Red tape, slow emergency, and chronic disease management in post-María Puerto Rico

Abstract

This paper draws upon the notion of slow emergency as a framework to interpret ethnographic and qualitative findings on the challenges faced by Puerto Ricans with chronic conditions and health sector representatives throughout the island during and after Hurricane María. We conducted participant observation and qualitative interviews with chronic disease patients (n=20) health care providers and administrators (n=42), and policy makers (n=5) from across the island of Puerto Rico in 2018 and 2019. Many Puerto Ricans coping with chronic diseases during and after María experienced bureaucratic red tape as the manifestation of colonial legacies of disaster management and health care. They describe a precarious existence in perpetual “application pending” status, waiting for services that were not forthcoming. Drawing on ethnographically informed case examples, we discuss the effects of these bureaucratic barriers on persons with three chronic conditions: renal disease, opioid dependency, and HIV/AIDS. We argue that while emergency management approaches often presume a citizen-subject with autonomous capacity to prepare for presumably transient disasters and envision a ‘post-disaster future’ beyond the immediate crisis, Puerto Rican voices draw attention to the longer, sustained, slow emergency of colonial governance.

On September 2017 Hurricane María hit Puerto Rico (PR), a US territory populated by 3.5 million American citizens. The event reached the island as a category 4 hurricane and crossed the territory in a south-east to north-west trajectory. This catastrophic event caused long-term breakdowns in vital infrastructure systems, including the longest blackout in US history (Michaud & Kates, 2017). Although the hurricane’s impact varied across sectors, one of the most devastating was the total collapse of PR’s health care delivery system.

For all Puerto Ricans, but perhaps especially persons with chronic conditions, the consequences of the collapse of the island’s health care system contributed to an ongoing fragility that has been long rooted in colonial governance, economic extraction, and bureaucratic mismanagement (Bonilla, 2020). In practical terms, post-hurricane journalistic and scholarly reports told of the historic scope of the collapse of the Puerto Rican health care system, which included: 1) all 69 hospitals left without electricity (Zorrilla, 2017); 2) drug shortages and bureaucratic barriers to dispatching medications to patients (Thomas & Kaplan, 2017); 3) major hospitals unable to operate for extended periods (Michaud & Kates, 2017); 4) patients with common chronic illnesses (e.g., renal disease, cancer, HIV/AIDS, drug addiction) unable to access services for weeks (Alcorn, 2017), resulting in many of the country’s approximately 4,645 estimated deaths attributed to Hurricane María (Kishore et al., 2018).¹ The impact of this catastrophe on morbidity, mortality, adherence to treatments, and medical complications for individuals living with chronic conditions is only beginning to be documented (Abbasi, 2018; Michaud & Kates, 2017; Roman, 2018).

Social scientists and scholars in allied fields have been quick to emphasize that the crisis of María did not emerge sui generis from this singular “natural” event. Rather, the storm’s devastating impacts have accelerated a decades-long series of neoliberal policy reforms and dehumanizing colonial governance strategies that privatized critical infrastructure and weakened social safety nets (García-López, 2018; Garriga-López, 2020). One of the means through which these governing logics are manifested is through the formation of bureaucratic institutions that are the interface between the public and forms of government assistance, which become visible ethnographically through federal, municipal, and local procedures, forms, applications, the proliferation of low- and mid-level technocrats, and “approval processes.” As anthropological scholarship on “red tape” and the quotidian practices of aid bureaucracies demonstrates, the provision of “aid” alone may not function to alleviate suffering among the most vulnerable. Indeed, in his classic ethnography of “red tape,” Akhil Gupta (2012) attributes the persistence of poverty in India despite the proliferation of poverty alleviation programs to the corruption and fundamental arbitrariness of these programs, offering a corrective to the presumption of a benevolent or merely benign aid bureaucracy. Indeed, he argues that poverty alleviation programs reproduce structural violence through the arbitrary nature of their effects, trapping individuals in endless transactions that ultimately reproduce the mortal levels of inequality they presumably are designed to address (see also Auyero, 2012).

In this article, we examine the lived experience of health care from the perspective of their presumed beneficiaries, persons with chronic conditions who were in critical need of life-sustaining treatments and care in the aftermath of María, as well as health sector representatives (health care providers and program administrators). We aim to explore how these individuals sought aid from a variety of sources: the Federal Emergency Management Agency (FEMA), the Puerto Rican health care agencies (e.g., PR Health Department), specific specialized facilities (such as dialysis centers and substance use rehabilitation centers), and the numerous insurance providers charged with health care delivery under the island’s reformed managed care system. Drawing on ethnographic observations and interviews with Puerto Ricans from both urban and rural areas of the island, we ask the following questions: How have individuals sought to engage these institutions of care in the aftermath of the disaster? What responses did they receive from health care system representatives at the acute stage of emergency, and during the months of recovery, which have stretched into the ordinariness of a ‘new normal’ – a life lived within an unspectacular, ongoing disaster?

