countway Library of Medicine, Boston, Massachusetts.
Dr. Carole Mitnick. (2016, January 15). [Interview with author, Boston, MA].
Dr. Ernesto Jaramillo. (2016, January 21). [Skype interview with author].
Dr. Heidi Behforouz. (2016, January 8). [Telephone interview with author].
Dr. Jaime Bayona. (2016, January 22). [Telephone interview with author].
Dr. Jennifer Furin. (2016, January 7). [Telephone interview with author].
“Dr. Paul Farmer to Aryeh Neier and George Soros.” 1998, September 17. Box 8, Folder 48. Howard H. Hiatt Papers, 1940-2001 (inclusive), 1975-2001 (bulk), H MS c314. Harvard Medical Library, Francis A. Countway Library of Medicine, Boston, Massachusetts.
“Dr. Paul Farmer to Dr. Arata Kochi.” 1997, August 11. Box 8, Folder 47. Howard H. Hiatt Papers, 1940-2001 (inclusive), 1975-2001 (bulk), H MS c314. Harvard Medical Library, Francis A. Countway Library of Medicine, Boston, Massachusetts.
“E-Mail from Charles Nolan to Partners, Subject: THE Weekend Meeting.” 1998, April 9. Box 9, Folder 4. Howard H. Hiatt Papers, 1940-2001 (inclusive), 1975-2001 (bulk), H MS c314. Harvard Medical Library, Francis A. Countway Library of Medicine, Boston, Massachusetts.
Farmer, Paul. (1997). Social scientists and the new tuberculosis. Social Science & Medicine, 44(3), 347–358. https://doi.org/10.1016/S0277-9536(96)00143-8
______. (Ed.). (1999). Invisible Women: Class, Gender, and HIV. In Infections and Inequalities (1st ed., pp. 59–93). University of California Press.
______. (2011, May). Accompaniment as Policy. Commencement Address, Kennedy School of Government, Harvard University. Retrieved from http://www.lessonsfromhaiti.org/press-and-media/transcripts/accompaniment-as-policy/
______. (2014). Health, Healing, and Social Justice: Insights from Liberation Theology. In The preferential option for the poor beyond theology (pp. 199–228). Retrieved from http://alltitles.ebrary.com/Doc?id=10815888
Farmer, P., Bayona, J., Becerra, M., Furin, J., Henry, C., Hiatt, H., … Shin, S. (1998). The dilemma of MDR-TB in the global era [Counterpoint]. The International Journal of Tuberculosis and Lung Disease, 2(11), 869–876.
Farmer, P., & Gutiérrez, G. (2013). In the company of the poor: conversations between Dr. Paul Farmer and Fr. Gustavo Gutierrez. Maryknoll, New York: Orbis Books.
Farmer, P., Robin, S., Ramilus, S. L., & Kim, J. Y. (1991). Tuberculosis, Poverty, and “Compliance”: Lessons from Haiti. Seminars in Respiratory Infections, 6(4), 254–260.
Farmer, P., Shin, S. S., Bayona, J., Kim, J. Y., Furin, J. J., & Brenner, J. G. (2000). Making DOTS-Plus work. In I. Bastian & F. Portaels (Eds.), Multidrug-resistant Tuberculosis (Vol. 1, pp. 285–306). Dordrecht: Springer Netherlands. Retrieved from http://www.springerlink.com/index/10.1007/978-94-011-4084-3_19
Gupta, R., Gao, M., Cirule, A., Xiao, H., Geiter, L. J., & Wells, C. D. (2015). Delamanid for Extensively Drug-Resistant Tuberculosis. New England Journal of Medicine, 373(3), 291–292. https://doi.org/10.1056/NEJMc1415332
Gutiérrez, G. (1973). A Theology of Liberation: History, Politics, and Salvation. Orbis Books.
Harvard Program in Infectious Disease and Social Change. (1998, June 4). April Meeting summary for exclusive release to British Medical Journal.
Holme, C. (1997). Trial By TB. Proceedings of the Royal College of Physicians of Edinburgh, 27(1, Supplement 4).
Hopewell, P. C., Sanchez-Hernandez, M., Baron, R. B., & Ganter, B. (1984). Operational Evaluation of Treatment for Tuberculosis: Results of a “Standard” 12-Month Regimen in Peru. American Review of Respiratory Disease, 129(3), 439–443.
Iseman, M. D. (1985). Tailoring a Time-Bomb. American Review of Respiratory Disease, 132(4), 735–736. https://doi.org/10.1164/arrd.19188.8.131.525
Islam, M. A., May, M. A., Ahmed, F., Cash, R. A., & Ahmed, J. (2011). Making Tuberculosis History: Community-based Solutions for Millions. The University Press Ltd.
Jaramillo, E. (Ed.). (2008). Guidelines for the programmatic management of drug-resistant tuberculosis: [emergency update 2008] (Emergency update). Geneva: World Health Organization, Stop TB Department.
