Strategies to maintain wellness among HIV positive former heroin users: Uncovering resilience
Nelson Jose Tiburcio, Ph.D.
Project Summary/Abstract
This qualitative study focuses on the strategies that 20 HIV+ former opioid users employ to maintain
wellness. HIV+ former opioid users who are addressing medication management, depression, anxiety
and other emotional issues, amid the difficult process of opioid recovery, face multiple challenges not
only as individuals but as members of families and social networks. The abuse of opioids, particularly
heroin, (but including a number of pharmaceutical pill and even more recent “syrup forms,” such as
“Lean,” codeine, Demerol, Oxycontin, Vicodin, Percocet, morphine, etc.) is associated with high relapse
rates, infectious disease susceptibility, criminal justice involvement, and social disharmony. Qualitative
researchers have developed technologies for recruiting and investigating the drug-using careers of
active users, (Curtis et al., 1995; Galea et al., 2003; Davis et al., 2003) but have not often documented
patterns of non-use. We anticipate recruitment to be difficult given the focused recruitment criteria.
Tiburcio’s coordination work on prior studies documents that those meeting criteria access multiple
services both to initiate and maintain drug abstinence and to cope with HIV (Brook et al., 2008; Sacks
et al., 1998). Accessing these multiple services, in combination with networking and subject referral
efforts in Designated AIDS Centers (DACs) throughout NYC, will broaden these comprehensive
recruitment efforts.
A. Specific Aims
The specific aims of this one-year research study are to:
1) Identify through in-depth qualitative interviewing the strategies 20 former male (n=14) and female
(n=6) users employ for HIV medication management, wellness care, successful opioid abstinence, and
management of co-occurring physical and mental health conditions. We will focus on day-to-day
techniques in their personal and professional lives including:
(a) interactions with their loved ones, significant others, children and other family members;
(b) if applicable, interactions with care providers, social service agencies and institutions
relevant to issues of medication management, emotional well-being and overall care;
(c) interactions with any formal or informal treatment, spiritual or recovery based organizations;
(d) interactions with friends and acquaintances;
2) Identify similarities and differences in challenges and patterns of coping strategies between
males and females, given that women may experience more duties within households and fewer
opportunities in either legal or illegal economies; and
3) Document with standardized instruments [Beck Depression Inventory (BDI), and Manifest
Anxiety Scale (MAS)] the co-occurrence of depression and anxiety.
In screening, respondents will self-report HIV positive serostatus, (which we will verify with
documentation at study entry), report they have maintained five or more years of sustained abstinence
from heroin use, and that, when actively using heroin/other opioids, they did so on an almost daily basis
for a minimum of a year (meeting DSM-IV dependence criteria). Data will be collected utilizing a semistructured conversational interview, in combination with more structured research instruments for each
individual, and analyzed using a combination of qualitative and quantitative methods. This study, the
first in an ongoing series of recovery studies, is a first step in efforts to design and evaluate modified
interventions for HIV+ substance users.
B1. HIV, US, and New York City opioid users. For nearly one-third of Americans infected with HIV,
injection drug use (IDU) is a risk factor. Drug abuse has been cited as the fastest growing HIV vector in
the United States (Center for Disease Control and Prevention [CDC], 2004). Recently, fully 22% of
documented US HIV cases report IDU as the primary transmission route (CDC, 2009). In 2005, an
estimated 22,000 IDUs in New York City (NYC) were living with HIV, the largest number of any city in
the US (New York City Department of Health and Mental Hygiene [NYC DOHMH], 2006) highlighting
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the significant need to understand successful abstinence for those that achieve it. The current
application focuses on HIV+ former opioid users in New York City (NYC), the majority whom are former
IDUs.
B2. Prevalence. HIV. The current study will recruit former users in two highly affected NYC
neighborhoods, East Harlem and the South Bronx; each of which not only has a large population of
IDUs, (Brook et al., 2008) but also have a range of HIV and substance recovery treatment services.
Tragically, both neighborhoods also contribute to the highest HIV prevalence and incidence rates in the
city (NYC DOHMH, 2006).
Substance use. In recent years, researchers and medical personnel have expressed alarm at
the resurgence of opioid availability, particularly in the form of Oxycontin, Vicodin and other commercial
pharmaceuticals that are increasingly available on the internet (O’Shaughnessy, 2009; Tiburcio,
2006b), coupled with highly potent street heroin (National Drug Intelligence Center, 2003). These purity
levels signal that intravenous use is no longer necessary as an optimal administration route. Sniffing
and smoking the drug (both presenting more socially acceptable administration routes) are now also
effective means of ingestion (NIDA, 2009, McCabe et al., 2005).
HIV and Drug Treatment. A variety of HIV, drug treatment programs and treatment modalities
(community based, hospital-based, residential, methadone, drug-free outpatient) are located in these
neighborhoods and, as reported by members of the target study population, these services are
accessed and used frequently (Strauss et al., 2009; Strauss, Tiburcio et al., 2009). The key question
remains, what works for some, yet not others?