Taking cues from critical theoretical literature on colonial health care and disaster management, we argue that administrative ‘red tape’ is designed to limit access to care among vulnerable communities, even when individual representatives of the institutions of care may possess a genuine desire to ameliorate the problem. Garriga-López gestures towards this perspective in her analysis of disaster aid in PR: “In this interrupted geography of ecological disaster and personal loss currently already affecting millions of people, the modus operandi of disaster relief—that is, ‘logistics’ as the strategic labor performed by colonial governmentality—is nothing other than a managerial modality of slow genocide or an intensifying mode of necropolitical governance” (2020, p. 129). To unpack how this “slow violence” of colonial governance (Nixon, 2011) extends to the bureaucratic provisioning of health care and shapes the possibilities for post-disaster health outcomes, we read across recent work on the coloniality of disaster (Bonilla, 2020; Bonilla & LeBrón, 2019) and “slow emergencies” (Anderson et al., 2020; Rivera, 2020). In brief, the concept of slow emergencies recognizes how hegemonic emergency management techniques and strategies – including those of post-disaster health resilience – reference a particular experience of temporality: the open-ended, anticipatory temporality of the modern European subject. Indeed, the presumption of a future free of disaster is increasingly elusive for Puerto Ricans, who often view the presumed ‘recovery’ after each environmental disruption as perpetually forestalled. In contrast, the notion of slow emergencies “blur the lines between everyday life and emergencies” (Anderson et al., 2020, p. 623), particularly among the poor, the geographically marginal, or the non-white, thereby laying bare the urgent question of who can assert a future state of recovery beyond the reach of disaster. Finally, through our analysis we aim to highlight exemplary local, community initiatives that were instrumental in delivering care in ways that overcame or circumvented the violence of disaster bureaucracy, contesting in innovative ways the durative quality of the ongoing slow emergency. In the conclusion, we argue that conceptualizing health system bureaucracy in PR as a slow emergency can direct attention to these experiences and narratives of solidarity and resistance both through and against suffocating colonial health care institutions.

Background

In a recent contribution to the emerging literature on the structural and historical context of Hurricane María in PR, Yarimar Bonilla and Marisol Lebrón have co-edited the volume, Aftershocks of Disaster: Puerto Rico before and after the storm (2019). The authors extend the temporal metaphor of aftershocks to the lived experience of Puerto Ricans, describing the effects of this apparently singular event as ongoing and rooted in centuries-long colonial disaster – the structural abandonment, limits on sovereignty, and politico-legal tools that have hobbled local government’s capacity to meet the basic needs of its population. While PR’s legal status as an unincorporated territory of the US obfuscates the reality of US imperialism, techniques of colonial rule have routinely undermined the island’s possibilities for self-determination (Morales, 2019). These include the Jones Act of 1920, which requires all goods to arrive on US vessels crewed primarily by Americans, the Jones Act of 1917, which legislatively mandated PR’s triple tax exempt bonds, and more recently the Fiscal Control Board (known locally as PROMESA or “La Junta”), an unelected body established in 2016 to manage the nation’s surging debt of $72 billion through traumatic austerity measures. Bonilla and Lebrón’s (2019) metaphor of aftershocks raises important ontological questions about the origins of the current emergency, blurring the initial storm from the structurally entrenched, durable ripple-effects of colonialism and structural abandonment.

In this colonial context, the institutions and procedures of federal post-María disaster governance exacerbated rather than ameliorated quotidian insecurities, vulnerabilities, and inequalities within the PR population. For example, there are stark contradictions between the official FEMA numbers of beneficiaries who received aid in the aftermath of María, and the observed experiences and narratives of everyday Puerto Ricans on the ground. One recent ethnographic example demonstrates that while FEMA reported that “the agency approved 464,921 applications for the Individual and Household Assistance Program,” in fact, “FEMA denied or did not respond to 79 percent of the appeal claims” (Molinari, 2019, pp. 285–286). Molinari reveals through stories of her ethnographic informants, many of whom had lost their homes and were occupied for months in desperate applications for relief from FEMA and other agencies, the effects of a life in ‘application pending’ status. Her ethnographic data illustrates the seemingly endless attempts by community members to access disaster aid, which was often woefully inadequate to meet the actual cost of reconstruction. Meanwhile, bureaucratic exigencies for “authentication of loss” became the proximal means by which to forestall urgently needed assistance.

The neoliberal and colonial reverberations in the bureaucratic delivery of disaster aid is perhaps even more pronounced among those who sought health services for chronic conditions following the storm. In addition to the generalized loss of home and property, these individuals had to navigate access to life-sustaining medical treatments, technologies, and procedures through a health care delivery system that has experienced innumerable deathblows over the previous decades, predating María. Mulligan (2014), an ethnographer who worked in one of the health-management companies enabled by changes in the island’s historically exemplary municipal health system to a private market-based system in 1993 (referred to as “La Reforma”), traces the history of recent modifications to the health sector that have left a growing proportion of Puerto Ricans with tenuous health care access and escalating bureaucratic inefficiencies. While La Reforma is partially funded by Medicaid, funds from the US are capped in the Puerto Rican territory, and the program has relied on a significant local tax base to sustain it – a reality that has become untenable in the current debt crisis. La Reforma was restricted only to those at or below 200% of the federal poverty line, leaving a large class of uninsured for the first time in the country’s history.

