When “the Cure” Is the Risk: Understanding How Substance Use Affects HIV and HCV in a Layered Risk Environment in San Juan,Puerto Rico

La Cura: When the Risk Is the Cure

Sitting at his desk in the shooting gallery, Gelo prepared a hit of xylazine, a horse sedative and/or heroin substitute unique to the island, for his next “patient” (Reyes et al., 2012; Torruella, 2011). The informal interview began by DH and Gelo talking about their mutual love of salsa. Then, as if on cue, they sang the chorus to a 1980s salsa classic:

Amargura, señores que a veces me da, la cura resulta más mala que la enfermedad. [Bitterness, gentlemen that sometimes I feel, the cure is worse than the disease.]

Legendary salsa singer Frankie Ruiz’s song titled La Cura put a rhythmic beat to a social and cultural phenomenon that continues to fuel the HIV epidemic in PR today: injection drug use. The icon’s fate? Substance use followed by HIV-related death. For many Puerto Rican people who inject drugs, curándose [curing oneself] still comes at a grave cost.

Gelo, a longtime substance user and shooting gallery administrator in his 50s, explained why Puerto Ricans call copping drugs, La Cura:

It’s because the body craves the drugs and when people start feeling the symptoms of withdrawal they start to feel sick and the drugs cure that feeling.

We often heard PWUD describe La Cura as a priority, an urgent matter—“me tengo que curar” [I have to cure myself]. At $3 to $5 per hit, they cured themselves an average of seven times per day—a figure reported by most of the syringe exchange clients we encountered in the field and consistent with the literature (Finlinson et al., 2006; Reyes et al., 2012). As consumers of adulterated narcotics, many Puerto Rican PWUD use xylazinein addition to or in lieu of heroin (Reyes et al., 2012; Torruella, 2011). The xylazine “cure” results in physical deterioration when the syringe injecting the drug ruptures the skin to penetrate the veins resulting in bodily lesions and subsequent scars (see Figure 2).

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Figure 2.

Lesions on the skin, the physical evidence of injection drug use with xylazine.

Beyond the physical, La Cura was also associated with other harms such as homelessness, HIV and HCV infection, fractured social and institutional ties, and stigma. A homeless substance user panhandling at a busy intersection in Condado (an affluent and touristic neighborhood in San Juan) summarized this reality with a telling sign (see Figure 3). The seemingly disparate lives of Frankie Ruiz (the singer) and Gelo (the shooting gallery “administrator”) suggest that substance use affects Puerto Ricans of all socioeconomic backgrounds. This was evident in the shooting galleries and puntos [drug-dealing spots] and throughout our fieldwork where los usuarios [substance users] became known to us as the sisters, fathers, coworkers, and church parishioners at the shooting gallery in “El Guano” or outside the local bakery in Trujillo Alto. During the day, they washed windshields at the traffic light and slept under the highway at night. Helping DH make sense of this, Gelo explained,

Drugs do not discriminate. . . . I service doctors and lawyers in the upper echelons of society and “el guardia” [the police officer/security guard] that comes in to get their fix.

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Figure 3.

“A cry for help” through many “signs”—The message and the physical manifestations of his addiction in the form of track marks and abscesses.

Nevertheless, some distinctions were made between casual users and addicts:

I met a man in his mid-30s who smiled generously and spoke to me in English. He said he worked at [a luxury hotel]. He admitted to casual drug use but made a distinction between his habit and that of “addicts.” He wasn’t homeless, nor jobless; he was physically in shape and seemingly in control. Many others had passed that threshold and were deeply ingrained in the drug subculture. (YF fieldnote)

We learned that people take on various roles in the drug market economy. Some people sold, while others used; and at times, it was just a matter of time before a seller became a user:

Carlos bleakly described the options for people growing up in Vega Baja. He said some sell drugs or engage in drug-related crimes and others succumb to use. He pointed out a former schoolmate who was also 26 years-old and making his way up the hill to the shooting gallery. In an interesting parallel, he described his former engagement with firearms, crime and selling drugs and said that he stopped 3 years ago once his child was born. Carlos is fortunate to have found steady employment as a driver and he also runs a small trucking business. He noted that some people relapse into the drug lifestyle if they find themselves “broke.” (DH fieldnote)

Involvement in the drug market economy was only one driver of substance use. Other structural drivers were related to poverty, education, employment and housing, as well as a broader political history of colonialism and PR’s commonwealth status vis-à-vis the United Status.