Co-occurring Conditions. We anticipate that this sample, although small, will have experienced
many of the documented physical (abscesses, skin lesions, severe withdrawal), emotional
(depression), and social (stigmatization, isolation) challenges of HIV amid the challenges of maintaining
themselves opioid-free.
B3.Challenges of co-occurring conditions and recruitment. HIV+ individuals experiencing
sustained abstinence from opioids often report additional mental health complications; some are due to
exposure to potentially toxic drug regimens and combination therapies (Ingersoll, 2004). These
complications include mood swings, generalized anxiety disorder, and overall malaise, but also physical
maladies resulting from antiretroviral drug-related complications. More so than other drugs of abuse,
opioids, especially when used intravenously, are associated with high rates of HIV infection and
transmission risk, as well as other infectious diseases such as hepatitis, tuberculosis, endocarditis, and
the hepatitis C virus (HCV) (Hagan & DesJarlais, 2000; Sullivan & Fiellin, 2004; Vlahov et al., 2001;
Strauss et al., 2009), with the latter reaching epidemic proportions among IDUs. To manage HIV
seropositivity and former IDU, patients and their caregivers may use strategies to reduce patient
exposure to these drug regimens, such as varying drug dosing schedules or combinations. (Kumar and
Encinosa, 2009; NYC DOHMH, 2006; Springer, Chen & Altice, 2009). Unknown is the how these
individuals manage HIV treatment and care, in light of their sustained abstinence efforts, nor how these
interactions are negotiated and sustained over time; the need to learn from successful copers in order
to improve future interventions is clear (Vlahov et al., 2010).
B4. Adjustment challenges facing HIV+ individuals: Managing medical treatment of HIV and cooccurring disorders. The literature has documented adjustment challenges facing HIV+ individuals
(Springer, Chen, & Altice, 2009; Siegel & Krauss, 1991, Tiburcio, 2008; Friedman et al., 2004;
Friedman et al., 1998). The present study will examine these challenges, including but not limited to:
 Psychosocial adjustment to diagnosis, including decision-making about initial disclosures;
subsequently managing one’s emotional reactions to diagnosis, reassessing life trajectory;
 Managing risk and decision making for self and sexual or substance use partners;
 If disclosures take place, managing others’ reactions, stigma and related issues;
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Access to care, extent of disclosure of risk use history to care providers/significant others;
Ongoing decision-making about early or later treatment;
Complex treatment decision-making, (e.g., entering clinical trials, opting for genetic assay,
management of side effects, potential multiple drug interactions of co-occurring disorders),
symptom management; access to managed care amid diminishing economic options.
B5. Availability of potentially effective treatment for opioid use. While there are some welldeveloped treatments, that can initially treat opioid use including rapid detoxification, long-term
therapeutic community treatment, and pharmacotherapy, (most notably opioid agonists, methadone,
buprenorphine and antagonists, naltrexone), no method of treatment has been determined to be
superior in producing a lasting, sustained period of abstinence from opioid use (Substance Abuse and
Mental Health Services Administration- SAMHSA, 2002b). Yet, studies examining long-term abstinence
from opioid use rarely focus on the process as experienced by the recovering individuals themselves;
an important consideration given that former users must contend with intensive marketing efforts of
drug sellers, networks of former drug using associates and various relapse triggers (Maruna, 2001;
Terry, 2003). Former opioid users must contend with:
 Managing adherence to treatment regimens;
 Negotiating relapse triggers;
 Negotiating re-immersion and contact with “people, places and things,” often reminiscent of
drug seeking behaviors;
 Negotiating the criminal justice system, the “drug-crime connection,” with its own sets of
respective triggers (Terry, 2003);
 Negotiating the “stigma” of no longer “being in the game,” that is, abstinence from opioids as a
goal is “uncool.” Reconciling “new life” with the stigmas associated with co-occurring public
health issues such as HCV (Herek et al., 2002; Tiburcio, 2008).
C. Significance. Although IDU and substance use remain as strong contributors to the US HIV
epidemic, and opioid use has been cited as having a negative effect on HIV treatment adherence
(Batkis et al 2010; Ingersoll 2004), little is known about the daily strategies successful HIV+ opioid
abstainers employ to maintain wellness. The results of this pilot study, conducted in New York City, are
well suited to begin addressing the mechanisms whereby HIV+ individuals sustain abstinence from
opioids. In-depth study of their tactics and strategies, and documentation of mental health issues, may
contribute to ecologically sound interventions for other HIV+ opioid users; providing a framework to help
develop an agenda for instituting and implementing policies and effective treatment protocols to
enhance long-term recovery. Ultimately, HIV+ individuals that are successful in maintaining wellness
and sustaining abstinence can provide critical information for developing appropriate interventions for
members of this population, their families, and social networks.
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