The limitations on Medicaid for PR have become a flashpoint for political debates on the island and in Washington, D.C., as they crystallize colonial disparities and the second-class citizenship of the island’s residents. Indeed, as of this writing, Puerto Rican politicians are pressing the Biden Administration to address the potential calamity of plummeting federal health care support (Ortiz-Blanes and Roarty, 2021). One recent economic analysis of the effects of the Medicaid cap on Puerto Rican health care finds that the fixed “block grant” model that has guided the US federal approach to Puerto Rico’s health care funding – which sets upper limits for federal revenue after which the Puerto Rican state is responsible for its costs – has “contributed to the commonwealth’s fiscal and debt crisis” (Park, 2021: 1). Indeed, the overall share of federal funding for Medicaid in Puerto Rico fell from 17.9% in 2012 to 13.9% in 2019, which is due to the fact that “the block grant is annually adjusted at a rate that fails to keep pace with Puerto Rico’s Medicaid costs” (ibid.). This is far lower per capita funding than even the most disadvantaged US states, and is worsened by the greater limits on covered services and lower provider reimbursement rates, which have spurred the unprecedented exodus of health care providers from the island (Park, 2021). An additional blow occurred in 2018, when the Fiscal Control Board approved several measures that would downsize Puerto Rico’s Department of Health and close Medicaid offices, health sector cuts that echoed similar austerity measures in areas such as education, housing, and energy (Benach et al., 2019).

In that same year, in an explicit attempt to streamline access and “choice” among citizens, La Reforma was once again reorganized under a newer health care delivery model known as “Plan Vital,” overseen by ASES (the PR Health Insurance Administration). Touted as a solution to health care access deficiencies, ASES permitted a much larger group of private health management companies to provide services in PR, but has received much criticism for its bureaucratic barriers, arbitrary denials of coverage, and geographic limitations (Noticel, 2018; Venes, 2019). While the change was thought to reduce overall expenditures through efficiency and broader choice among health management companies, in reality the fragmentation of the system into numerous providers created chaos for patients, who were often forced to change their health service providers amid an unprecedented health sector collapse, and physicians expressed mistrust in the new private entities from abroad (Torres, 2018). Patients with chronic conditions in need of immediate care often found that they had to traverse an impossible terrain to reach a distant in-network doctor, which had not been communicated originally by ASES. Due to its implementation contemporaneous with our study, the problems encountered with Plan Vital – the newest iteration of neoliberal restructuring within the Puerto Rican health sector – resonated with many of the participants in our project, as described further below. An ailing health care system that had been continuously hollowed out by these ongoing processes of neoliberalism and colonization became, in 2017, the same system that would have to respond to the unprecedented climate event of María.

Data and Methods

In our study, we conducted ethnographic observations of health care institutions (hospitals, clinics, and non-governmental organizations) and qualitative semi-structured interviews (SSI) with 67 individuals throughout the island. As our project sought multi-level representation, the SSI participants were divided amongst three levels: health care providers and administrators (42), policy makers (elected representatives) (5); and persons with chronic health conditions who endured Hurricane María (20). Our analysis in this paper begins with the grounded perspectives of persons with chronic conditions (n=20), and draws upon the other 47 interviewees and ethnographic data to contextualize their experiences within administrative procedures and policies. The patient sample involved an even distribution of interviews across rural (50%) and urban (50%) settings and included individuals who reported a range of chronic conditions, including renal disease (15%), diabetes (20%), substance use or mental health conditions (35%), and HIV/AIDS (10%).

We recruited patient SSI interviewees purposively through our ethnographic site visits, an approach that had the benefit of allowing us to identify potential participants organically as we interacted informally with staff, administrators, and community members in the course of our ethnography. For each observation, trained ethnographers from our team, including all co-authors, took extensive field notes, which were discussed and synthesized. Our formal ethnographic observations focused on eight specific case studies, including: three large regional hospitals (one from the urban area of metropolitan San Juan and two from rural areas); three community-based non-profit organizations providing patient services (one urban and two rural); a mental health clinic in the city of Ponce; and a volunteer-based community acupuncture initiative that provides free services throughout PR.

Our analytic process involved an even distribution of data collection tasks across the team, and regular team meetings to track the data collection process, discuss emerging findings, identify opportunities to “follow the data” through additional interviews and observations, and conduct qualitative coding in pairs of each SSI interview transcript to identify themes grounded in participants’ narratives. Narrative segments of transcripts were open coded for emerging themes, which led to the development of a focused codebook through which all transcripts were recoded. All investigators/coders also participated in writing analytic summaries of each interview transcript – one-page summaries that highlighted the key findings from the interview for our study – which were then brought back to the investigative team in regular analysis meetings. The study was approved by the institutional review board at the University of Puerto Rico’s Medical Sciences Campus. All proper names used in this text are pseudonyms, and in some cases, we altered small details of patient stories to further protect confidentiality.

Findings

A crisis of health care access among people with renal disease

Seven people we interviewed were coping with diabetes or renal disease or cared for family members with these conditions. Several health care providers and administrators we interviewed regularly served renal patients as well. An examination of experiences of renal disease and dialysis during and after María provides a window onto the gaps in the health care system, since these patients – who depend on regular dialysis for survival – are among the most vulnerable to institutional deficiencies, environmental conditions, and gaps in health care delivery. In PR, where one in four Puerto Rican adults has the disease, the capacity of the system to meet the population’s need for dialysis services, amidst ever-increasing environmental disasters, would need to grow immensely just to keep pace with demand (Pérez et al., 2015).