Homelessness and Social Dislocation Among PWUD

Homelessness and social dislocation were regularly intertwined with substance use. Some participants described homelessness as a main driver of substance use, while others noted how the downward spiral caused by using led to homelessness. The transience caused by the loss of contact with service organizations and distance from sources of social support also had significant implications. In the field, ICI staff pointed out discreet places that homeless PWUD occupied:

The trained eyes and experience of ICI’s staff helped illuminate the area’s otherwise invisible population; those that found shelter under the sky. Their makeshift abodes were made from cardboard, meticulously stacked milk crates, the front gate of a pink doll house; mattresses set in the underpass of a highway, and donated blankets ironically stacked alongside storefronts selling paint and expensive home décor in strip malls. (YF fieldnote)

Homelessness was a common experience among the PWUD we encountered:

Miguel is homeless and said that drugs are sometimes a function of homelessness; that is, it’s not necessarily the case that drug users are homeless but that those without homes become drug users by virtue of being on the street. He explained that there are very few shelter options and no middle ground between being housed and being on the street. (DH fieldnote)

One public health professional described the virtues of “harm reduction housing”:

“People start using drugs many times here because they’re homeless. You need to address the broader issues of housing, and not just supportive housing or transitional housing, permanent housing right off the bat, which means harm reduction housing. . . . If you take an individual who is injecting chronically in the street, and has HIV, hepatitis C, and a lot of risk behaviors—you put him in housing, a permanent housing with a lot of support, a lot will stabilize, and a lot of the risk starts coming out of not only the network but that individual and the community.”

Lack of stable housing and economic hardship also produced challenges for PWUD in maintaining steady ties to people, places, and services. A community-based service provider described how transience among the target population affected loss to follow-up:

“You would go visit someone and the individual; they don’t live there anymore. It seems like people change their cell phones and numbers every three months . . . [Eventually] there’s no way of reaching that individual.”

Local mobility on the island was partly attributable to shifts in the drug market where PWUD traveled to different neighborhoods in search of available and/or higher quality drugs:

Izzy, a fellow Nuyorican, explained to me that the two “puntos” in the area were shut down because there was a shipment of heroin that was seized by authorities. He said that the only drug available on the island was horse tranquilizer [xylazine]. (DH fieldnote)

Jorgie explained that he travels to where the drugs are good. He usually finds out by word of mouth and will sometimes “cop” in nearby neighborhoods if the supply is not as good near where he typically stays. (YF fieldnotes)

Participants also described mobility between PR and other major cities in the mainland United States via the Puerto Rican “air-bridge” in order to access SUD treatment, procure educational and work opportunities, and maintain familial ties (Deren et al., 2007; Robles, Matos, Colón, Deren, et al., 2003):

I had a brief conversation with a friendly gentleman in his 50s who said that he had spent time in Chicago in a drug treatment facility where he successfully quit for over two years. Tonight, he was back in the shooting gallery and said he started up again shortly after returning to PR. (DH fieldnote)

Family strife, trauma, and violence were common facets of life for our participants; many encountering significant barriers to accessing institutional and social support. Familial support and communication were often described as limited or nonexistent. Many severed ties with family members because of the shame of being seen “this way,” referring to various stigmatized identities such as being a substance user, homeless, and/or HIV-positive:

The man adjusted the shirt he had just gotten from our van, buttoning the shirt, adjusting the collar and clearing his face as if to be decent for his brother on the [phone] line. [An ICI employee] passed the phone and they said hello for the first time in 9 years. They caught up asking about loved ones and their whereabouts. The brother must’ve asked him how he was doing and when he said, “fine, just running the streets.” Then the brother asked why he had not been back to Isabela (where their family is from) and he said he didn’t want them to see him with his llagas (the lesions on his skin). He adjusted his shirt some more as if to maintain his presentability and then asked for $30 via Western Union. (DH fieldnote)

Risk by Drug Site

Shooting galleries function as “hubs” that draw a wide range of actors. The venues varied in form and location from vacant houses to makeshift shacks behind parks and in open plots of land in residential communities, to tents set up in construction zones or repurposed infrastructure in utility plants. Shooting galleries are organized spaces with rules that govern conduct and roles among patrons and providers (Bourgois, 1998; Friedman et al., 2002; Robles et al., 1998). One shooting gallery “administrator,” Chela, posted her rules that emphasized cleanliness and order (see Figure 4) and made efforts to reduce harm by taking care of herself and her “clients”:

I asked Chela about her HIV status and she said that she was negative and tests regularly. She also makes sure that the conditions in her shooting gallery are sanitary to keep her clients safe. (YF fieldnote)

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Figure 4.

Rules posted in a shooting gallery.

Chela was afraid of needles and did not herself inject drugs. However, administrators like Gelo managed the space and provided other key services:

“I’m like a nurse or a doctor,” Gelo said, as he explained how he helps his clients prepare the drugs they will consume by “cooking” solid substances into liquid form and then he helps inject the users for a small fee—a portion of the drugs. He shares the drug paraphernalia including needles. I asked if he knows if people are sick [meaning are HIV- or HCV-positive] and he said that he usually judges by whether or not they “look healthy.” (DH fieldnote)

Many of the people we encountered also admitted to sharing needles, but most did attempt to ensure that they got the first hit at the syringe. As Jesús said, “el que va después de mí, allá ellos” [whoever goes after me, that’s on them]. (YF fieldnote)

The common practice of sharing needles in shooting galleries thus increased risk of HIV/HCV transmission. Though the syringe exchange services were important in risk reduction, the risks were not completely eliminated by these efforts.

