Strategies To Maintain Wellness Among HIV Positive Former Heroin Users: Uncovering Resilience

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 semi- structured 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

1 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 co- occurring 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;

2  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 well- developed 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.