“Raquel,” a 64-year-old resident of the capital of San Juan who cared for her 65-year-old husband through the storm, told us a harrowing story of her struggles to maintain home-based dialysis for her spouse in the aftermath of María, and echoes the experiences of many patients. Before the hurricane hit, her husband Ricardo had been receiving follow-up for his home-based peritoneal dialysis at a nephrology clinic approximately an hour’s drive away, and his condition was stable. Peritoneal dialysis involves a procedure that requires a catheter and a gravity- or machine-powered system to filter waste through the abdomen (peritoneum) and can be done at home. The couple received training from nurses before María hit regarding how to ensure his dialysis could be safely conducted while they weathered the storm. Raquel described,

So, for María they quickly activated the protocol and they gave us dialysis medications, the formula for my husband to receive peritoneal dialysis every night. So, he didn’t have to go anywhere, it was with a machine, and they gave us medications in case there was a power outage and it had to be manual… What happened is that we didn’t take it seriously, we didn’t take it well, like we didn’t think that it would be such a long emergency, and maybe we didn’t give it enough importance in the moment. I mean, we did everything well, but we believed it was a passing thing like other storms that had passed through Puerto Rico.

As with many residents throughout the island, with the devastating infrastructural damage, near-total lack of communication, and the extended power outages that ensued in the aftermath, the family was faced with how to power Ricardo’s dialysis machine at home. Raquel’s father and stepmother lived across the street and had a generator, so the couple and Raquel’s two children moved their belongings and all medical equipment to her father’s small home. But then the generator quit, and there was no potable water for cleaning dialysis equipment or keeping Ricardo’s catheter sanitary, particularly in confined quarters with the extended family. Raquel heroically cared for Ricardo, following as best she could the protocols for manual dialysis, which requires delicate gravity-driven fluid exchanges that are only recommended in short-term emergency situations. By the time she was able to communicate with a nurse nine days after the storm, her husband had succumbed to an apparent infection only hours before.

The same day that my husband died the nurse was trying to communicate various times to tell me that a truck would arrive that day or the day before to bring more supplements and give dialysis if we needed anything. But she didn’t hear me, she just kept repeating the same thing, ‘a truck will come there, wait for it between today and tomorrow.’ And I just repeated, ‘Don’t waste your trip. Ricardo already passed away.’ She continued, and didn’t hear me.

The actual cause of death was never specified on Ricardo’s death certificate. After a cursory visit by a paramedic, and without the typical coroner’s investigation, his body was quickly sent to Mayagüez for cremation, two-hours’ drive away, “and they couldn’t tell me when they would give me his ashes.”

Stories like those of Raquel and Ricardo abound among renal patients in post-María PR, and certainly a significant proportion of the estimated death toll of 4,645 occurred in the ‘acute’ period during or immediately after the storm (Kishore et al., 2018). Nevertheless, the historical and ongoing divestment in infrastructure, such as the resources needed by the 48 dialysis centers on the island, hobbled the public health response and resulted in impossible geographic and bureaucratic barriers to vulnerable residents, particularly those in rural areas. “Sharon,” an administrator for the national network of these dialysis centers, explained to our team that one of the most critical challenges facing the estimated 6,000 dialysis patients in the system has been the entrenched geographic disparities in access to dialysis services. In the East following the storm, many dialysis patients had to find their way to Guaynabo, a municipality on the periphery of San Juan, to receive dialysis, a journey of nearly two hours under regular conditions but virtually inaccessible following a major climate event.

In Vieques, a small island to the southeast of PR, the situation is the most dramatic illustration of geographic health disparities among dialysis patients. With a little over 9,000 resident US citizens of Puerto Rican descent, Vieques has been used as a testing ground for munitions and US military operations beginning in the 1940s, resulting in elevated rates of cancer and other conditions in the local population, and serving as a festering metaphor of PR’s colonial relationship to the US. “Margarita” was a renal patient from Vieques who was among 21 dialysis recipients on the island who – when the only hospital on the island that provided dialysis was closed due to storm damage – had to make three trips per week to San Juan and Humacao on the main island via helicopter and plane for fourteen months following Hurricane María in order to receive their life-saving dialysis. She described the arduous dialysis journeys, which began as rescue missions by the US Coast Guard:

We left at 7:00 am and got back to Vieques as 4:00 or 5:00 pm. It was hard, really hard, because, at least in my case, I work and also have a boy with autism who was in school. Even though at that time there was no school, but later when school began it was really hard for me because it was getting up every day at 5:00 am in order to be at the airport at 7:00. Because the group [of dialysis patients] went and returned all together. So, in order to go to Rio Piedras [an area of the municipality of San Juan] on the big island, and from there they picked us up to go the dialysis unit… In that time there were many of us. There were twenty-one of us, and of that twenty-one the number started falling. There were five deaths, and many others went to the United States, and others to the Island [of Puerto Rico] to stay with relatives while they recuperated.