Risk by Stigma

Despite IDU being a known risk factor for HIV and HCV transmission, there was a palpable silence around the topic of HIV among those interviewed. As part of the syringe exchange outreach activities, we noted the majority of PWUD self-reporting as HCV-positive, but a mere fraction said they were HIV-positive or coinfected. Some were unaware of their status, while others were reluctant to disclose. During one field site visit, we observed a mobile unit offering free, rapid HIV tests along with educational pamphlets. Whereas on that day the harm reduction team processed several syringe exchange transactions in just over an hour, the testing team had not one patron. Though hard to generalize based on this brief observation, it was revealed in our interviews that HIV and HCV testing was infrequent among participants.

Moreover, the experience of living with HIV and HCV and not being engaged in medical care and treatment was common among participants:

In time [Gelo] disclosed that he has HIV and HCV, but has not seen a doctor in quite some time except to receive wound care at a local hospital. Shifting uncomfortably in his chair, Gelo asked me to lower my voice as I asked more questions about his HIV status and care. I did and asked if he had ever been on medication, he said “no” and explained that he did not want to be known as “sick” given his role in the shooting gallery. (DH fieldnote)

He was not alone in knowing his status and lacking care:

Bent over with a needle full of a brown liquid substance clenched by her front teeth, Anita searched diligently through mounds of litter for syringes to exchange. . . . I had a chance to speak to her and she told me she was HIV-positive, but that it had been a while since she’d been to a doctor. The daily grind of substance use had consumed her; tending to her health was not a priority by comparison. (YF fieldnote)

Substance-use–related stigma permeated medical care. One medical provider discussed his mistrust of patients based on their history of mishandling medications:

“I remember when this medication became available only to those who were sick or dying. People who had HIV that were not sick or at the end of the spectrum, they were not allowed to have the medication, so there was a big demand for black market. So the “junkies” would go out—and excuse me for using the word, sorry, it’s not derogatory, it’s just the way I was raised with that term—they used to go there, get the medication, and at the next corner, they would sell it for $10 or $20 to whoever, you know, that needed it or maybe they would sell it.”

This cynical sentiment was not lost on the PWUD we encountered, even those of known HIV-positive status. Many refused to receive regular medical attention and adhere to an HIV treatment regimen because they felt “discriminated against” and “marginalized” in clinic and hospital settings. However, there was at least one instance in which a participant described himself as virally suppressed:

Tito self-identified as HIV-positive. When I went over to inquire further, he was talking to [ICI’s resident physician] about having his numbers under control and taking meds. I eventually sat on the ground with them to ask a little more but he noted that he had had some lab work done recently and that he was all clean, “no HIV, no Hep C,” a completely clean bill of health, meaning that he was virally suppressed. (YF fieldnote)

Tito had initially been referred to services through the ICI team during their street outreach activities. Having built a rapport with ICI’s volunteer physicians, he followed up during their weekly night rounds.

Risk by Shortage of Services

The challenges with seeking and maintaining medical care as well as the lack of housing mark key service shortage areas. In addition, there were few accessible and effective SUD treatment programs available to those in need of them (Leff et al., 2017). Furthermore, the existing treatment options often lacked an evidence-based approach as explained by an upper level regional policy director:

“The faith-based or religious community who sort of lean towards providing services for the broad population of drug users do not place enough value on evidence-based practices, but rather follow a more non-scientific, spiritual [approach] that has no bearing on the outcome of care.”

Participants themselves expressed frustration with the limited SUD treatment options:

One after the next, when I asked about medical care and doctor’s visits, they instead geared the conversation to “detox narratives.” They talked about wanting to get clean and expressed a sincere frustration with the current options, often citing [religious organization’s], detox program as too short and their housing program as chaotic, making their transition difficult with the palpable presence of drugs in the environment. Costs and the difficulties completing Medicaid paperwork were also described as obstacles to enrollment. (DH fieldnote)

For PWUD, this equated to a vicious cycle of using, temporary cessation and relapse:

Pito was tired, his words and body language reflecting a sense of exhaustion. He felt trapped in this cycle—the drug dependence had taken over his life and he wanted to relinquish it. He’d tried and relapsed. He mentioned the few resources available on the island and the lack of homeless shelters and decent detox/drug treatment options. He was stuck. (DH fieldnote)

The reasons for the lack of services and loss of contact varied and were due to transience among PWUD (as previously described), the ineffectiveness of some treatment regimens, and loss of funding—especially with a worsening economy on the island.