“Jules Kramer to Howard Hiatt,” April 15, 1998. Box 9, Folder 4. Howard H. Hiatt Papers, 1940-2001 (inclusive), 1975-2001 (bulk), H MS c314. Harvard Medical Library, Francis A. Countway Library of Medicine, Boston, Massachusetts.
Kidder, T. (2009). Mountains beyond mountains. New York: Random House Trade Paperbacks.
Lienhardt, C., Glaziou, P., Uplekar, M., Lönnroth, K., Getahun, H., & Raviglione, M. (2012). Global tuberculosis control: lessons learnt and future prospects. Nature Reviews Microbiology, 10(6), 407–416. https://doi.org/10.1038/nrmicro2797
Maher, D., & Raviglione, M. (2009). The history of the DOTS strategy: Achievements and perspectives. In Tuberculosis: A comprehensive clinical reference (pp. 930–939). Elsevier. Retrieved from http://linkinghub.elsevier.com/retrieve/pii/B9781416039884001050
Multidrug Resistant Tuberculosis (MDR-TB), Basis for the Development of an Evidence-Based Case-Management Strategy for MDR-TB within the WHO’s DOTS Strategy, Proceedings of 1998 Meetings and Protocol Recommendations. (1999). (No. WHO/TB/99.260).
Munz, M., & Bergström, K. (2002). A guide for tuberculosis treatment supporters. World Health Organization.
“Overview of Programs.” Undated. Box 3. Partners in Health records (HMS c299), Harvard Medical Library in the Francis A. Countway Library of Medicine.
“Paul Farmer to Diana Weil.” 1998, March 10. Box 9, Folder 4. Howard H. Hiatt Papers, 1940-2001 (inclusive), 1975-2001 (bulk), H MS c314. Harvard Medical Library, Francis A. Countway Library of Medicine, Boston, Massachusetts.
“Paul Farmer to Howard Hiatt.” 1997, April 15. Box 13, Folder 39. Howard H. Hiatt Papers, 1940-2001 (inclusive), 1975-2001 (bulk), H MS c314. Harvard Medical Library, Francis A. Countway Library of Medicine, Boston, Massachusetts.
Porter, J., Lee, K., & Ogden, J. (2002). The globalisation of DOTS: tuberculosis as a global emergency. In Health Policy in a Globalising World. Cambridge University Press. Retrieved from http://dx.doi.org/10.1017/CBO9780511489037.012
Raviglione, M. C. (2000). DOTS and multidrug-resistant tuberculosis. In I. Bastian & F. Portaels (Eds.), Multidrug-resistant Tuberculosis (Vol. 1, pp. 115–131). Dordrecht: Springer Netherlands. Retrieved from http://www.springerlink.com/index/10.1007/978-94-011-4084-3_7
Sabaté, E., & World Health Organization. (2001). Adherence to long-term therapies: policy for action: meeting report, 4-5 June 2001.
Sabaté, E., & World Health Organization (Eds.). (2003). Adherence to long-term therapies: evidence for action. Geneva: World Health Organization.
“Seth Berkley to Howard Hiatt.” 1997, April 18. Box 8, Folder 44. Howard H. Hiatt Papers, 1940-2001 (inclusive), 1975-2001 (bulk), H MS c314. Harvard Medical Library, Francis A. Countway Library of Medicine, Boston, Massachusetts.
Shin, S., Furin, J., & Singler, J. (2005). DOT and beyond: Comprehensive Management of Tuberculosis. In J. A. Trafton & W. P. Gordon (Eds.), Best practices in the behavioral management of chronic disease. (Vol. II, pp. 56–78). [Los Altos, Calif.]: Institute for Brain Potential.
“Sir John Crofton to Paul Farmer.” 1998, April 10. Box 49. Partners in Health records (HMS c299), Harvard Medical Library in the Francis A. Countway Library of Medicine.
Smith-Nonini, S. (2005). When “the program is good, but the disease is better”: lessons from Peru on drug-resistant tuberculosis. Medical Anthropology, 24(3), 265–296. https://doi.org/10.1080/01459740500189548
“Transcript of ‘Community-Based Approaches to MDRTB Treatment and Control.’” 1998. Academy of Arts and Sciences, Cambridge, MA. Audio Transcript. Partners in Health Records, HMS c299. Harvard Medical Library, Francis A. Countway Library of Medicine, Boston, Massachusetts.
Voelker, R. (1998). Ebola With Wings. JAMA, 280(14), 1216. https://doi.org/10.1001/jama.280.14.1216-JWM80007-4-1
WHO Tuberculosis Programme. (1994). Framework for Effective Tuberculosis Control (No. WHO/TB/94.179). World Health Organization.
Zimmermann, T. (1997). Fighting TB: a second chance to do it right. U.S. News & World Report, 122(12), 45.