While 21 dialysis patients in Vieques began these regular, exhausting all-day trips after the storm, only two remained in Vieques on the date of our interview with Margarita in March 2019. To this day, Margarita receives dialysis at the new dialysis center in Vieques, which is referred to by patients as “el vagón” [the wagon] because it is only a temporary, rather than the permanent center they were promised by authorities. On our ethnographic observation to Vieques, we discovered the wagon has no permanent doctor on staff; a physician visits the site just once a month. The health care infrastructure in Vieques remains precarious and underfunded; there is only one pharmacy, and while a new hospital has been constructed, it is the only medical facility for 9,000 residents in an isolated setting rife with the environmental wounds of coloniality. Further, the new hospital was built by repurposing the site of the only hurricane refuge for the resident population, leaving the island dangerously vulnerable without a single refuge in the event of a future storm like María.

Sharon explained that the emergency plans for the dialysis centers, which were mandated by Medicare, were not equipped to deal with the surge in dialysis patients post-María, the geographic challenges, and the duration of home-based care that this particular disaster required. For example, even if a patient is fortunate enough to have private insurance, managed care networks often cover dialysis services only at certain renal centers, which became a significant barrier for patients when their usual dialysis center is inaccessible or damaged by a storm. Other renal patients who were only covered under Plan Vital (the newest iteration of “La Reforma”) were even more restricted in available facilities and services. These contextual factors were well beyond the parameters of existing disaster management plans, which dealt more with individual or family level preparedness rather than systemic problems with access or bureaucratic deficiencies.

The dialysis centers have a holistic perspective on patient care, seeking, for example, to address emotional needs and the lack of fresh vegetables and home-cooked meals during and after a storm through food distribution initiatives, in order to help patients to avoid the negative health effects of high-sodium diets that come from overconsumption of canned foods during emergencies. Sharon explained that in spite of their more holistic, person-centered approach, dialysis centers often had to scrape together donations in their attempts to distribute food and provide wrap-around services to needy patients, and did not qualify for loan assistance from federal agencies such as FEMA. Often, aid agencies offered credit to major health care institutions such as hospitals but excluded dialysis centers because they were operating out of rental space, and such loans were reserved for those that held a deed for the property. Yet hospitals who qualified for the aid were often not equipped to deal with dialysis patients during the emergency, having less equipment on-hand and fewer trained personnel. To make things worse, US-based disaster assistance programs were often reluctant to allow dialysis centers to redirect funds earmarked for specific costs toward immediate urgent needs, such as repairs or fresh food for dialysis patients, producing red tape that slowed responses, particularly when the dialysis centers were dealing with the same blackouts that persisted for months throughout the island.

Sharon described her frustration when she was applying for funding from several organizations in the continental US after the storm, who would ask her for mysterious “codes” and electronic forms. “‘Okay, fill in this blank’,” she recalled, mimicking the voice of a funding agency representative she spoke with various times. “But hello! I don’t have facilities to communicate even by telephone… I couldn’t believe it.” She continued, “As soon as I had electricity, I wrote to him and said, ‘I’m sorry I couldn’t find the code! Dear God! Maybe I can’t find the code because here we are all manual.’” Sharon battled these bureaucracies even as local dialysis centers were flooded with fragile patients whose condition was more compromised by a lack of hygiene, gaps in dialysis services, and a diet composed almost exclusively of processed and canned foods. It was not the time to attempt to garner resources through a behemoth global bureaucracy. Instead, she turned to more local resources.

As with many of the participants we interviewed, Sharon and her staff were able to meet the needs of many hundreds of dialysis patients through a dedicated network of community members and organizational volunteers who helped to fill the gaps of essential services. Volunteers provided psychological/emotional support to fragile, traumatized patients, and brought them home-cooked food. These volunteers were also of the communities affected, creating a kind of local solidarity and mutual aid that, according to Sharon, saved lives.

Coping with substance use in times of disaster austerity

In May, 2019 – nearly two years after the passing of Hurricane María – our ethnographic team visited the “Unit,” a non-profit, community-centered substance use rehabilitation and harm reduction program in PR that espouses a holistic approach to prevention, psychotherapy, opioid replacement therapy (ORT), needle exchange, and wrap-around clinical services to persons who use substances and those living with or at risk for HIV. Many of the Unit’s regular beneficiaries are active heroin users, reflecting the larger pattern of substance use on the island, which has long held the dubious position as the Caribbean nation hardest hit by the heroin epidemic, with an estimated 60,000 intravenous drug users (IDU) in PR (Abadie et al., 2019). The organization was initially founded in the early nineties to respond to the need for community-based services for people living with HIV, and ten years later had grown to include an evidence-based harm reduction protocol, including methadone treatment, for substance use rehabilitation that reaches IDU from throughout the island. In a predominantly Catholic country in which highly negative perceptions of drug users circulate (Varas Diaz et al., 2008), the organization provides an affirming, life-saving resource for IDU, particularly those from resource poor or vulnerable populations, such as the homeless or IDU who are also living with HIV/AIDS.

“Juan,” the organization’s director, met us at the Unit, which is located within a large public hospital in Bayamón, an urban municipality on the western edge of metropolitan San Juan. Since it is attached to a major public hospital, the Unit benefits from a wide array of clinical services in close proximity. Juan greeted us and began to give us a tour of the facility, which occupies a spacious area in a wing of the hospital. He explained that the Unit has 30 physicians, psychologists, and nurses, and uses an integrated family and cognitive-behavioral psychology program, ensuring that the patients receive holistic care that includes their kin and social networks as supports for rehabilitation. The goal of the Unit is to treat addiction as a disease, and their presence in the hospital is a sign of its medical model for substance use rehabilitation.

