Peter Meylakhs Samuel R Friedman Pedro Mateu-Gelabert Milagros Sandoval Nastia Meylakhs

1. How taking care of oneself could help long term injection drug users remain uninfected with HIV and HCV Peter Meylakhs Samuel R Friedman Pedro Mateu-Gelabert Milagros Sandoval NastiaMeylakhs

2. We would like to acknowledge • NIDA project R01 DA DA019383-01A1 Staying Safe: Long-term IDUs who have avoided HIV & HCV; Fogarty International Center for National Institutes of Health (Grant # D43 TW00233) • Dozens of participants in this study • Colleagues and participants who have died of HIV/AIDS and hepatitis C over the years

3. Background: • Various studies show that though prevalence of HIV and especially HCV is high among injection drug users in New York, about 30% remain uninfected with either virus despite long-term drug use. • The Staying Safe study sought to formulate grounded hypotheses about how they managed to do this.

4. Design overview • The Staying Safe Project wants to discover how IDUs who have been injecting drugs for 8 – 15 years nonetheless remain antibody negative for both HIV or HCV. • We invented a technique that can be thought of as a Positive Deviance Biographical Control-Case Study to do this. • We recruit infected positives as Controls, uninfected negatives as Cases • Qualitative comparative analysis of their life histories to develop grounded hypotheses about how “double-negatives “stayed safe.”

5. Methods and rationale are described in: • Friedman, Samuel R; Mateu-Gelabert, Pedro; Sandoval, Milagros; Hagan, Holly; Des Jarlais, Don C. (2008). • Positive deviance control-case life history: a method to develop grounded hypotheses about successful long-term avoidance of infection. • BMC Public Health 2008, 8:94 (20 Mar 2008).

6. More on Design and Procedures • The study subjects were 35 long-term drug injectors, of whom: • 21 were antibody negative for both HIV and hepatitis C • 3 double positives • 11 positive for HCV but not HIV.

7. Results • Most double-negative informants “took care of themselves,” both as physical bodies, and as social selves by successfully integrating and performing various drug using and non-drug using roles • Ugly Duckling explains: ‘try to get high successfully. Getting high without getting broke, without getting sick, without people telling you what the fuck to do. Be successful at getting high. Getting high and still maintaining, your appearance, taking care of your bills, and you stay with money in your pocket, and you still have all the heroin…’

8. Taking pride in non-drug using roles • These informants not only managed to avoid high-risk practices but also took pride in maintaining their worker and family roles (in legal or illegal economy). • Wards Island tells about his work:‘I’m a good carpenter. And we’re talking about ten thousand square foot home and up. They are like ten million dollar homes and up and you got a fucking heroin addict fucking running the whole show…’ • Barber is proud that he was able to take care of his family:'To me, if I was working, then it was okay, cause I was still putting money in my pocket and I was still taking care of my family…That was the important things for me. Maintaining a proper image and taking care of them.’

9. Boundary work • In addition, for maintaining a respectable self, double-negative informants do ‘boundary work’ between themselves and ‘reckless junkies.’ • Married distances himself from his reckless friend: 'He’s reckless. He do anything to get high. He’s a bona fide junkie. I’m a junkie but I’m not an irresponsible junkie. I’m gonna take care of me. I eat. I sleep. I go to the doctor’s. I take care of myself, you know?...People don’t take baths. People just want to be chasing that.'

10. Importance of stable income strategies • Stable income strategies played a pivotal role in maintaining double-negatives’ lives by allowing them to perform various drug using and non-drug using roles successfully. • It helps them maintain access to drugs, and provides them with a possibility to borrow money based on their ability to return it (e.g. receiving credit from drug dealers if the informant temporarily lacks cash). • It provides money to buy syringes in pharmacies or off the street. • It lets them avoid pooling money with other users.

11. Importance of stable income strategies (cont.) • A stable income strategy thus reduces risky situations such as withdrawal, lack of sterile syringes, and the necessity of injecting with other users. • Having a stable income source also lets drug users perform non-drug-using roles – as a spouse, parent, son or daughter, or friend. It is also crucial in maintaining a proper appearance and avoiding homelessness.

12. Managing loss of control over drug use • However, despite having long periods in which they functioned as “successful drug users,” all of our double-negative informants sometimes went through other periods when they lost control over their drug use. Oftentimes failure to perform non-drug using roles served for them as a signal that something must be done. • When they did lose control over their drug consumption they skillfully resorted to various institutions, such as detoxes and methadone programs, to regain stability and re-build their resource system.

13. Managing loss of control over drug use (cont.) • The case of Barber illustrates this point: 'Yeah, certain things that I would normally pay attention to, I wouldn’t. You know like I would be late with the rent. I would fall off on my responsibilities at home… I broke some of my own rules. I started missing days at work. Then after all that, that's when the methadone program came into play.' • The case of Ugly Ducking (who ‘was getting high and still maintaining’ as we saw above) is even more severe: I’m starting to have like a non-caring attitude about myself. Like I stopped caring about the rest of the world and just concentrated on dope.’ • He goes on: ‘This is the point where my mother doesn’t want anything to do with me. I robbed my mother for $1,000. I stuck up my cousin. I robbed my other cousin’s house. Nobody wants me around. People are looking for me to kill me’(he enrolled in a methadone program after that)

14. Conclusion • Consideration of drug users only in terms of their risk practices is insufficient for understanding how they remained uninfected in the long run. • Successful performance of non-drug using roles stabilizes their lives, strengthens their self-concept, and sometimes directly influences their drug intake and risk behaviors. • Analysis of their biographies as complex life-trajectories involving non-drug using aspects is indispensible for comprehending long-term risk trajectories.