In the aftermath of Hurricane María, the facility was hard-hit, with the fourth floor of the hospital suffering significant damage to the roof that rendered the entire top floor unusable and resulting in systemic leaks throughout the facility. Nearly two years later, the fourth floor was still totally non-functional, and no staff was allowed entry, even as the rest of the hospital, including the drug rehab program, continued to see patients. Juan obtained permission to escort us to the top floor to assess the damage directly. The roof was a toxic ruin; the stench of perpetual moisture combined with visible signs of mold, which did not appear to be hermetically sealed off from the rest of the facility and raised our concerns about the clinical conditions below us. Juan knew little about the larger conditions of the facility or attempts to remediate the damage because the Unit was not allowed to participate in meetings with other staff and administrators from the hospital. He believed this was due to the stigmatization of his program within the facility, which has led to some confrontations with hospital staff who viewed the substance use clinic as the source of alleged thefts in the facility. Juan explained that the patients attending the Unit sometimes reported feeling stigmatized by the broader hospital staff, who often assumed that patients from the Unit are coming into the facility with drugs and drug paraphernalia.

The Unit’s space itself still has structural damage that had not been fully repaired at the time of our observations. Juan showed us a floor-to-ceiling window that had been destroyed by María, and which had been replaced just six weeks before our visit – a full 18 months after the storm. With tragic irony, Juan observed that the replaced window was not impact-resistant – a cost-saving measure determined by someone over his head – and thus was vulnerable to being destroyed again in the next significant storm. In addition, the replacement window had been installed incorrectly and left a visible gap between the window and the floor, permitting the flow of air between hospital levels and eliminating the possibility of privacy in the adjacent rooms. Juan explained that he has expressed his concerns about such temporary, “cheap” solutions to infrastructure, but he had no voice in such decisions, and the Unit continues to function with only stop-gap measures to cope with infrastructural damage.

As mentioned above, there has been considerable analysis in the emerging literature on Puerto Rico’s response to Hurricane María that demonstrates the absence of federal and state support for recovery and reconstruction, including the notoriously inadequate response of FEMA. What has received relatively less attention has been the impact of ongoing health sector reforms that have been implemented during the disaster recovery process, particularly the transition to the new health management approach Plan Vital. Some of the challenges that participants in our study faced after the hurricane pertained to the transition to Plan Vital. For persons in substance use rehabilitation or receiving medically assisted opioid replacement, such bureaucratic and geographic gaps in access to care entailed the risk of treatment abandonment, a return to street-based heroin use, rising risk of infection with HIV or Hepatitis C, and other life-threatening conditions.

“Raul”, a 45-year-old patient receiving harm reduction services at the Unit who we interviewed in March 2019, described how he and other addicts suffered as a result of their inability to access heroin or substance use rehabilitation while going through drug withdrawals during and after the storm:

Everyone who takes drugs and went through the hurricane had to swallow tears, truthfully, truthfully… That thirst for drugs! I don’t care how I have to find it… That’s why there were so many addicts lost, because they couldn’t find a way to satisfy their thirst for drugs [withdrawal symptoms] … While the hurricane was active, there were people that went out to the street because the sickness [withdrawal] didn’t allow them to remain in their homes. The world could have fallen [but they said] ‘I’m going to the street to look for drugs somehow.’

Raul had multiple clinical needs to attend to after María, including a bacterial infection in his leg that severely impaired his mobility, in addition to the substance use services he required at the Unit. But he was one of many thousands of Puerto Ricans who also faced the severe challenges introduced by Plan Vital, which was implemented amidst a devastatingly slow disaster recovery. Regarding Plan Vital, he observed:

That is very bad, it is very bad because supposedly, if I ask for help as an addict, they give it to me, no matter what ‘reforma’ I have. Don’t tell me, ‘we will help you but change your providers to so-and-so because he accepts the card.’ No! They are making us go through an immense job... That’s why I haven’t gone to the program.

For a highly stigmatizing condition such as heroin addiction, such changes in providers were more than simple bureaucratic adjustments; they threatened hard-won relationships with trusted providers, and these relationships were incredibly hard to develop for those addicted to heroin.

“Sonia”, a 40-year-old patient receiving methadone at the Unit, observed that patients like her who were on La Reforma were more vulnerable because “we depend enormously on the system, on treatment, and that became more difficult [after María].” Her main concern following the storm was how to receive her daily dose of methadone so that she could avoid returning to the streets for heroin, which would increase her risk for HIV and Hepatitis C. To receive her methadone treatments, she walked daily from Santurce to Río Piedras – a two-hour walk in each direction – because there was no working public transportation. She went days without eating. She described how restrictions in public sector coverage left patients without needed medications due to gaps in coverage and a lack of attention to the holistic needs of substance users receiving methadone treatment:

[La Reforma] is a problem, to get the medications. Because not all pharmacies accept the plan and you have to find a site that isn’t exactly where you want. You have to look for the pharmacy that is assigned to you or that takes Reforma… I think there is a lot to do to improve patient recovery [in substance use treatment]. Because it’s not just ‘I give you medication and goodbye!’. The patient needs other areas. They come here to take their medications and they leave and don’t have anything to do. They don’t have work. They aren’t given the opportunity, and that results in them not having anything to do and it makes them return to using substances… It’s all a circle.

For substance users, the existence of rehabilitation and treatment programs like those offered at the Unit were essential, but these programs were often distant and difficult to access, involving bureaucratic barriers that were simply insurmountable. In addition, while the Unit served patients throughout the island, during times of disaster it was nearly impossible for distant patients to access their services, leading many to cope with their addictions however they were able.

Accessing HIV prevention and treatment: An exception to bureaucratic red tape?

In December 2018, we visited the community clinic we call “Community Health” located in an area of San Juan that was hard-hit by María. The clinic is one of the primary sources of primary health care for LGBTQ populations and people living with HIV/AIDS, with a significant domestic and international funding base. The area in which it is located is economically depressed, first as a result of the ongoing economic crisis, and subsequently as a result of Hurricane María, which led to significant structural damage in the area and extensive flooding with sewage-filled waters from a nearby canal. Indeed, through another interview conducted by our team, we were aware that this organization had suffered significant flood damage that had affected their capacity to deliver services, but that they had successfully adapted the space to continue functioning and serving the vulnerable population of people living with HIV. Today, the building for Community Health stands out in this neighborhood as one of the nicer, more apparently stable, and clean, structures in the area.

Immediately following the storm, the clinic’s bottom floor was inundated with three feet of brown water, leaving all clinical services on that level – which included an HIV testing and treatment area and a dental clinic – completely non-functional. Through a herculean effort by the dedicated staff, many of whose personal homes had also been destroyed, much of the clinic was restored to working order just two weeks after the storm passed, and a new generator was purchased to replace the one that had been destroyed by the flooding, allowing patients to receive nearly continuous service as repairs were simultaneously made throughout the clinic. Staff described in detail how they constructed new spaces within the multi-level structure to attend to patient flow while repairs were made: they converted the front balcony of the organization to the reception area to save indoor space; the immediate entryway area was adapted to help patients with childcare; the kitchen became repurposed for the nurses’ station. Patient volume remained high during this period, making the reduced facilities on the upper floors much more densely populated than usual. All rooms were multipurposed to attend to these needs. Food for patients was provided by a local restaurant owner, which added the new service of food and water provision to the clinic’s tasks. The clinic also developed agreements with a local pharmacy and nearby dental clinics to provide some overflow spaces for clinical services. Staff members used Facebook postings and voicemail recordings for patient communication and coordination during this period since cell reception was intermittent at best. They visited specific Wi-Fi hotspots to retrieve messages from fellow staff members and patients. Just three months after María, all clinical services, including those on the extensively damaged lower level, had been resumed in a renovated space.

How are we to understand the relatively rapid recovery and financial adaptability of this community clinic, located in a depressed neighborhood suffering from extensive unemployment and structural abandonment? “Monica”, the Director of the organization described how the organization managed their efficient recovery, and her narrative provides some context. None of the needed renovations were paid for by public funds or by FEMA, and instead were absorbed by the organization’s own budget. Monica visibly rolled her eyes slightly when we asked about FEMA, exclaiming, “No! FEMA has done nothing!” She noted that they had spoken to the CDC about support, but all they did was send out “repeated questionnaires and assessments” to the organization in response to their request for grant support, rather than providing the sheer financial support necessary to rebuild. In the absence of public funds, and in a remarkable show of solidarity, the Executive Board of Community Health – which consisted of a group that was “very community-oriented and committed” – led a fundraising campaign that brought in around three-quarters of the $200,000 budget that was required to clean up the space, do the needed repairs, and buy a new large capacity generator system in order to be less reliant on the grid in the event of a future extended power outage. Importantly, the clinic was doing well before storm, and was expanding. The organization enjoyed a slight surplus in its budget that gave them an advantage when they had to re-budget to cope with the damage to its infrastructure after María. They had established international and local networks with other organizations, which also greatly assisted them in recovery, and a dedicated board was actively involved in writing grants to help defray costs. “Everyone was reaching out to everyone”, Monica summarized.

Indeed, the HIV patients with whom we spoke were in many ways the least clinically affected of the participants in our study, having been well-informed of the need to obtain several months of medication in preparation for the storm, and most of whom had achieved undetectable viral load through successful antiretroviral treatment before María. “Manuel”, a 27-year-old living with HIV, explained that “I had gotten a bottle [of my medication] for the month of September, and the [community HIV clinic] said that the prescriptions should be repeated.” Following instructions from his case manager, Manuel stocked up on his medications: “So I took the opportunity to get the prescriptions for September and October…so that… if they didn’t give me the medication or something I would have at least those additional bottles.” Manuel observed that none of his acquaintances with HIV had faced problems maintaining their HIV treatments or accessing clinical services in the community HIV clinics, most of which remained functioning despite the infrastructural damage, in some cases installing special clinical tents outside their walls to attend to needy patients. Cesar, a 43-year-old patient from a more rural area west of San Juan, indicated that his primary worries involved the geographical barriers to accessing his HIV clinic, where he received anti-retroviral treatment and follow-up. He was anxious after the storm that he would have to go to a local clinic in his area to receive services due to the problems of transportation to San Juan:

My condition is not like saying I have diabetes or I have to, you know, have an operation. You understand?... Talking about this [HIV] is very difficult and it will always be something very difficult to talk about. Because right now I treat myself here for this condition. If for “X” or “Y” reason I had to go to the [rural clinic] to explain the situation, it would be something very difficult because I have to … explain I have this condition … It is something very personal. I don’t like talking about it, do you understand?

Despite his fears of potentially being stigmatized if he were forced to access a non-HIV-specific provider in his area, he felt well-supported by the HIV clinic where he received care (he had an undetectable viral load) and was grateful for the careful case management of his HIV providers, which allowed him to access La Reforma and facilitated his reserve of medications prior to the hurricane. Local pharmacies also were able to provide manual approvals for his HIV medications even during blackouts, and Cesar never felt abandoned in his treatment.

Discussion

After the impact of the historic category 4 Hurricane María, some of the most devastating effects on human suffering were felt among persons living with chronic conditions, such as renal disease, substance use addiction, and HIV/AIDS. While health conditions that require regular, life-sustaining access to technology and medical procedures, such as dialysis, are known to be most affected by natural disasters in general (Arrieta et al., 2008), PR’s particular manifestation of catastrophe was largely predetermined by what Yarimar Bonilla (2020) calls “the coloniality of disaster:” its disadvantaged structural relationship to the US and the resulting austerity and scarcity of health care services the population has increasingly endured. With a health care system that is in deep fiscal crisis due to continual cuts in federal Medicaid assistance, historical trends toward dismantling safety nets and privatization, and a mass exodus of health care personnel from the island, chronic disease patients were already facing abandonment by the health system prior to the storm. The “natural” disaster of María only made the “unnatural” disaster more visible (García-López, 2018).

Our research encountered numerous expressions of the ‘coloniality of disaster’ in the health sector. We repeatedly heard stories of bureaucratic barriers and red tape that resulted in a pervasive mistrust of US-based institutions involved in disaster aid and health care management, resulting in the need to look inward and rely on local volunteers and systems of mutual aid. Dialysis centers that could not access FEMA assistance and whose immediate needs went beyond budgeted expenditures – often involving the provision of home-cooked food and emotional support services – were rescued by a dedicated group of volunteers. Those struggling with heroin addiction continued to rely on the underfunded harm reduction rehabilitation program – which still faced structural damage two years after the storm – but encountered gaps in insurance coverage and geographic barriers that resulted in some returning to street-based heroin use.

However, as Bonilla and other analysts (García López, 2020; Klein, 2018; Massol-Deyá, 2020) are careful to detail, the coloniality of disaster also contains creative resistance as colonized peoples invent new ways of asserting self-determination in otherwise suffocating political environments. Our findings related to HIV/AIDS service provision in the aftermath of María provides a somewhat different narrative from the cases of dialysis and substance use rehabilitation. Globally, institutional responses to HIV/AIDS have been described as ‘exceptional,’ in that the combination of intensive community organizing around LGBTQ issues, relatively higher HIV/AIDS funding amongst public sector and multi-lateral aid organizations, legislative efforts to uphold the right to antiviral treatment, and health access initiatives have enabled the emergence of highly organized and well-funded transnational networks of HIV/AIDS care (Moyer & Hardon, 2014). In our findings regarding the case of Community Health, we see some indication that broad transnational networks, relative fiscal stability, and an activist board enabled an ideal response to an unprecedented disaster even in the absence of public funds for disaster recovery. Surplus funds could be reallocated to urgent expenses during the immediate crisis, while established networks of allied organizations and donors – such as community pharmacies and local dental offices – could be activated to meet patient needs. This despite the lack of support from federal disaster recovery agencies such as FEMA and the CDC.

While by no means a revolutionary resistance, the case of Community Health and other local initiatives gesture toward a practice of mutual aid and community solidarity, a collective auto-gestión (self-determination) that autonomously invents new practices of sovereignty and ethics in the face of colonial abandonment (Bonilla, 2020). Set in the language of slow emergencies, these practices do not articulate an emergency claim in the idioms and temporal imaginary of the ideal disaster subject, the proper(tied) individual of European modernity. Rather, their emergency claim calls into question the dehumanizing logic of colonial disaster management and its bureaucratic violence that secures the future for some subjects by actively denying this futurity to others.

Taken together, our research suggests the need for expanded critical engagement with the ‘slow emergency’ of colonial emergency management, both in contemporary colonies such as PR and formerly colonized states whose formal governance institutions were forged around coloniality’s racially uneven distribution of futurity. This is particularly pressing as global environmental change layers environmental catastrophe on top of existing slow and fast emergencies of colonial dispossession, anti-Black violence and neoliberal abandonment, in ways that amplify the bureaucratic violence of red tape. Our research illustrates that the coloniality of disaster in PR continuously delays, defers, and forestalls the promised return to post-disaster normality, creating a nation for whom ‘recovery from María’ seems ever-more distant. Puerto Ricans have lived the reality of lives led in a much longer and intensifying emergency, of which colonial emergency governance is a primary source of the dilemma.